Minnesota PH Support Group Blog
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September 12, 2014 PH meeting
Sunday, September 14, 2014

Dr. Samy El- Halawani from United Lung & PH Clinic in St.Paul, MN was our guest speaker today September 12, his presentation was "Insight on Exercise Testing and Exercise in Pulmonary Arterial Hypertension". He is always so liked by everyone and he is always so patient with the Q&A's. As we all know if you sit, you will rust. Always check with your PH doctor before you start any exercise program. You should be monitored as you start. I has been known that excerise will improve your all over health, which will help your blood flow, blood cells, oxygen and muscle tone, etc. Of course...don't over due or push limits. Start out slow, even walking around your house is better then doing nothing. He also pointed out that we should use caution in lifting our arms above our heads, as that adds stress to our heart. Light weights can be used to build strength in you arms...but NOT above your head!

We had a good turn out, 30 count. Two new PH patients attended for their first time with their families,Plus our other members. And we had a good turn out from the Pharm. Reps...Gilead, Actelion, and Accredo. A big Thank you goes out to them for all the support and help.

Lunch and beverages were provided by Gilead. Food was prepared from Eddington's. They do a great job! Sandwiches, salad, hot soups, bread sticks, desserts and beverages! WOW!

Thank you so very much for sponsoring our Twin Cities PH support group.

Weather was cool 68 degrees, but nice with the sun shining bright!

 

 

 

14th Annual Minnesota Twin Cities PH Picnic
Sunday, August 10, 2014

Great time! Great weather and great company!

Great turn out, great food, great Hot Dog Stand...we went though 70 hot dogs. WOW ! Chicken and lunch was delicious!

Dr. Colvin-Adams was our Guest of Honor from the PH & Heart Clinic at the Univ. Of MN. Also attending was Dr. Michael & Bonnie McGoon from the Mayo Clinic in Rochester, MN.

Thank you to all the volunteers who stepped up to help. It made a big difference! Thank you to all who donated money, gifts and gift cards for prizes

Food was catered by Tinucci's and paid for by the PHA Central Fund.

Thank you so very much!

RSVP are needed this weekend for Picnic!
Thursday, July 31, 2014

RSVP are needed this weekend.

I will be ordering food on Monday morning and need the count, if you are still planning to attend...please contact me before Monday.

This is the last reminder!

Don't miss such a FUN event for the PH patients and their families.

14th Annual Picnic - August 9, 2014

Hope to see you there!

It's coming in a few week's! Be ready for some FUN!
Monday, July 14, 2014

August 9, 2014

14th Annual Twin Cities Pulmonary Hypertension support group PICNIC!

It' FUN, It's FREE and it is your time to celebrate!

All the information is on the web's front page!

DON'T forget ...to RSVP. The sooner the better!

See you then!

July 12, 2014 Meet and Greet Meeting
Monday, July 14, 2014

We had a very good meeting. Just about 30 attended. Finally time to get to know each other a little better. As we went around the room, each person including the caregivers share something about themselves that we didn't know before. We had time to discuss different matters and the long term patients helped a lot with answers to those most of their questions. I know how scarey it is for fairly new patient when they start down this road of living with Pulmonary Hypertension.

I can see hope in their face when they hear the stories from the long term patients and when they hear all the thing we do or try to do. Like traveling, in a canoe, biking with oxygen tank. Life has to go on!        

It is hard to make time to talk when we have many speakers though out the year, so this meeting was a pleasure to get to understand their fear's and needs and I hope we encourage all the patient to live life to it's fullest!

 Thank you to all that brought picnic donations for prizes for our up and

coming picnic.

Get out and enjoy the weather!

Lunch ... Pizza and beverages were provided and sponsored by Accredo Therapeutics.

Thank you so very much!

 

More Sad news.
Tuesday, July 01, 2014

Mary Raschke, one our PH patients from our Twin Cities PH support group passed away on Friday, June 27, 2014 at United Hospital in S. Paul, MN at 3:00am.

Mary and Don were at out last meeting in June, we will miss her so much.

Mary's funeral service will be held on Monday, July 7, 2014 at 11:00 am

Grace Place Church, 1545 N. Dieter St., St. Paul, MN. 651-774-1111

We send our love and Deepest Sympathy to Don and their family from our entire PH support group. We will hold them in our prayers.

Connective Tissue Disease with PH
Sunday, June 15, 2014

June 14, 2014 Twin Cities Support group meeting was the subject title " Insights of Connective Tissue Disease in PAH. Our guest speaker was Robin Hohsfield, RN. She works in the PH clinic in Colorado. She spoke about how the different illnesses that along with PAH are treated with Med's. She was full of knowlegage  and added some things that we never heard before.

like...

PAH patients should not use Advil, or med's in that group, she also said that we should not have a colon test...and if any of us fly in a plane and use oxygen. You need to kick your liters up by 2 liters above what your normally use, as the pressurized cabinet is at 8000 feet. All these little ideas are what we love to hear. It makes living with PAH a little easier.! We also learned that their is a difference between PAH and PH.

We want to Thank Robin for a great presentation and hope she will return some time!

We also want to thank Gilead Sciences for sponsoring this presentation, speaker and the luncheon. We really appreciate the help and support we receive from all the Pharm. Companies. We counted 23 attended.

TRANSPLANT ANNIVERSARY
Friday, June 06, 2014

This is my one month liver transplant anniversary.  Happy to report that still no signs of rejection.

Feel good.

Great to be back home for recuperation.

My thanks to all for their continued support and prayers.

May God continue to spread his blessings on us all.

 

Larry Fox

Anna Lawler Memorial service
Sunday, June 01, 2014

FYI -

Anna Lawler Funeral Memorial service will be held at 11:00 am on June 3, 2014 Tuseday and on June 2 Monday visitation will be from 4:00 to 7:00 pm at Johnson Peterson Funeral Home, 612 S. Smith Ave. St. Paul, MN

www.johnsonpeterson.com

Memorials May be sent to Minnesota Citizens Concerned for Life

 

Anna Lawler passing
Thursday, May 29, 2014

I am so sorry at hearing this.  In the short time that Ann and I knew each other we had become kindred spirits in that we both have or had serious liver problems.  As you know I got a new liver on 5-5 just recently.  One of the first persons I called once I was fairly coherent again was Ann.  Both before and after my transplant Ann was nothing but full of information and suggestions on how to approach this 2nd chance in life that we had both been given.  We have been truly blessed.  My heart goes out to her husband Kevin during this time of need.  And I have also lost a lynchpin in my life to help me get through what is still very early in my journey with my new liver.  Ann you will always be in our memories.  May God truly give you the upper seat with a great view.

Larry Fox

 

Sad news
Thursday, May 29, 2014

Today May 29, 2014, we lost another PH patient.

Anna Lawler passed away this morning at Abbott Northwestern Hospital.

Her husband and caregiver, Kevin called just a little while ago to tell me that she passed this morning. Anne was a very strong lady, she lived with a liver transplant for 21 years and also dealing with PH. She gave hope to so many and we always enjoyed her and Kevin when they attended our PH support group meeting. Anna was always full of knowledge to share with everybody. I loved listening to her stories and we talked many times on the phone. She was a very intelligent woman who love her family so much.

Anna's obituary will be in the St. Paul Pioneer Press on Saturday or Sunday in case you are interested in attending the service.

She will be truly missed.

Our Deepest Sympathy to Kevin, their children and family members

Stephanie

May 10, 2014 PH "Old and new drug treatments"
Monday, May 12, 2014

May 10, 2014, Dr. Samy El-Halawani from United PH and lung clinic in St. Paul was our speaker this month and did a presentation about old and new drug treatments for pulmonary hypertension. Thank you Dr. Samy! Also Dr. Kirana Narayana (PH doctor) from the same clinic attended the meeting. We have had good feed back about his presentation. I wish I could of been there and I was not able to attend, as I have a bad case of the flu, but my husband Tom stepped in and I hear he did do a good job. Thank you Tom!

The count that was given to me, was 31 attending. Good turn out!

Anita Howard had brought a board with all the drugs listed, everyone said she did a great job with that and it must of been a lot of hard work! Thank you Anita for all you do for our support group.

A Greek style Luncheon was provided by United Therapeutics and beverages were provided by Accredo Therapeutics. Thank you both for all your help and support!

As always, thank you to Cherly Sasse and the American Lung Association for her support and use of the building.

Stephanie 

Great news...Larry Fox received a new liver!
Tuesday, May 06, 2014

May 5, 2014, Larry Fox received his new liver in Rochester, Minnesota.

Surgery started at 7:55 pm and was finished at 3:00 am in the morning. He is now in ICU and is doing fine. He received the liver from a living 49 year old man. Both were given a transplant, they called it a piggy back surgery. Both are doing well.

We were all very surprise that he got the call so fast, as he was just put on the active transplant list just a few weeks ago. This is a blessing for both him and Judy. Hopefully he will be back...better then ever!

Please continue to keep him in your prayer!

We send our best wishes to Larry for a speedy recovery!

All our love,

Stephanie & Tom 

and the Minnesota "Twin Cities" PH support group

Updated about Larry Fox
Friday, April 18, 2014

Good news!

Larry and Judy Fox were at the Mayo Clinic in Roctester, MN for three days and the transplant team decided to activated him up on the transplant List. He is thrilled to be move up on the list now. He is now only a phone call away from a liver transplant. Larry now needs to get things in order, before he get that phone call.

Please keep Larry and Judy in your prayers that he will receive a new liver very soon, we are so happy for them. 

We will keep you updated as things progress!

Stephanie

 

April 12, 2014 "Oxygen"
Monday, April 14, 2014

Shelly Klein was our guest speaker today and she is from Handi Medical.

Her presentation was about oxygen and she brought different model of portables and concentrators. We learned a lot about the difference in each model, some deliver only lower liters, where some deliver higher liters. There are different kinds for traveling too. We enjoyed all the information about oxygen, she was very knowledgable and she answered many questions from the patients. We counted 36 attended. Nice size group! Things are always changing with these machines, so we need to be kept updated every year. Thank you Shelly for your time and information.

Lunch was provided by Lung, LLC and beverages from Accredo. Thank both of you so very much.

Thank you to our new group door greeters and kitchen helpers. The help was so needed! We still need help in other areas, so if you are interested in just giving a little bit of your time, please let me know! We have a great group and we want it to continue to grow!

Happy Easter to everyone and Happy Spring!

Stephanie

Dr. Eric Fedstad, Mayo Clinic Rochester, MN
Saturday, March 08, 2014

March 8, 2014 PH support group meeting was full of information on how to be prepared for an emergency. Dr. Eric Fedstad was our speaker and bought handouts for everyone. There are so many thing you should get in line before an emergency arises. Being prepared is the Key. Always have a list of your diseases, med's, medical contact information on hand and extra one's at your home, if you need to go to the hospital you should have these paper with you. If you travel, you need to be prepared in different ways. Extra med's, information, list of nearest PH clinic and there is always oxygen issues. So make sure you contact your oxygen supplier to find out if you can contact one in the city that you will be at. Also make sure you bring a copy of your order for oxygen. That is really important!

