OUR JOURNEYS

Patient story

John Chastain

by Dawn Chastain

Our story is kind of unique. It began in 1994 with my father in-law, Julieus Chastain, being diagnosed with primary pulmonary hypertension. He was in on the trails of Flolan. Unfortunately he passed away from PPH in December of 1999. My father in-law made us promise that we would have my husband checked for PPH and not let this happen to us.

Well, in January, 2008 my husband John had to have an EKG for having a lipoma removed from his back. The EKG came back abnormal with inverted T waves. So before we could have the liploma removed we had to undergo a left heart cath. The Left heart cath was perfectly normal!! So the doctors agreed to perform the surgery. John came through surgery without a hitch.

But in February, John passed out playing basketball with our teenagers. We passed that off as hypertensiondue to a recent change in a blood pressure medication called Diovan. So we just let things rock on a bit.

On March 25, 2008 John was at work and passed out cold. He was unresponsive for over five minutes. He was breathing but non-responsive. A friend of ours called me to come up to his work. I knew something was wrong because she was crying uncontrollably. When I reached Wal-Mart John was as pale as a ghost and very confused. I immediately told them that I was going to take John to the emergency room. With a little bit of argument, Wal-Mart let him leave.

I took John to the ER where I work. Dr. Montgomery was working and she had all the usual cardiac labs drawn and everything but his BNP came back normal. The BNP showed 225, which indicates congestive heart failure. I broke down crying and so did John. We were admitted and had an echo cardiogram. The technician asked if we had any high blood pressure problems going on and I questioned her and found out that my hubby's PA pressure was 88. That is very high. So we were told to follow up with our cardiologist. We had to wait for a week to see her in her office.

Dr. Mehta told us that John did in fact have an increased PA pressure but that she didn't think he had PH. We asked her point blank and were told, "no way does he have PH." She ran a transesophageal echo cardiogram (TEE) to check PA pressures, PFTs to check lung functions, and VQ lung scan to check for blood clots. All but the TEE was normal. And still we were told that John didn't have PH. John was asked to come back to the office in a day or two for a treadmill stress test, which he failed within 3 minutes. He was ready to pass out and got off the treadmill. The doctor told us then that we had a problem and needed to have a right heart cath to find out what was causing this increased pressure in his heart.

We saw Dr. Steve Hutchins on April 23rd. His office is located in Little Rock, which is two hours from our home. Dr. Hutchins was so informative and told us for the first time that we in fact had Primary Pulmonary Hypertension and that it was probably genetically related. Needless to say we were floored. John was scheduled for a right heart cath on April 25th. Both of us cried all the way back home.

On April 25th John had his first right heart cath. His PA pressures were 93. They gave him a nitrous oxide test to check for responsiveness to vasodilators. John's pressures came down slightly with nitrus. So we were referred to Vanderbilt Medical Center to see Dr. Ivan Robbins at the PH clinic which is six and a half hours away from our home.

We saw Dr. Robbin's for the first time on May 12. We had discussed oral Letaris therapy but Dr. Robbins wanted us to schedule an echocardiogram the next day. We agreed and had the echo scheduled. We left the hospital and went back to our hotel. We ate supper and decided we wanted to sit in the hot tub and relax so out to the hot tub we went. We sat in a lukewarm tub for less than five minutes then got out and walked around the pool deck talking about our plans.

John decided to get into the shallow end of pool for a minute. He was getting out and I turned away to go get our clothes when I heard a loud blood curdling thud. John passed out and hit the pool deck dead weight. When I turned around all I could see were his feet and I screamed. I ran over to him and he was having what looked like a seizure. I tried to open his airway and couldn't. All I could do was scream at him to breathe and cry. Someone on the balcony saw the incident and called the hotel desk and 911. The paramedics arrived and by that time John had come to. I was trying to comfort him. He didn't remember anything. John was whisked away from me in the back of an ambulance. I was crying even harder and trying to talk to my mother back in Arkansas on the cell phone.