We had a wonderful turn out, 40 attended today. No snow...hurrah! 26 above !

Dr. Eric Fedstad, you are always welcome to attend our meeting as a guest or even a visitor anytime. It is so meaningful for the patients to connect with the PH doctors outside of an office visit.

Thank you again for your time and sharing your information!

Thank you Actelion for sponsoring our luncheon, sandwiches, salad and even great hot soup and bread sticks. It was good!

Thank you Traci Wahl, Lung LLC, Paul and Tracey from Gilead for helping us out today, they also bought these plastic folders to put in our emergency information that we can keep on our refrig. And also a big thank you to Cheryl Sasse and the American Lung Association for helping us out and the use of their beautiful building. It has been such a blessing to our group as it continues to grow.

Each month a new PH patient joins our PH family. We are so pleased that they have a place to come to share their stories, learn more about living with Pulmonary Hypertension and be a part of a community that is rare, but special!

More Sad news. Sharon Leibel-Johson passed
Wednesday, March 05, 2014

March 3, 2014 we lost another PH patient, Sharon Leibel-johnson.

Her husband, Roy called me today to tell me that she had a very peaceful passing on Monday, March 3. Sharon was 77 years old and had suffered from Pulmonary Hypertension since 2005 and was treated at the Mayo PH Clinic in Rochester. They made over a 100 trips back and forth for her care. Roy was a wonderful caregiver to Sharon.

Vistation will be on Sunday, March 9, 2014 from 4:00 to 7:00 pm and church service on Monday at 11:00 am.

for more information - www.carlsonlillemoen.com

Please keep her family in your prayers.

Sharon was a lovely and kind lady, she will be missed.

 

PH patient passed Feb. 14, 2014
Tuesday, February 25, 2014

Celeste Berry, age 82 passed away on Febuary 14, 2014.

Celeste was a Pulmonary Hypertension patient and a member of our Twin Cities PH support group here in Minnesota. She had a few heart attacks in November and I am sure that must of weaken her heart a lot more. She always attending our support group meeting with her daughter and loving caregiver, Candy Gagliardi. Celeste always enjoyed to be with the group, she told me many times that she wishes she had heard of the group a long time ago. But we are so glad that she did start to attend and she learn a lot about PH.

Our Sympathy goes out to her family, we will miss seeing her, Celeste was a very lovely lady. She is now free of PH and the oxygen tank.

Rest in peace in God's hands.

Thank you to all that signed up to help with Twin Cities support group meetings!
Saturday, February 22, 2014

BIG thank you to...

Anita Howard, she has taken over the support group news letter and will keep the email and addresses of our group.

Charles Howard, has signed up to be the contact person, by emails or phone to Senators, congress rep. Etc.

Renee Freeman, has signed up to be a co-leader And luncheon organizer.

Irene Ohrbom, has agreed to be our secretary and will be keeping notes of each meeting. Also to help with donation/picnic

Wayne Hansen will help with being a Greeter at the front door.

Kitchen Helpers to set up and clean up, Vickie Hanson, Don & Mary Raschke has signed up for that task.

Clean up meeting room, Jim Sunderman agreed to continue helping with that task.

For the Holiday party and Picnic, there is much needed help.

 

if anyone else would like to help out or even rotate with some of these helpers, it would make our PH support group run much more smoother. These tasks are not carved in stone, and please feel free to change your mind at anytime. We would like some kind of a commitment... And I promise that we will not throw you in prison for turning us down. No one is under any obligation, we want everyone to feel comfortable and want this group to be a fun group!

if you have any new ideas, we would love to hear them!

Because of Larry Fox has to spend more time on his health in wait for his liver transplant...it is time to ask for extra help.  I hate to say it, but I have turned 70 today and old age is starting to set in, plus I am also dealing with Pulmonary Hypertension too...so I will be so grateful for even 10 minutes of extra help on what ever task anyone could do.

 

Again, thank you to the ones that have stepped up for now. We have just the best PH support group!

Stephanie and Tom

 

 

February 8, 2014 Honoring our caregivers!
Sunday, February 09, 2014

Today was a special day to honor our caregivers!     

 I read some articles about how the caregivers need to take time for themselves and how to take care of their health. If they put everything into the patients every need, they can wear them self down and then they will be of no help at all. They need to continue to live a good life and enjoy every moment they can. Sometimes, us PH patients forget that the caregiver is tried and worn out too! They do need a break when ever they get take one. We gave each one a ceriticate, a thank you card and a red heart candle to say thank you for all their love and support.

We also had a breakout session for both the caregivers and patients. That gave them the time to ask questions and if need to vent. In both group there were long term caregivers and patients to tell how they handle things. I don't think they want to stop talking. It did go very well!

We decided it is time to ask the group for some help. There are many jobs involved in running a support group along with a big annual picnic and a yearly holiday party. We did have 8 people sign up and we are hoping for some more. Extra help is always welcome.

Our co- leader Larry Fox has been put on the liver transplant list, so he needs to focus on his health and needs at this time. With all the extra help, he will not need to worry about the meetings until he gets better!

The PH support group presented Larry with a healing Lap Quilt, so he can keep it by his side as he goes through his journey to get a new liver. We will keep him and Judy in our daily prayers until he get well again!

Lunch was great!

Hot Italian beef sandwiches on Italian rolls, veggie tray and dip, salad and dressing, choc. Brownies/ cake, potato chips, beverages. It was yummy! It was catered by Tinucci's and sponsored by Lung, LLC and Traci Wahl.

Thank you so very much for this great lunch to Traci and Lung,LLC.

'Also thank you Cheryl Sasse and American Lung Association for your time and use of your wonderful building!

REMEMBER caregivers, this is your support group too! Please take time for yourself! And thank you again for your love and support each and everyday...year after year! Your the backbone, that keeps us moving Forward!

 

 

Holiday Party, Jan. 11, 2014
Saturday, January 11, 2014

Twin Cities PH Holiday party was a big success!

Weather as good, 31 degrees (heat wave) in Minnesota!

We had a good attendance, around 43 came and joined in the fun. We had a fun gift exchange. Everyone likes when they start stealing from each other. We have two parties a year, the Holiday party and our annual picnic. We believe that we all need to make time for fun and to enjoy each other a few times a year. Who wants to talk about our tough time at every meeting, we have all been fighting pulmonary hypertension, but we can not let it take over our every being! We still have to live and enjoy everything we can.

Being positive is the MOST healing thing we can do for ourselves!

Santa always shows up with a bag full of candy canes, I think he makes a special trip from the North Pole, because we serve such good chicken. He is always so jolly!

Thank you to the PHA Central fund for the grant for the food and thank you to Accredo for supplying the beverages. And thank you to the American Lung Association for sharing their beautiful building with our support group!

 

December 14, 2013 meeting
Saturday, December 14, 2013

We had a good meeting. Pam Sadowski RN from Accredo was our speaker.

Pam did a great job and brought samples of all the pumps and inhalers. She had a presentation about all the drugs and the different classes. We had a lot of questions and discussions. Good turn out, I counted 28. you never know with Minnesota weather. Lunch was provided from Amy at United Therapeutics and beverages from Accredo Therapeutics. The food was excellent! Italian...Wow!

We hope we will have a big turn out for our Holiday party, the gift exchange is so much fun. It is one of those times when we have a ball and celebrate all the good things in our lives. Santa might show up, so be good for goodness sake! Laughter is the BEST Medince! Stay warm!

Merry Christmas and Happy New Year! See you next year!

Stephanie  & Tom

Update - Liz Brigham
Thursday, December 12, 2013

They started to slowly wake up Liz today, she still has a long recovery. All in all things seem to be going good so far. We will continue to send prayers to her and her husband Barry. Before the transplant took place, She did email me and told me she has her healing shawl with her at the hospital on her bed. It is the shawl that our PH Twin Cities support group gave to her. We did had it blessed and I am sure it is a comfort to her! She is a very strong woman just like our Cindy Wangerud. I am so happy for both of them, they are free of PH Now!

Liz Brigham having transplant today
Tuesday, December 10, 2013

Liz Brigham will be receiving a heart and double lungs transplant at St. Mary's hospital in Rochester, MN.

Liz is a PH support group leader and a patient to patient help line in N. Carolina. She has been treated for PH at the Mayo Clinic, she is also a long term PH patient. They were told that she needed the transplant this summer and Liz and her husband Barry rented a house in Rochester.

Please keep Liz and Barry, the doctors and the Donors family in your prayers today!

Rochester "Reach for the Stars" Gala
Monday, November 11, 2013

November 9, 2013, Minnesota's largest Pulmonary Hypertension event.

Wonderful evening in Rochester, Minnesota at the Kahler Hotel.

Thank you to Dr. Michael and Bonnie McGoon and the Gala committee for putting together this outstanding event that draws in so many wonderful people.

Thank you, Rino for coming back to Minnesota! You know how much we love you here!

There were so many great items at the silent auction, thank you to everyone who donated. Dinner was pumpkin soup, chicken over rice with vegetables, desserts. They had the car raffle and NO we didn't win! They had a heads or tails game going on...that was fun!

Steve Lange was the Emcee for the evening and as always does a great job! Mayor Ardell Brede spoke, as did Cindy Wangerud about the Minnesota proclamation for Pulmonary Hypertension awareness signed by Governor Mark Dayton and Cindy told her PH story and about her successful transplant. Cindy presented me with the proclamation and it was very emotional. I was very touched and appreciate the kind words so much. Big thank you!

Juliet Skuldt was the featured speaker and she is the mother of a child PH patient. She told how they were in shock when they got the DX of Pulmonary Hypertension and the journey they have been on ever since. They are finding hope for the future. Their family was there and they daughter is doing well. Best wishes to their whole family.

Davina and the Vagabonds (the band) was amazing! Boy they had the place jumping. We really enjoyed their music! JAZZ!

I am sure the total donations will be at a high number this year! It's all for PH...WOW

Thank you again to Dr. Micheal and the wonderful Bonnie McGoon for all their hard work! Hat's off to you both!

 

November 7, 2013 PH awareness day in Minnesota!
Friday, November 08, 2013

A great day at United Hospital in St. Paul, MN handing out information about Pulmonary Hypertension.

Larry and Judy Fox, Traci Wahl from LungLLC, Pam Sadowaski from Accredo, Amy Schuette from United Therapeutics, Kate Blochinger and myself manned the two tables from 10:00 to 3:00.

We were giving out coffee sleeves to put around their coffee cups. It had the Zebra and all the PH information printed on them. They were sent here from the New Jersey support group leader Bonnie. She had 6000 printed and shared them with so many other support groups. It was though a grant from Tom Lastos fund. Thank you Bonnie for sharing with us. We did send some down to the Rochester group and to Dr. and Bonnie McGoon so they can also use them in November for awareness.

 

 

It was so much fun having people try the straw test. What they would do, is plug their nose and breath though a regular straw for one minute. We timed them, then they would do the same thing using a coffee stirrer. We explained that using the regular straw shows how PH patients breath everyday with no movement. Then when they used the coffee stirrer, it showed them how we breath with walking or any kind of exercise. Everyone was amazed and they never thought it would be that hard to breath. It was a great tool to explain this dieases. We talked about giving this test to all the caregivers... so they would understand what their loved one is going though.

We handed out a lot of Pulmonary Hypertension material and cookies and candy. I believe we really spread the word of PH. We always are in a good location at United Hospital. So much traffic coming by our tables and I think we talked to almost all of them. We got the message across and hopfully these people will continue to share our information.

I hope next year, more patients will step up to the plate and have an awareness table at other hospitals!

Lois and Preston Piper requested a "2013" proclamation from Governor Mark Dayton in memory of their daughter Mallory Hicks. They shared with us and we has it framed and it was at the hospital with us, and we were very proud to display it and show it to everyone that walked by. Thank you Lois and Preston!

Stephanie Layer

 

 

Happy Halloween!
Thursday, October 31, 2013

Happy Halloween to each one of you!

Always keep your pumpkin glowing!

The light is our hope! 

 

October 12, 2013 - Medicare / Insurance
Wednesday, October 16, 2013

Saturdays meeting was full of information about the changes in Insurance plans. We found out that MNsure is only for people who do not have insurance. Many companies are not going to handle retires insurance any more, so then you will have start looking for a new plan.

our speaker, Robert "Bob" Grams from Senior Link, shed light on how to search and what to look for. You prescriptions are most important. It all depends on your premium cost, check to see if there is a donut hole cost. It takes some work, but in the long run, you might even find you could get lower price premiums. Thank you Bob! You did a great job and took your time to answer questions. We hope that we can have Senior Link back. They are full of information for Seniors. Also you can contact them and they will be happy to help you with insurance choices and many other Senior questions.

We had a good turn out and lunch was provided by Kara Gulden from Actelion and beverages from Accredo. We really appreciate all the support and help. Thank you to all and thank you to the American Lung Association for letting us use their wonderful building and last be not least...thank you to Cheryl Sasse for spending one Saturday a month with us. Winter is on it way, please check to see if we have to cancel because of weather...we do not want anyone in harms way.

We are Canceling November 9 meeting, because most of us will be traveling to Rochester got the Reach for the Stars Gala.

this is the BIGGEST fund raiser in Minnesota! Hope you can make it. PH patients can attend for FREE. You can still contact Bonnie McGoon to register!

next meeting will be in December! See you then!

Happy Halloween!

Stephanie

September 14, 2013 meeting about colds and flu med's
Sunday, September 15, 2013

Linda Dugan, Pharmatist from Accredo Therapeutics did a presentation about over the counter med's to help us when the cold and flu season hits. We had qestions and answers. Including if any of these drugs would interfere with our med's that we take to treat Pulmonary Hypertension. It is so important to know what and what not you can do before you do come down with these viruses. We were told to make sure we all get the flu shot. Some people feel that they will get the flu from that vaccine...this s not true. It is a dead virus that is in there. With are weaken condition, it is so important to take as many precautions as possible. Hand sanitizer, vitamins, etc. and stay out of crowds in the winter. Thank you Linda for a very knowledgable presentation. We all have to be reminded each year.

We had a good turn out, 32 attended. The weather was a little cooler, but very pleasant for a change. We had two new patients that attended. Sandwiches and beverages were provided by Accredo Therapeutics and of course our Minnesota pot luck!

I passed out registration forms For the Rochester "Reach for the Stars" Gala. We hope everyone will join us on that fun night!

Thank you to the American Lung Association for the use of your wonderful building!

 

Minnesota "Twin Cities" PH 13th annual picnic
Monday, August 12, 2013

August 10, 2013, WOW what a great day! Minnesota perfect weather. The picnic was held at Battle Creek Park in Maplewood, MN

Dr. Marc Pritzker from the Univ. of MN was our Guest of Honor and also Dr. Thenappan. He just joined the PH team at the Univ. of MN. Also Dr. Micheal and Bonnie McGoon from the Mayo clinic in Rochester, MN along with their two grandsons. The group presented Dr. Pritzker with a Bow tie, bottle of wine and Dr. McGoon was presented a bottle of wine with his and Bonnie's and grandson's picture on the label. We also gave them and the Pharm. Rep's a certificate. Our luncheon was sponsored by PHA Central Fund (chicken, meatballs, rigatoni, salad and dressing, beans, antipasta, assortment of breads and rolls and butter) and United Therapeutic sponsered the park permit. Thank you both so very much! Everyone brought desserts to share. It was a large selection to choose from!

We had around 145 attended. Patients, families and caregivers. Lots of great prizes were given out. Larry Fox and Tom Layer wore chicken hats so they could get some laughs from everyone and why did they wear chicken hats? Because we were serving chicken! I think they could get the laugh anyway! But it was fun!

As always, we are so proud of our PH support group. We always try to give hope to the patients, we have all become a special family. I have always said "the Doctors treat the disease, but the support groups are where you learn to live with it"! And we try to share being postive...no matter what! It is hard to walk this road of Pulmonary Hypertension, but together, we are a strong support system. We believe that is a major part of healing!

Thank you everyone, each one of you made this day special!

Stephanie & Tom Layer

 

Photos from the 2013 Picnic Saturday August 10
Sunday, August 11, 2013

When you arrive late you don't get to take so many pictures.  But I was able to get into the group shot, just barely, and snap a few good photos of the group.  One is on our home page, 2 others are here.  I expect those who took other pictures will send them to Stephanie or me, and they will get resized and added either to the Photos page or here.

Dave Naumann

 

 

 

RSVP's are needed / for PH picnic!
Wednesday, July 31, 2013

I know there a lot of you out there, that just might of forgot or are just waiting until next week.

but we cannot wait until then, as the Restuarant needs to order a week ahead. . So just shoot me a email or give me or Larry a call. We have a lot of prizes for the drawings and a fun time awaiting!

hope to see you there!

Lost another PH patient, Keith Sass
Saturday, July 27, 2013

With a very sadden heart, we have lost Keith Sass on Thursday at the Univ. of Minnesota Medical center. Keith was just the sweetest guy. He loved everyone and loved his computer. He even wrote a book. Our prayers go out to his mother Kim and his sister, Kellie and her husband and baby and all of Keith's family. He will be missed so much.

this has been another hard year, as our group has lost so many PH patients...but it makes us fight even harder for a cure for PH.

Keith's service will be held at, MapleOaks Funeral home. 2585 Stillwater Road, Maplewood, MN 55119 on July 30, 2013 from 3:30 to 8:30 with a prater service at 8:00pm

Stephanie

PH Picnic is all most here! RSVP are NEEDED this coming week!
Friday, July 26, 2013

Please don't put off RSVP, we don't want to be short of food.

There is no charge, but we need to order the food and the last thing...we don't want anyone going home hungery ! So with that said, you can call me or Larry Fox or send us a email, or ride a horse over to my house. We'll take your RSVP any way we can get it!

hope to see you there!

Stephanie

July 13, 2013 DVD presentation by Larry Fox
Saturday, July 13, 2013

Larry Fox showed a DVD presentation that Dr. Micheal McGoon maded from the Mayo PH clinic in Rochester, MN about PH Treatments "Whats new on the horizon".

The presentation was about a hour long and it explain how the different treatments work in different ways and how they are starting to do combination drug treatment from two to three  drugs. They are starting to look to the future and looking for new ways to attack this diease. Charles Howard printed out three sheet for each patient, that helped explain what was on the video.  That was great, then they could take that home to read. Thank you Charlie and Anita for sharing.

We talked about traveling in the summer months and reminding them to take extra water and meds. Planning their trips are very important for all the patients. there is a lot of information about traveling with PH on the PHA web site, click under the patients. We also talked about the importance of contacting your EMT's or your local Fire department with all your information and list of drugs. They welcome that information, as if you would have an emergency...they will know what to do and how to handle the situation. Cheryl Sasse told us something we didn't know, don't leave pressurized oxygen containers in cars in hot weather. They can exploded at certain textures purse (like over 110 degrees) and in a closed up car...it can reach that temp fast on a hot day!

It is a warm summer day, but not too humid. We had another good size group attending. I count 29. Pizza Lunch was provided by the PHA Central Fund and the beverage and ice was provided by Accredo...of course we always have our pot lunch which included hot dogs, chicken, fruit and veggies, salads and sweets. No one ever goes away hungey for sure. It's a Minnesota thing!

Thanks to everyone who attended and sharing good ideas. Some of the patients bought donations for the give away at the picnic...which is coming up soon, August 10. Thank you so much for doing that. it really helps. Hope to see YOU then!

June 8, 2013 general meeting
Tuesday, June 11, 2013

Larry Fox and Irene held the PHMeeting at the American Lung Asscoiation building on June 8. They had a good turn out, as 31 attended. Lunch was from Carbone's and provided by the PHA Central Fund and beverages from Accredo.

they had good questions and answers, it is always great to have a general meeting for every patient has they opportunity to voice their opinions. Our meetings are always casual and we hope everyone feels welcomed and comfortable.

thank you Larry and Irene

May 28, 2013 Kathy Badger passed away
Wednesday, May 29, 2013

I feel so bad that we have lost Kathy Badger last night from cancer, not PH. Kathy has been a member and part of our PH support group for many years. I did get to see her yesterday around noon and had the honor to give her a kiss and say good bye. She opened her eyes and smiled.

Kathy has become a dear friend over the years and lived in our area. So I got to see her often and we had fun going out to lunch. Kathy has battled cancer for the past year on top of having PH, pulmonary fibrosis and scleroderma. I will really miss her and our talks and laughs together

Kathy is the second patient from our group who has passed away from cancer this year. Ray Westphall was the other patient. May they both rest in peace!

Stephanie

May 11, 2013 New oxygen options
Thursday, May 16, 2013

Robert McCoy was our speaker and was informative about the use of oxygen and many different types of delivery systems. He told us that using a oximeter to check our oxygen saturtion is very important, as some of the regulator may not exact...so if it says you are at 3 liters and you check saturation ration. There is a change it might be alittle off and you could be under 90. We had around 24 attending, it was a nice size group and guess what...spring showed up!

thank you to the PH?a Central fund for providing te Subwy sandwiches and Accredo for te ice and beverages!

April 12, 2013 PH emergency prepared
Sunday, April 14, 2013

Great meeting, we had 48 attending. It was a FULL house!