I followed John's ambulance to the emergency room. Once there it took the staff two hours to let me lay my hands on the love of my life. I have never cried so hard in all my life. Finally, I got to see John and I was still crying when I got to him. John was so mad at himself for upsetting me so bad. All I could do was lay my head over on top of his and tell him that he didn't upset me that his passing out really scared me this time. We stayed in the ER for 48 hours awaiting a room upstairs. Our Dr. Robbins came in the next morning and reassured us that John was going to be ok.

We had the echo done on May 13th and I wasn't allowed to go with John. This upset me so badly because I really wanted to be right by my husband's side. Then Dr. Robbins came in and reassured me that John was OK but that his pressures were a lot higher than in the last echo. So he recommended that we get another right heart cath on May 14th. Dr. Robbins came up to our room and discussed the findings of the right heart cath with us. He told us that with John's pressures as high as they were he needed to be started on Flolan to get more aggressive with the PH. We agreed with tears in our eyes.

On May 15 we had John's hickman placed. He had a horrible night that night. He couldn't get pain control and was miserable. I kept asking for pain meds for him but it was taking hours to get the meds. I was crying and so was John by this time. On Friday, May 16, John had another seizure spell at 6:30 am. I couldn't get any help so I had to leave him seizing in a chair and run to the nurse's station. We got back to the room and John told me that he thought he was going to die. I was totally distraught by this time. They gave John morphine and he was totally sedated for hours. Needless to say, he was started on Flolan on May 16th and I really didn't retain much of that first day of teaching. Dr. Robbin's nurse Kim Farmer, RN was such a wonderful Godsend to me that day. She came to our room and I was in tears just totally destroyed. She hugged me and told me not to worr—it was going to be all right.

We got to come home on May 20th!! We set out on our first trip with the Flolan pump and all our medicines and equipment. That seemed like a forever trip. Once home we collapsed into our own bed. I sat the alarm for six hours and went to sleep. I think I slept maybe two hours before I was up checking on John and his Flolan pump.

It's been one month now since that fateful event that night at Nashville. It seems like an eternity. We can mix Flolan in fifteen minutes or less and be back in service for the next 24 hours. We have gotten used to changing the ice packs every six hours while awake and have found the little blue ice packs for coolers that last eight hours for the night time. We were even able to make the trip to Houston for the 2008 PHA Conference!! Life really does go on and how true the statements Kim made were.

John is now able to walk on the treadmill everyday for about 15-20 minutes without being out of breath. He is able to walk around the house and do small things like fold laundry and wash dishes or even cook on the grill, which is his favorite thing to do. His best friend Nate even takes John fishing once in a while. Nate frets over John more than I do I think. We have taught our friends how to handle any crisis that may arise with John and his pump. We have bought all of them a PHA bracelet to wear and what to tell people when they ask about the purple bracelets we wear. We are getting ready to attempt to start a support group in our area since there is none. We want to help others like we were helped in our time of crisis.

Since our crisis, we have found out that John's paternal grandmother died with a hole in her heart and dropsy (possibly PH). John’s paternal aunt died during child birth with a hole in her heart (possibly PH). His paternal uncle died of heart problems and complications from heart surgery. His cousin’s daughter was 20 years old and she died from her heart beating itself to death (possibly PH). So we have found out that John's family on the paternal side may have a lot of PH. Wish we really knew.... We are still trying to find a cure for PH. John's sisters, nephew and mother all had blood drawn for research on the familial PH genetics link.

We came into contact with the PHA by accident. I found the web site after searching the web for more information on PH. I was really impressed. I joined and so did my husband. This Conference in Houston was our first. We were so very impressed. We are planning on going to the one in 2010 if John is able. It really gave John and I the hope we so much needed. It also gave us a sense of belonging to something so powerful and moving. And the people are just wonderful!!! PHers are truly a special group of people. God has given this task to only those strong enough to carry the load and share our experiences with others so that they may feel comfort in their times of need.

 

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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.