Anastasia Guidry RN from the St. Paul PH and Lung Clinic gave a very interesting presentation on How to be prepared for an emergency. Lots of tips on what to do or have ready when things go wrong or you end up with a trip to a hospital. PH patients can not take the chance with all the med's we take...we always have to be ready and always keep a list of all your med's on you and update them often. Remember we should all be wearing a I.D. Bracelet.

Thank you Anastasia! good job!

Anastasia's parents, brother, sister and sister- in- law also joined our meeting. It was her Fathers birthday. We all join in singing" Happy Birthday" too him. We had a fun time will all of that, she sure has a loving family and they are all so proud of her and rightfully so. She is a good PH nurse. Paul from Gilead sponsored the food from D'amico and sons and Accredo furnished the beverage. Thanks to both companies for helping us out.

we were hoping for sunshine and flowers blooming, but we live in Minnesota and we never know what the weather will be. I hopeful May will bring in the flowers.

Happy Spring!

Stephanie

 

 

NEW ...PH or medical items that you have no use for.
Friday, April 12, 2013

If you have PH related or medical items that you no longer have use for and would like to sell, trade, swap or give away. You can contact either myself or Larry and we will list the item on this blog or you can also annouce your item at any of our support group meetings. We are only trying to have a extra way to help our PH patients in this support group.

We are NOT responsible for items or purchase's. These transactions are between the two parties only. 

 

Ray Westphall passed away on March 16, 2013
Thursday, March 21, 2013

We lost one of our long time PH members, Ray Westphall on March 16, 2013

He will be truly missed by everyone. He was always so brave and never, complained about what he was going though. He battled PH, lung transplant and cancer. Ray was a true "Marine". His visitation will be on Sunday 3 to 5pm at Transfiguration Catholic Church, 6133 15 th St. N, Oakdale and one hour prior to mass of Christan Burial Monday, The 10:00am at church.

 

INR testing - Lincare Health Specialists
Monday, March 11, 2013

March 9, 2013, Lincare Health Specialist's, Brad Ashton Manager, Ruth Burling and Jodi Little did nice presentation about INR testing. So many of the pulmonary hypertension patients are taking blood thinners like warfarin and they go into their doctors office once a month to have their blood tested to see where they are. We have heard of a few PH patients who inbetween time of their testing began to have some bleeding problems. Blood clotting had gotten too thin. We have since found out, that you can get a INR testing kit for home use if your Doctor OK's it. I do have one at home and now I feel more comfortable, knowing we are keeping a closer eye on my INR. If your doctor does say OK for you to use the testing kit at home, then they need to get the insurance to say yes too. Medicare does cover it. This is not for everyone, but now we know we have another choice to use if needed.

Thank you to Brad Ashton, Ruth Burling and Jodi Little for spending the afternoon with our support group. They also spoke about oxygen usage and the different tanks and delivery systems. We had Q&A time that was very helpful. We hope they will come back. If you think you might need the INR testing kit, you can contact Lincare at 651-287-0370 for a form that you will take to your doctor to be filled out. Lincare specialists will be glad to help you with this and answer any more questions you have.

We had another nice luncheon. 33 attended. Subway sandwiches, potato chips and veggy tray were provided by the PHA Central fund and beverages were provided by Accredo. Also great potluck side dishEd that the patients always bring to share with our group. Thank you again to the PHA central fund and Accredo for funding our support group meeting.

PH GALA coming in the fall of 2013
Tuesday, February 12, 2013

November 9, 2013 is the date set for the Rochester PH Gala "Reach for the Stars". It is Minnesota's largest event for Pulmonary Hypertension.

Please add this date to your calendar, we will post more information soon!

Honoring our caregivers
Tuesday, February 12, 2013

Feb. 9, 2013 was our day to honor our PH caregivers. We had a nice turn out. Every caregiver was given a packet filled with information on How to be a good caregiver and how to take care of their own needs. Each caregiver drew a question from a eveople and read the question. It opened up a good discussion and everyone got to join in giving good answers. The patients gave each caregiver a card that had a poem inside...thanking them for their kindness, love and care. They also received a heart shaped pin with a awareness ribbon charm that said hope engraved on it. And to top it off, they also received a certificate.

We held a Minnesota potluck lunch this month, always good, this time we had a lot of sweet...everyone one was thinking about Valentine's day! Accredo provided the ice and beverage. Thank you alway for all your support!

Happy Valentine's Day to everyone!

Stephanie & Tom

2013 PH support group 13th Holiday party
Sunday, January 13, 2013

Big turn out! Jan. 12, 2013 was our 13th holiday party and was held at the American Lung Assocaition building in St. Paul. Weather held out for us, we were all a little worried that we would get some freezing ice but we just had some cold air and even some sun shine broke though. Santa came all the way down from the North Pole just to see us and of course he had a lot of candy canes to share with everyone. Our famous gift exchange was a hit, the best part is when they start to steal from each other. There are always a few favorite gifts that everyone seems to want. The food was outstanding, Minnesota always has been known for their potluck's. We had chicken, cheesy potatoes and rigatoni with sauce catered in from Tinnuci's catering sponsored and provided by the PHA central fund and beverages provided by Accredo. Every patients and families bought salads, hot dishes, desserts...we had full tables and no one went home hungary.

The best part of this party was to see all the PH patients and their families, caregivers, and friends laughing and smiling. I still think laughter is the best medince. The friendships that everyone has made in this group is priceless and that's what make our group so strong. Together we gather strength to fight our daily battles and it seems to work for each one of us!

Thank you to everyone who attended and shared in this fun event!

Thank you to Cheryl Sasse from the American Lung Association for all the help and support and giving of her time each month, so we can have our meetings.

Stephanie

 

 

MERRY CHRISTMAS & Happy "2013" New Year!
Tuesday, December 11, 2012

We want to wish each and everyone of the Minnesota Pulmonary Hypertension patients, their families, caregivers, PH doctors & nurses and all the Pharmaceutical Rep's that helps and supports our Twin Cities PH support group year after year A very Merry Christmas and Happy New year 2013.

And to our wonderful Pulmonary Hypertension Association , Rino, Debbie and the WHOLE staff...thank you for fighting for us day and night, day after day, months and years. Wishing you all, Happy Holiday's 

Happy Holiday and hope you all have a safe and peaceful holiday time!

Stephanie, Tom, Larry, Judy and Irene

Dec. 8, 2012 - Paula Lugar, Health care coach & caregiver
Tuesday, December 11, 2012

Paula LugarVery interesting meeting with Paula Lugar, our speaker giving us information and tips on how to get better medical help. Paula is caregiver to her husband Frank and a health care coach. She told us to always keep a updated med. list along with all your medical information. She had such a great point, if you can not afford some tests or treatments...don't be afraid to ask if there are other choices. Who would think of doing that, but she is right. It is our bodies and we are our keepers, so we do need to know if we can have a choice and maybe a better one all and all. She said we could have her back in the spring for more information. Paula is a wonderful caregiver to her husband, but she just went though a brain anuerizm surgery and is still recovering and still she had time for our group. We send big hugs to her and Frank and a big thank you for sharing your information and thank you for bring printed out hand outs for all to share.

Great pizza that was provided by the PHA Central fund and beverages provided by Accredo.

We had goods attendance, around 32 were at the meeting...even Dr. Jon Stratte from Stillwater came and it was so nice to see him. Weather held out, but that night the snow came in ton's like 12 inches. So glad everyone got home safe and sound! That's Minnesota! At least now, we are now guaranteed a white Christmas!

Thank you all for attending, that's what make our group so special!                                                                                        

Stephanie

 

HAPPY THANKSGIVING!
Tuesday, November 13, 2012

To each and everyone of you...we wish you a very Happy Thanksgiving and wish you peace and happiness though out the holiday season.

Remember to take time to take care of your self first, this time of year can take a toll on our bodies. You can still enjoy family, friends and all the goodies, just let other people do most of the work or at least let them help out.

Happy Holiday's!,

Stephanie & Tom

November 10, 2012 - PH med's, flu and colds / Linda Dungan speaker
Monday, November 12, 2012

November 10, 2012, today's speaker was Linda Dugan, Pharmacist from Accredo Therapeutics, she did a presentation about all the medication for treating Pulmonary Hypertension and went though all the stages of PH. She gave us good advice on How to deal with and treat the flu and cold and try to prevent getting sick. WASH HANDS!

Weather was unbelievable warm for November, high 60's. Great potluck luncheon and 28 attended.

Irene conducted her first meeting as co-leader and did a great job! Thanks Irene for helping out!q

Thank you Linda for a very nice presentation!

November 1, 2012 PH awareness tables
Thursday, November 01, 2012

Today at United Hospital in St.Paul, MN we manned PH awareness tables and we use the Zebra theme.

this means in a herd of horses and each one is a different lung diesase...we are the rare one, we are the different one, we are the ZEBRA. It was fun and we all had different zattire items. Hats, scarfs, booties, socks, shirts, purses etc. We had many people coming up to the tables asking abobrat he zebra stuff and that's when we explained just what PH is and information about being DX and treatments. I think those trays of cookies that Preston Wilson brought in from United Therapuetics also was a big draw, then we also had a door prize drawing for a $20.00 gift card donated from Kate Blochinger. We had two from Accredo to help us two.

We out a lot of PH information, we displayed a copy of the Minnesota proclamation signed by Governor Mark Dayton and a letter sent to Lois Piper from Senator Amy Klobachar. Kim Faber will be manning a table at Abbott Northwestern Hospital next Thursday, November 8. Thank you to everyone who took part in this months PH awareness. Please continue to spread the though about PH all month long.

November 8, 2012. Kim Faber, David Naumann, Preston Wilson, Tracy Wahl, Marilyn Manor, Pam from Accredo Therap. all manned the tables at Abott Northwestern / Heart Hospital in Minneapolis, MN. thet handed out PH information and spread more PH awareness and also handed out those great cookies that Preston Wilson from United Therap. always brings.

thank you everyone that took the time out to help.

Stephanie

WOW....what a great Event "Miles for Mallory" walk was a success and 2012 Minnesota Proclamation.
Sunday, October 21, 2012

October20, 2012 was the 2nd Annual "Miles for Mallory" walk brought in at least 150 people who took part in this fun event. It was held at Lake of the Isles in Minneapolis, Minnesota.

 

 

Dr. Michael McGoon from the Mayo PH clinic in Rochester, MN. was presented the Minnesota 2012 proclamation signed by Governor Mark Dayton making November PH awareness month. And we are always so happy that Bonnie McGoon is there with him.

Senator Amy Klobuchar sent a letter that was read by Larry Fox, co- leader of the PH support group offering her support for pulmonary hypertension. The luncheon was very good, sponsored by United therapuetics and there was a drawing for door prizes, that's always fun. The weather was just perfect for a walk, nice crisp fall air and beautiful fall leaves around the Lake of the Isles.

Thank you to everyone who attended, donated and Thank you to Mallory's family for their commitment to fight against PH.

Stephanie

October 13, 2012 - New approach to treating PH
Monday, October 15, 2012

John Scandurra, DVM, MS, CEO of Aria CV, Inc., Karl Vollmers PhD,VP of R&D, and Dr. Marc Pritzker, cardiologist from the PH clinic at the University of Minnesota were our speakers for this special meeting.

John Scandurra speaks to PAHers

They have designed a device that would be implanted into a PH patient that would enlarge the artery so the blood will flow without so much resistance  using a lead with  some type of a inflatable balloon. They had a very good presentation for understanding this approach to treat pulmonary hypertension. This is a non-pharmacological therapy. It is in the baby stages. It has been tested on animals (cow's) and it works well. The patent is pending at this time and it will need more funding. The human trials will not start for 5 to 10 years, but we are so excited because we know there are people out there trying to help all the PH patients. This is emerging shifts in understanding pulmonary hypertension and the treatments used. Our future is looking BRIGHTER!

Dr. Marc Pritzker, Karl Vollmers, John ScandurraThank you, Dr. Marc Pritzker for getting the ball rolling. You are always a pioneer fighting for all the patients and thank you John and Karl for running with the ball and using your knowledge to create this wonderful invention.  

We had 44 attending our meeting. Thank you to the American Lung Association for the use of their building and thank you to the PHA Central Fund for sponsering the great luncheon and Accredo for providing the beverages and ice.

Thank you to everyone that attended, we learned a lot and we are so grateful and proud that this device is coming out of the great state of Minnesota.

Stephanie Layer

Dr. Samy El-Halawani was our speaker on "Insights on Pulmonary Hypertension"
Sunday, September 09, 2012

September 8, 2012, Dr. El-Halawani gave a great presentation on understanding Pulmonary Hypertension, the insights. We had a good group, 35 attended and they had a lot of questions for the doctor. He is always so sweet and takes the time to listen and answer each and every question. Thank you Dr. Samy! It is always so important to get as much information as we can about PH, not only for some of us long term patients...but for helping the newly diagnosed patients. We are all in this together and the more we learn the better we can be our own advocate when we need to be. Only through educating ourselfs on every corner of this dieases, we will get the best treatment and care. We want to say thank you to Gilead for sponsering and providing a great luncheon from D'Amico & sons and Accredo for providing the beverages.

OCTOBER 20, 2012 / 2nd Annual Miles for Mallory
Thursday, August 23, 2012

The 2nd annual Miles for Mallory walk  and spaghetti luncheon will be on Saturday,October 20, 2012 at the Lake of the Isles Lutheran Church, 2020 W. lake of the Isles Pkwy.  Minneapolis, Minnesota 55405

The event is in the memory of Mallory Hicks, who lost her life to Pulmonary Hypertension at the age of thirty-two

Time will be 10:00 am

You can register at the event or online at -     www.firstgiving.com/phassociation/milesformallory additional registration questions and answers: please contact Preston or Lois Piper 952-881-4469  peacepiper@yahoo.com or Kelley Skumautz 310-871-6934  theskumikians@sbcglobal.net

Event cost -$25.00 (includes t-shirt, meal and two raffle tickets)

                   $20.00 Luncheon only (includes meal and two raffle tickets)

                    Children 12 and under are FREE

Registration                           10:00am

Walk begins                           10:30am

Spaghetti luncheon & raffle   12:00pm

We hope you can join in or please donate to First giving, this is all going to PHA to help other PH patients. Thank you and hope to see you there!

 

MN Twin Cities 12th annual picnic has come and gone!
Monday, August 13, 2012

Yes, the 12th annual picnic has come and gone on August 11, 2012, but with a lot of great memories and pictures and stories to tell.

We were so honored to have Dr. Robert and Janell Frantz, Director of the Mayo PH clinic in Rochester, MN, as our Guests of Honor. Remember when Dr. Frantz climbed that mountain for us and release our purple ribbon on top. How could we every forget the moment in time! We presented him with a certificate and statue for all the steps he climbed for us. Dr. Frantz, thank you again.

We had around 145 attended this year and as always we had great food catered by Tinucci's (chicken, meatballs, rigatoni, baked beans, salad with dressing, Italian bread & butter) plus over 50 desserts brought by the patients and families.

There were tons of gifts for the drawings and as usual Larry Fox and Tom Layer did a great job as MC's of the event. Weather was about 78...PERFECT

David Naumann became our support group photographer (as well as our web master), he took  a lot of special pictures along with Anita Howard for our photo album and face book page. Please check them out.

Pictures can say a thousand words.

We want to thank the PHA Central fund for sponsoring this event along with Accredo and Gilead, Lung RX, United Therapy, Actelion.

There were many local businesses and fellow patients and family members who generously donated gift items and gift cards to be given away to the attending guests.

Thank everyone of you for your kindness and helping us give the PH patients a FUN day!

Just remember...it is the special moments in life that stick in our memory bank!

Stephanie Layer

Insurance expert Phil Touhey speaks to July 14 meeting attendees
Monday, July 16, 2012

Insurance is complicated and always getting more so.  Phil Touhey thinks the Affordable Care Act will make it worse -- and more expensive.  The knowledgeable and loquacious insurance man entertained us with his stories and knowedge.  Mr. Touhey handed out useful sheets describing various health support available from the State: MinnesotaCare and other supplements.  There are many levels of support, generally based on income; many people who qualify don't know anything about it.

Save the DATE's!
Thursday, July 12, 2012

 

 

October 20, 2012 "Walk for Mallory" at Lake of the isles and Spaghetti Dinner

 

More information will be updated soon, please add this event to your calendar!

Thank you,

Stephanie

Rochester PH support group meeting
Thursday, June 28, 2012

Neeta Pai is the leader for the Rochester Minnesota area Pulmonary Hypertenion support group.

The next meeting will be on July 7, 2012 at 1:00 at the Saints on Second, courtyard at the Marriott. 161  13th Ave., Rochester, MN 55902  Tel. 507-536-0040 (across from St. Mary's Hospital) with complimentary parking in the back or on the ramp. Karen Wesley from Actelion will do a small presentation and lunch will be provided.

If you live in the area, or in southern Minnesota or can travel to Rochester...you can join that support group by contacting Neeta, at 507-206-6678 or bhatpai@yahoo.com or just go back to PHA support groups page and look up Rochester's group in Minnesota. Hope you can attend either group or both sometime.

And here is a picture of those who were able to attend the meeting. Karyn Wesley from Actelion was the speaker and her presentation was on dealing with anger when you are DX with a chonic illness like PH also Actelion provided the nice lunch. Thank you Neeta, it was a nice afternoon.

Innovation at the U of M an behalf of PH Patients
Thursday, June 28, 2012

Lois Piper reports that a start-up company hopes to use University of Minnesota technology to create a medical device that will treat the debilitating disease pulmonary hypertension.

"Dr. Pritzker and several others have developed a device that extends life span and quality of life for PH patients.  They have formed a startup company to develop it.  This is such exciting news for PH patients, I think, and I want to share it."

You can find the link on Lois's Facebook page or click  http://www.thelinemedia.com/innovationnews/ariacv06292011.aspx.

Me and Oxygen on my annual bicycle trip
Wednesday, June 20, 2012

I've been doing long bicycle trips with 3 or more friends since the late 1980's, when I quit cigarettes for good.  Some were long, including Seattle to Maine, following Lewis & Clark, and Itasca to the Gulf in Louisiana.  Lately, though, the rides have been getting shorter and closer to home.  For example, last year we rode over 400 miles of bicycle only trails in northern Minnesota.

This year,Loren, Terry and I decided to ride north-south highway 75, which runs from the northwestern corner of the state, south to the southwestern corner, along the Red River until its source near Browns Valley, MN, then nore or less straight south to Iowa. It would take 6 days plus a day to drive to Warroad, where we started.  While the ride total was 450 miles, we each rode less than that.  The three of us took turns driving, so we actually pedaled only 50 miles a day. I always got the first and last shift so that I would have time to refill portable canisters between shifts.  In my condition, 25 miles takes at least 2-1/2 hours, sometimes as much as 4 if there are headwinds.  

Lincare let me use a short, Companion refill Reservoir, along with the big Universal I have at home.  I was able to strap both tanks to the bars in the floor that normally hold seats.  The one remaining problem was that I had to tilt the big tank slightly out the side door in order to refill from it, because of the height of the portable units.  At the last minute, they also delivered a second portable unit, since the Companion portable at 6 liters per minute lasts less than 2 hours at full delivery rate, and usually froze when refilled cold.  As it turns out, this was exactly the right oxygen supply configuration.  I had enough for 4 continuous hours on my bike, the two tanks provided enough for all 6 days of riding, and when one froze up after refill the other worked.

I failed to get pictures on the most photogenic day, day 3 -- maybe my camera didn't want to be out in the rain.  Just as we finished breakfast in Crookston the rain started.  Loren and I went back to the motel and put on our rain gear (Terry refuses to ride in the rain -- smart!)  As for Loren and I, we've ridden half-way across the US in the rain, so we're well equipped.  For me that includes Goretex pants and hooded jacket that goes nicely over my helmet and seals at the wrists, plus neoprene booties over my biking shoes, plus waterproof gloves.  So we rode 25 miles in the rain, and at about 10:30, near the end of my shift, the rain stopped so Terry could ride his 50 miles.

Breathing while exercising is the main issue, of course.  And not coughing.  I wear a heart monitor whenever I bike, and have a bike computer that continuously display heartrate.  I carry a finger oximeter, but it is too difficult to use much while holding on to handlebars. I've learned that if I can keep my heart rate below about 116, I can ride for 5 or 6 hours.  On level ground, that ends up being an average speed of about 9-1/2 or 10 mph.  On the other hand, if I pedal harder I can average 12 mph or so, but have a heart rate of 125 and tire out after 2-3 hours.  As to coughing, well, sometimes water helps, sometimes antihistamines do, and always so far it stops after a while.

It is hard not to think this might have been the last long ride after 25 years.  But hard as it was, by next winter, PF and PH permitting, I know I'll want to put those tight shorts and jersey on again!

by David Naumann

How to handle Anger with a chronic illness.
Sunday, June 10, 2012

June 9, 2012

Karyn Wesley, RN, from Actelion, gave a great presentation about dealing with anger when you have a chronic illness. She explained how to face it and try to take control of your future. If you cannot control the anger, there is professional help available. She told us that our spouses and caregivers also go though a lot of anger, as this disease certainly affects them and their lives. She pointed out that we should try and understand their side too. It does take time to accept a chronic illness as it changes many things for all of us PH patients and the loved ones around us. Life can surely go on and we can live a full life with just a few adjustment.

We had 31 attend and I was so amazed with temp"s in the 90's and road construction everwhere in the Twin Cities that we had such a good turn out. We wish everyone headed to the PHA conference in Florida a safe and fun and educational trip. We are looking forward to hearing all the exciting news from the conference.

Have a wonderful summer and try and "stay cool."

Stephanie

 

8 Causes of cravings and how to overcome them
Monday, May 14, 2012

May 12, 2012

Amber Maeilyn, HC from the University of Minnesota did a presentation on how to control your cravings and use different choices. She brought some very good samples to taste. One was made with squash (in the form of dip) that was very tasty indeed. The patients had a lot of question for Amber and she was very patient with all of us. We thank her so very much for her educational material and slide show.

We had 30 attend and as always a good Potluck luncheon and Subway sandwiches provided by the PHA Central fund and beverages provided by Accredo. It was also a beautiful day here in Minnesota, about 70 degrees. Spring means new life! Thank you to everyone of you that was in attendance. We really enjoy each one of you.

Stephanie

April 14, 2012 General meeting / PHA video presentation
Monday, May 14, 2012

David Naumann shown a PHA video about Pulmonary hypertension, it was a good presentation.

Thank you David for setting it all up for our group.

We also had a general meeting, which is so nice to have. We need time to get to know each other and time for Q & A's. The only way to learn to live with pulmonary hypertension is to talk to other patients. We share tips on how to deal with everyday life and that is something the medical professionals cannot help us with. They treat our diseases and give us educational material about what to expect with treatments, but no one really understands how we really feel and just how out of breath we get just doing simple little tasks everyday, day in and day out. The other patients understand and that is what makes up a support group.

Cindy Wangerud also attended and we were just thrilled to see her and what wonderful glow she has now. She fought a good fight and her strength got her though the heart and double lung transplant. Thank you Cindy for sharing your story with our group and we are still keeping up the prayers for you and we are so happy that you are doing so good!

Stephanie

CINDY , MAXINE & Fancy made it home to MINNESOTA!
Monday, April 02, 2012

March 29, 2012, Cindy , Maxine (her Mother) and Fancy paws made the flight from California back to Minnesota so Cindy can start her new life and is now PH free! We will support and keep up the prayers for her on her new journey. Best Wishes and WELCOME HOME!

Stephanie Layer & Larry Fox and PH Twin Cities Support Group

Cindy is coming home to Minnesota!
Thursday, March 22, 2012

On March 29, 2012, Cindy and her Mother Maxine will be flying home to Minnesota after a 4 months stay in California where she received a new heart and double lung transplant at Stanford Univ. Hospital and after suffering from Pulmonary Hypertension for around 13 years. She is now PH free and doing very well. We have been so excited watching her on this new journey of her new life. She has been so brave and has been such an example to the PH community on how she handled all of this and came through it with flying colors! Her will power to make it, shows us that when we make up our minds to fight...we can move mountains.

She NEVER gave up and pushed ahead! I think she has even amazed her doctors!

We welcome both Cindy and Maxine back home to Minnesota!

Stephanie Layer

Telling the PH Story
Wednesday, March 21, 2012

This evening I was skimming the PHA Newsletter, and clicked on the link tht took me to the new video "Empowered by Hope: Understanding Pulmonary Hypertension".  The video is 22 minutes of reality, very powerful.

As PHA's Online Community Liason Kathryn Frix says in the newsletter: "This week I found the new PHA video: “Empowered by Hope: Understanding Pulmonary Hypertension.” I encourage you to share this with your family and friends and use it to educate reporters, Members of Congress and anyone else you are able to reach out to.

And the best part is, this video is easy to share. You can watch it on our Press page, watch and share it from YouTube, or you can order a free DVD from the PHA Store.

I know that "What is pulmonary hypertension?" may still be the first question newly diagnosed patients and their families ask. This video will help to answer that question."

Please do use these links to share this with e veryone!

 

Dave Naumann

March 10, 2012 - OXYGEN & equipment
Sunday, March 11, 2012

Big turnoutSaturday, March 10, 2012 was a great day. Weather was spring like around 68 degree's and we had a wonderful turn out... 42 was the count of attendence. WOW!

Jamie Zakula from Allina Home & Community Services was our speaker, he bought many different oxygen delivery systems, for home and for traveling. He did an excellent presentation and answered many questions from the group. Most of the PH patients at sometime in their treatment will be using oxygen, so it is so important that we understand how the Jamie Zakula from Allinaequitment works and how oxygen helps our body. Traveling is also a big issue for patients and our oxygen suppliers try to make our traveling a little less stressful. Jamie gave us alot of good tips and information to help us move forward with our treatments. A BIG thank you to him and hope he will return soon. We served pizza that was provided from the PHA central fund, beverages were provided from Accredo and pot luck lunch was provided from the patients and family members and of course Paula Swanson's cookie's. YUM! And as always we would like to THANK the American Lung Association for the use of the beauitful building and to Cheryl Sasse for helping us and giving up a Saturday every month for our PH support group meetings.

Happy St. Pat's Day!

Stephanie Layer

Living with PH
Wednesday, March 07, 2012

Hi, my name is Pam Combs and I have been asked to blog about PH.  I will share my life with PH stories, I hope you will enjoy them. 

I was diagnosed six years ago, just after Valentine's day.  The following year was a year of change for me and my family.  I am fortunate to have a wonderful caregiver in my husband and know my journey with PH would be much harder without him.  Besides finding out about PH that year, I also had a thyroidectomy and radiation therapy to treat thyroid cancer, a psuedo annurysm, two subdural hematomas, and the removal of a insitu malenoma.  It was quite a year but we made it through and were happy when all the medical drama slowed down. 

Pam Combs Kayaking with OxygenI learned during that year, that I was stronger then I ever thought when dealing with life changing events.  Keeping a positive attitude made all the difference.  The internet was, and is, a great source of information.  I found many sites for low-sodium foods, even cheese that tastes good and dill pickles!  I found sites for traveling with oxygen, alternatives to the regular oxygen cannula and other items to make living with PH easier.  The PHA site was also a great source of information.

That's it for today.  Thanks for reading. My future blogs will be about our travels with oxygen, activities I thought I would not be able to do again and now can, and dealing with illness while living with PH.

 

Pam

Minneapolis PH Support group
Sunday, February 26, 2012

We were notified this month that the recently formed Minneapolis PH support group has ceased operation.

We would like to say "Thank you" to  Sean and Barb Warren for starting up the second group and for all their time and effort to find meeting locations, speakers and programs, plus all the other support necessary for a new support group. They have notifed us of their decision to close the group. We want to wish them the very best.

All the PH patients, caregivers, and family members from the Minneapolis group are welcome to attend our support group meeting every second Saturday of the month  from 1:00 to 3:00 pm at the American Lung Association Bldg, 490 Concordia Ave. St. Paul, MN 55103 - it is just a short distance east of Dale St on the south side of the freeway. Our location is just off I-94 and is very easy to reach no matter where you live in the Twin Cities. You can also check out our website including the homepage, photo's and blog at www.PHAssociation.org/MinnesotaGroup

Stephanie Layer

 

Honoring the CAREGIVERS
Monday, February 13, 2012

Feb. 11, 2012, as usual we had a full house. 33 attended our monthly meeting and we honored and gave thanks to them for all their support and kindness they have shown to each one of PH patients. We had caregiver packets filled with information on how they can care for them self's, keep them self's healthy and how to take time just for them. It is so important to maintain a healthy mental and physical situtation for them to be good caregivers.

They were each given a Thank you card, a coffee mug with the picture of our support group and a certificate. We had some great conversations going on, along with a great luncheon provided by the PHA central fund and beverages from Accredo! Thank you PH patients for acknowledging your caregiver for all their love and care they do for us! I feel this is such an important part of our support group, as they truly are sharing this illness with us.

Stephanie

Minnesota PH Proclamation Presented at the Univ. of MN
Saturday, January 28, 2012

On January 27, 2012, Lois & Preston Piper and grandson Brandon Hicks presented the Minnesota Pulmonary Hypertension Proclamation signed by Governor Mark Dayton to Dr. Marc Pritzker and Dr. Monica Colvin-Adams at the University of Minnesota in honor and memory of their daughter and Brandon's mother, Mallory Hicks.

Governor's proclamationIn attendance were the staff from the Pulmonary Hypertension clinic which included along with the physicians, Emily Aviles NP, Cathy O'Brien NP, Amber Kerr, Anna Krogman, Alethea Anderson, Batul Mehdi also Preston Wilson from United Therapeutics and Marilyn Manor and Laura Burns from Accredo Therapeutics and Traci Wahl from LungRX. Paula Swanson, Vonne Jonsson, David Weatherhead and Stephanie Layer, all PH patients and members of the Minnesota "Twin Cities" Pulmonary Hypertension support group also attended. Lois and Preston's presentation was a very touching and meaningful event for their family and for the Pulmonary Hypertension community.

We want thank them so much for their time and effort to obtain this proclamation in honor and memory of their daughter Mallory who pasted away from Pulmonary Hypertension one year ago this month. She will never be forgotten and will be in all of our hearts forever.

This proclamation is a testament that we need to continue the fight against Pulmonary Hypertension and find a cure. 

FACEBOOK - a new adventure
Friday, January 20, 2012

The Minnesota "Twin Cities" PH support Group created their Facebook page today. It is a page where PH patients, caregivers and members of the Twin Cities group and share stories, photo's and information. This is a CLOSED group and ONLY our members can go on to the page. If you would like to join, you need to be registered on facebook... then please contact Stephanie, Larry or Pam.It is a New Year with exciting things coming in the future! Be a part of our group moving forward!

Cindy's update
Wednesday, January 18, 2012

We want to let you know that Cindy Wangerud is steadly improving after she received her new heart and double lung transplant in California. She continues to keep us informed on her caring bridge site, but for all of you that have not read her updates, we want you to know that she is getting stronger everyday with the help and support of her Mother and Father who are with her. She is looking forward to her return to Minnesota to see the rest of her family and friends. It will be a little while yet, as she has to have the OK from Stanford to return...hopefully in a few months. Please keep up the prayers for her and we will update when there is more information to pass along.

Thank you for reading our blogs!

Stephanie

HOLIDAY "2012" PH PARTY
Sunday, January 15, 2012

Holiday Party

Santa

Our Annual Pulmonary Hypertension Support Group Holiday party was held on January 14 at the American Lung Association building in St. Paul, Minnesota. We had a great attendance, 51 patients, families, caregivers and Pharm. Rep's and and about half way though the day SANTA showed up to help with the gift exchange and he handed out candy canes. Chicken and rigatoni was sponsored by the PHA Central Fund and was served along with tons of great Minnesota potluck dishes (this group knows how to cook). Beverage plates, etc was sponsored by Accredo Therapeutics.The group presented Cheryl Sasse, Sr. Manager of the American Lung Association with a few gifts of appreciation to her for her kindness and support of our support group and also she gives up a Saturday once a month so we can hold our meetings at that location. We really want to thank her for all of her help. We had a group picture taken, it's hard to fit them all in...but with Vonne's great camera, she always knows how to work it out. Only twice a year, we take the time to celebrate our live's and how far we have come with our illness. When the PH community joins together, we become so much stronger to fight for our cause. Our holiday party is a time to laugh, hug, and share our stories and our joy! Each year gets better and better!

Photo's...anyone that would like copies of our support group photo's can contact Vonne Jonnsen at - Dwvj20@msn.com or 651-704-9248 She is our group photographer

Stephanie

HAPPY "2012" NEW YEAR!
Sunday, January 01, 2012

The Minnesota Twin Cities Pulmonary Hypertension Support group sends BEST WISHES to all of the PH patients in Minnesota and across the world! Every year there is more progress in treating patients with Pulmonary Hypertension. At the beginning of each new year we want to say THANK YOU to all the Doctors, Nurses, PH Clinic's, Caregivers, Family member's, Pharmaceutical Rep's, Supporters, and most of all the Staff at the Pulmonary Hypertension Association, who has stood by us, supported us and has given us hope to move forward! A NEW YEAR and a NEW BEGINNING!

 

Cindy is released from Stanford Hospital
Tuesday, December 13, 2011

Cindy has undergone her heart & double lung transplant and is progressing very well. Yesterday, December 12 Monday Cindy was released  from Stanford Hospital and she now can return to her apartment in San Jose, California along with her Mother Maxine and her little dog Miss Fancy. She has to remain in California for around 3 month to be continued being monitored and run tests.

She is now on her new road of healing and new life. We all here in Minnesota send her our Best Wishes for a speedy recovery and please continue to keep her in your prayers.

December meeting featured Kathy Petersen, NP
Sunday, December 11, 2011

Kathy Petersen, NPNurse Practitioner Kathy Petersen of the St. Paul Lung Clinic gave a very informative talk about sleep disorders including sleep apnea, its many causes, and many attempts to treat it.  One of the methods she described actually involved repeatedly burning away tissues in the throat!!! It doesn't work, she told us.  What works is proper diagnosis and then usually a properly adjusted and fitted Continuous Positive Airway Pressure - CPAP - machine. She brought along a sample CPAP machine, various face masks, and many other items including a sort of backward bra that keeps people from sleeping on their back.  Use your imagination, it has 3 lobes.  We kept Kathy busy answering lots of questions about breathing issues and sleeping.

Those able to come also enjoyed lots of potluck goodies plus more than enough Jimmy John sandwiches courtesy of the central PHA fund.

Dave Naumann

 

Pictures with captions!
Friday, December 09, 2011

Finally, I have learned how to post pictures with captions on our website.  It has been a struggle, though.  I found that to get them to appear the words had to actually be printed (actually, but electonically) on the photo before they are added to the website.  Quite a number of photographic software packages do allow this, but they can be quite complex to learn, and some are also a bit expensive, so there are only a few available on my computers.

Fortunately, the photo management package I use, Picasa (free from Google), keeps captions that you type in  to each photo, and even tucks them into the insides of each picture file, so captions stay with their photos, and can be retrieved by other software.  But you have to have software that can retrieve and display captions, and our website currently cannot do so.

Finally, through lots of trial and error, I found that I can "paste" my captions onto the face of photos within Picasa, and store the result that way.  I just finished adding photos from the October 14 Gala and from the October 29 Benefit for Cindy Wangerud.  So have a look at the photo page.

Dave Naumann

Merry Christmas & a Very Happy "2012" New Year!
Sunday, December 04, 2011

To each and everyone of you, We wish you a very MERRY CHRISTMAS & HAPPY NEW YEAR!

The the holidays are near and we all have alot to do, but in the hustle and bustle of it all...please take time to enjoy the season and take care of yourself. It always seems like we forget to take sometime to stop and take a deep breath and remember to ask for help if you need it, not everyone can keep up with Santa's pace. Each one of you DX with Pulmonary Hypertenion are special and  you need to look back and be proud of your miles stones that you made this past year. We wish you a wonderful holiday season and a New Year filled with peace and joy!

Tom & Stephanie Layer

TRANSPLANT for CINDY
Wednesday, November 16, 2011

November 16, 2011...Today Cindy Wangerud received her heart and double lung transplant at Stanford Univ. in Califor. She is still sedated, but her team of doctor said the procedure went well and the doctors were very happy. Her Mother Maxine is by her side. Cindy is now FLOLAN FREE. She is also PH FREE. We thank everyone for all the prayers and support for Cindy.

We will keep you updated on her recovery! You can also follow her caring bridge site. CINDY'S PHAITH!

November 12th Support Group meeting - Carla Knippenberg RRT / Speaker
Monday, November 14, 2011

Our November 12, 2011 support group meeting had a great turnout. We had 33 attending to hear Carla Knippenberg RRT speak about pulmonary rehab and exercise. She is the Pulmonary Rehab Program Director and is a respiratory therapist from Lakeview Hospital in Stillwater, MN. She had a great slide show presentation and brought a lot of handouts for the patients. Lunch was provided by the PHA Central Fund and beverages from Accredo. We are so lucky that the weather is still Fall-like, but winter is at our door step and hopefully we will have a light snow covering this year, but we know better...wishful thinking.

Stephanie

Two Updates....Rochester Gala......Cindy Wangerud
Saturday, November 05, 2011

The Rochester Gala was held on October 14, 2011 at the Double Tree Hotel.

It was a total success! There were so many special people that attended. It was an evening filled with love, happiness and HOPE for a cure for PH. The silent auction was a flurry of activity, everyone was trying to out bid the one before, they had wonderful donations. I think the real fun was the truffles being sold. They had 400 truffles and in side only one there was a note telling you that you WON. Then you got to pick out a piece of fine jewelry that was donated from a local jeweler in Rochester. You will never guess who won it....Louise Durst RN ( Dr. McGoon's nurse). She really deserved it as she worked so hard on this event. Congratulations! The dinner was steak & stuff chicken breast, very good choice for this special event. The Band was really GREAT, the best I have heard in a long time and the entertainment was very entertaining as well and I mean Dr. Frantz was a hit singing his favorite Bob Dylan song. This event could never come together like it did with out Bonnie McGoon, She doesn't like to take credit for it...but she is a whirlwind! And we are all so thankful for her. We truly enjoyed the evening and I am sure it raised a lot for PH. Thank you to everyone who attended or donated or worked on the committee or gave support. Every other year it just keeps getting bigger and better!Hope to see you in 2013!

Cindy made it to Califorina on Monday/Halloween

Cindy arrived in Califorina on Monday evening with fancy (her dog) and her Mother & Lois. Sounds like they found a very nice two bedroom apartment. They are fairly close to Stanford hospital. She met with a PH doctor who will manage her PH until she receives a transplant. Please keep up sending the prayers to her, she still has a long road to go and she needs all the support we can give her from our PH community.

Cindy's Benefit was held at the American legion in North St. Paul, MN on October 29, 2011.

WOW, they has a ton of silent auction items and a bake sell alone took in $1.000.00. It was a fun event and so many people came out to support her, even her Minister said some prayers and gave Cindy Blessings. That was a very special moment, I think we all had a tear in our eye. Our PH "Twin Cities Support group had a table filled with PH information for everyone at Cindy's request. We had fun and we had PH patients manning the table. Cindy's cookbook can be ordered and the information is on her caring bridge site.

If anyone would like to send a card or note to her, you can contact me for her address. She will be keeping up her journal on her caring bridge site if you would like to follow her updates Thank you to everyone who send prayers, love and support for Cindy.

Nicollet Island Inn dinner & panel a success October 27
Saturday, November 05, 2011

This dinner and presentation, for PAH patients and caregivers, was held Thursday, October 27, 2011, at the Nicollet Island Inn's St. Anthony Room, Minneapolis 55401. More than 40 patients, caregivers, and providers attended, and enjoyed a very good chicken or salmon dinner.  Panelists were Emily Aviles, MS, ACNP, Cardiology and Pulmonary Nurse Practitioner, University of Minnesota Medical Center, and Anastasia Guidry, RN, Clinical Coordinator, St. Paul Pulmonary Hypertension Clinic, St. Paul Lung Clinic. Each gave spirited, informative, and entertaining talks about PH, diagnosis, treatment, patients, and caregivers. The featured speaker was PAH patient, Kelly Tasto, who told of her many challenges with PH and the various ineffective and eventually effective treatments, and of learning that her mother also has PH and her PH journey.   The event was sponsored by United Therapeutics Corporation through Nathanson Partners.

by Dave Naumann

Cindy Wangerud Benefit October 29, 4:30-8:30 at the North St. Paul American Legion
Tuesday, October 25, 2011

         Cindy  Wangerud was diagnosed with Pulmonary Hypertension (PH) in 1999 at the age of  28.  Her PH  has taken it’s toll over the last 12 years, now Cindy has been informed by her physicians  that she needs a double lung and heart transplant.  While this is news no one wants to hear, it also  necessitates a move to California to await organs and for her post-transplant care.  Cindy will need  help with these expenses that may include, but are not limited to, the cost of moving to California, insurance costs, medical bills, housing, transportation to and from California as well as day-to-day living and other expenses. 

        PH is a lung disorder in which the blood pressure in the pulmonary artery rises far above normal levels. The small arteries of the lungs narrow throughout the lungs. PH is the result of greater resistance to blood flow. As a result of the increased workload caused by this resistance, the right side of the heart becomes enlarged. Eventually, progressive right heart failure may develop.

        Cindy has been an advocate for the Pulmonary Hypertension Association (PHA) by being a co-chair for the first ever Walk-A-Thon for PHA and she continued in that role for second year.  In that time she helped to raise $47,000 to help find a cure for the disease. 

        Cindy grew up in Baudette, Minnesota, God’s country.  There she worked at Wigmam and River Bend resorts.  She also worked at the Lake of the Woods Foods.  She now lives in the Twin Cities and works at the Attorney General’s Office as a Coordinator of Section Services.  Living in the Twin Cities  keeps her close to the doctors that care for her so well. 

        Cindy is fighting a good fight.  We want to help her continue on with her journey and help give her the opportunity for a healthy life.  Please join us to celebrate Cindy’s life, continued strength and a long future.  Help give a life it’s full due.

       In addition to all the fun Halloween fun and food, we will be having a silent auction!   Look for the Cindy Wangerud Benefit Facebook page to get previews of some of the items that we will auctioning.  There will also be a number of “Buy Now” items for those of us who don’t like to wait!  Cash, check and credit cards accepted!

If you are unable to attend, donations are graciously being accepted at:

Cindy Wangerud Benefit
c/o Netrix IT
1285 Corporate Center Drive, Suite 190
Eagan, MN 55121

Checks can be made out to "Cindy Wangerud"  (This is a non-tax deductible contribution)

To help you keep up with Cindy's Journey toward health here is the link to her Caringbridge site:
http://www.caringbridge.org/visit/CWangerud

Benefit Location

American Legion Post 39
2678 East 7th Avenue
North St. Paul, MN

PH PATIENT'S, Caregiver's, family member's... PH Stories
Monday, October 24, 2011

WANTED... Your PH Stories.

This Blog is for you! It is so easy to tell your story and it will help other PH patients. Just click on... post a new story and fill it in and then click post story. This is a way to help patients that look on our web site for information. You all know how scarey it is when you are newly DX. Please reach out and tell how you handle this illness and moved on with your life! We Thank you so much for your help! This just might save someone and help move them forward. We are a PH community of Hope, together we will beat this! 

A Visit to Senator Amy Klobuchar's Office
Monday, October 24, 2011

October 24, 2011 - Charles & Anita Howard set up an appointment with Senator Amy Klobuchar's Senior Advisor, Erika Nelson at her Minneapolis office. Charles & Anita Howard, Kathy Badger and Stephanie Layer attended the meeting. Erika gave us a lot of time to tell our stories about Pulmonary hypertension. We showed her pictures of some of the PH patients in our support group and it really painted a picture of our cause. She was very patient and asked us a lot of question about this illness and we shared a lot of information, folders, DVD and a poster of PH.

We hope Senator Klobuchar and her staff will support the PH patients and co-sponsor the Tom Lantos Education and Research Act. Erika was very kind and understanding and we appreciate her time. The more PH awareness we can get out in the state of Minnesota, hopefully more patients will get early DX and treatment!

November is PH AWARENESS MONTH!
Wednesday, October 12, 2011

Please share a story or tell someone about Pulmonary Hypertension.

The month of November is the time of the year when every PH support group trys to go out into the community and educate everyone they can about this diease, we try to encourage everyone to pass the information on to their families, their clinics and just the general population. If we can help just one patient to get early DX, that patient has a better chance because that person will start treatment right away. We don't expect you to go out and stand on a street corner yelling (Allthough that would get attention) just tell someone your story and ask them to pass your story on.

It can be like a chain letter that never stops or evern just tell one person.

Hope you have a great November and try to wear something purple!

October 8, 2011 Cathy O'Brien NP, Univ. of MN - speaker
Wednesday, October 12, 2011

Cathy O'Brien was the speaker for our support group meeting.

She talked about the PH lab test and results and what they mean and why they do them. She also talked about how they classify Pulmonary Hypertension patients. Many patients have secondary diseases and that puts them in a different class. That was very interesting, and that is how they determine how to treat your PH. It is a long process of tests to be DX for PH and then they have to look at everything before deciding on which treatment is best for you. I think we learned alot from her.

 

We has about 25 attend this meeting and the weather was great 78 degree in the month of October WOW. As always we had a nice potluck lunch and Milo & Joyce Berg supplied the Subways sandwiches...THANK YOU so very much! We want to Thank Cathy for sharing her time with our group and hope she will come back soon!

Caring Voice Speakers at our monthly meeting September 10
Monday, September 19, 2011

More than 35 persons attended the meeting at the American Lung Assn building on Saturday between 1:00 and 3:00.  As usual, enough good food was shared for all. 

We were introduced to Caring Voice by two members of their team: Bonnie Rigsby and Jean Lua (pictured).  Their presentation described the organization they represent, Caring Voice Coalition, Inc.  Caring Voice is a charitable organizations that helps individuals with specific chronic diseases.  They can help patients maximize their insurance coverage, connect to other support resources, and provide direct financial support when other sources are insufficient.  PH is one of the chronic diseases covered, with others listed on their website, www.caringvoice.org.

In the discussion following their presentation, Jean and Bonnie made it clear that their mission is to help, their services are always free, and their staff are quite knowledgeable about the diseases and treatments, insurance, and financial complications, and are always willing to answer questions.  Their toll-free number is 888-267-1440.

OUR OWN SPECIAL "WEB MASTER" !
Sunday, September 11, 2011

Our Minnesota "Twin Ciities" Pulmonary Hypertension Support group is so fortunate to have David Naumann as one of our own. He is a professional in every sense of the word. He has created our special PHA Support group web page and he has worked very hard to make it be very accessible for all the patients and caregivers.

The importance of having a web page is to keep open the line of communication for everyone. We have PH patients that can not travel even outside of their own home. They now can come to the site and receive the information that they are looking for. David has opened the door for so many. David himself is a PH patient and a retired professor from the Carlson School at the University of Minnesota. We have so many talented people in our group, they come from every walk of life. It just goes to show that Pulmonary hypertension can effect anyone and that is why we as a group is fighting so hard to move forward and pray someday for a cure!

BIG THANK YOU TO DAVID NAUMANN, OUR WEB MASTER!!!

Stephanie Layer, and Larry and Judy Fox meet with Senator Franken's office
Saturday, September 10, 2011

We, Larry and Judy Fox and myself had an appointment today September 8 at 1:00 with the Health/Field Representative Bethany Snyder from Senator Al Frankens office here in St. Paul, Minnesota.

We told her all about the Tom Lantos Act and gave her a lot of information on pulmonary hypertension and asked her to please give this information to the senator and hopefully he will support and co-sponser the bill.

We had a very nice visit with her, she gave us a lot of time to explain the disease and Judy Fox brought her extra pump, meds, tubing and showed her how it works.

 

 

 

 

We have added the pictures taked at the office.

We are also sending him an invite to the Rochester Gala on Oct 14.

Thank you,

Stephanie Layer

Minnesota "Twin Cities" PH Support Group

 

Charles Howard: As Easy as 1-2-3
Friday, September 09, 2011

On a Wednesday in August, Charles Howard called PHA to order briefing books. He wanted to begin scheduling meetings with his senators and representative to request their co-sponsorship of the Tom Lantos PH Research and Education Act.

A few hours later, Charles called back. Could we put a rush on those briefing books? He’d already scheduled a Monday meeting with Congressman Erik Paulsen’s (R-MN) Health Legislative Assistant.

On Friday, Charles called again. He’d scheduled a second meeting, this one with Congressman Keith Ellison (DFL-MN) and staffer Mike Siebenaler. During the meeting, Rep. Ellison agreed to co-sponsor the PH Research and Education Act of 2011. In his thank you letter, Charles writes:

 “This is why the Tom Lantos Pulmonary Hypertension Research and Education Act is so important. It provides for collaborative action to increase public awareness and research about pulmonary hypertension. The earlier diagnosis and new treatments that result will save lives. Needless to say, we are most grateful for your willingness to be a co-sponsor of H.R.1810. … We have an active and interesting PHA local support group. We invite you, should you have the time, or a member of your staff to attend one of our monthly meetings.”

Our Minnesota PH Support Group 11th Annual Picnic-August 13, 2011
Saturday, August 13, 2011

The picnic was well attended by patients, caregivers, friends and family, plus medical professionals, and the sun came out on what had been a rainy day. We had 150 attend this year, it was our largest attended picnic. Dr. Michael & Bonnie McGoon with Dr. Robert & Janell Frantz from the Mayo PH clinic in Rochester were our guests of Honor. We were also so proud that three families that had lost their loved one to PH attended, our support group is always here for continued support for them, caregivers, families and loved ones. We will always have a bond together. This is a time to celebrate our milestones  A great time was had by all. We always want to Thank all of the donations that were given, so we could have a successful day, There are so many wonderful people out there that really do care. THANK YOU, THANK YOU! Many thanks to Larry and Tom, our co-MCs, and to the picnic committee.

Our own Stephanie Layer contributes conference theme!
Monday, August 08, 2011

PHA is heading back to its roots with the 10th International Pulmonary Hypertension Conference and Scientific Sessions, June 22-24, 2012, in Orlando, Fla. Earlier this summer, PHA invited members of the PH community to submit ideas for a theme to mark this special anniversary Conference. With many entries to choose from, we couldn’t pick just one – so we picked two! PHA used the ideas of both Stephanie Layer (Maplewood, Minn.) and Marilyn Mears (Canton, N.C.) to create our powerful 2012 theme:

The Power of One: From a Kitchen Table to Around the World

 We congratulate both women and look forward to seeing them, as well as the theme, at the 10th International PH Conference.

 As the 10th International Conference approaches, visit the Conference section of PHA's website for all the latest news.

First meeting at the American Lung Association Building, our new regular meeting location
Saturday, July 09, 2011

NEW PERMANENT LOCATION for PH meetings: American Lung Association, 490 Concordia Ave, St. Paul 55103

30 patients and family members attended and everyone loved the building and had a Great time!

PH Patient Milestones: "Moving Forward With PH"
Wednesday, June 29, 2011

John Whitman is a Pulmonary Hypertension patient, a member of the Minnesota “Twin Cities” PH Support Group and co-author and photographer of the new book published here in Minnesota called “Growing Perennials in Cold Climates”.

 

John said he co-wrote this book after he was diagnosed with Pulmonary Hypertension. He didn’t know if he would be able to take on this big project. As we all know with PH, it is very draining and it does knock the wind out of our sails. But with determination, he decided he would move forward and he did it one word at a time and he is still moving. It is another lesson in life for all of us, even when we get hit with something hard, we can pick up our self and still do what we love to do. He is a wonderful example for the PH community and we are so proud of his accomplishment!

PHA on the Road was held at the Minneapolis Marriott Southwest
Wednesday, June 22, 2011

There was a great turnout for this forum, on a rainy saturday in road construction season.  Drs. Monica Colville-Adams, Michael McGoon, and Robert Franz, plus many other medical professionals organized and presented valuable sessions during the forum.  The forum was sponsored by Actelion Pharmaceuticals US, Inc, Gilead Sciences, Inc, and United Therapeutics Corporation. The setting, service, and food at the Marriott was superb.  One of the questions on the forum evaluation sheet were: "Which was the worst session/speaker?"  This writer had to leave that question blank, there were no bad sessions and no bad speakers.  If you missed this year, come the next time.

Allina Hospitals and Clinics add Advanced Care Planning services
Wednesday, June 08, 2011

Making your health care wishes known is important for each of us. Allina Hospitals and Clinics have added Advance Care Planning to their Home and Community Services. From one of their brochures, Advance care planning helps you and your loved ones gain a better sense of your values, preferences and wishes related to health care. It provides guidance and direction to others about your health care wishes in case illness or injury prevents you from telling them yourself. Advance care planning is a process of:

  • Understanding your health care treatment options
  • Clarifying your health care goals
  • Weighing your options about what kind of care you would want or not want
  • Making decisions whether you want to appoint a health care agent or complete a health care directive
  • Communicating your wishes and any documents with your family, friends, and health care provider

Allina has trained facilitators available through their Care Navigation Help Desk at 651-635-9173 or 1-800-261-0879.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.