When I first got sick in September of 2000, I was working at a local insurance company with my husband. We were both underwriters in different departments and I loved my job dearly. I had just briskly stepped up three flights to my desk after a meeting on the first floor of the building. I sat down and felt very strange. I really thought I was having a heart attack, but 39 year old females don't have heart attacks, at least not back then. My attacks feel as though someone has reached into the center of my back and squeezes the heck out of my heart and lungs and then lets go and repeats squeeze, let go, squeeze, let go. Well, after about 5 of these and my co-workers noticing my face turning from beet red to white and then an ashy white with blue lips, they summoned my husband for a trip to the ER.
The pulmonary doc thought I had a pulmonary embolism, nothing showed up on the scans. Nothing showed up anywhere except when they did the deep vein blood draws. That was the start of something, it’s what I call "Life's little curve ball." The summer and fall are the worst for me, it is hard to breathe and hard to function in the dense IL heat with high humidity. Any humidity and I'm done in for. By April of 2001 I was at another hospital, UW/Madison, WI having an open lung biopsy. This revealed bronchiolitis and pulmonary hypertension. They sent the samples everywhere to confirm. They didn't know why though, why would I get this? I never smoked, worked in asbestos, or in coal mines or tobacco fields. This disease made and still makes no sense other than maybe I was strong enough to handle its ups and downs better than the next guy.
I had the chief of pulmonary medicine, Dr. Jeffrey Glassroth at UW/Madison and he was stumped. If I could stump him, then I would be in for a long haul on this disease. Dr. Glassroth and other doctors came up with a cocktail of medicines that would help through my days, hopefully keeping me out of the hospital.
This cocktail worked about two years and we switched insurance companies, which also meant we switched doctors. I was then seen by Dr. Parthasarathy at Loyola and he quickly turned me over to Dr. Bhorade his chief of pulmonary medicine and transplant coordinator. “She takes care of the weird stuff,” he told us. That was reassuring, that my lung disorder was weird. Loyola saved my life by putting me on oxygen for the first time. They told me that when I stand up, my pulse oxygen level drops to low 80's and my heart just races. They then thought it was a heart thing.
I was seen by so many heart specialists, only to find out this is a lung thing causing my heart to spasm. My heart is fine, but the strain the lungs are putting on the heart is becoming a new problem. I have been to Rush, that was disappointing. They told me I didn't have anything wrong and sent me home with instructions on gastric bypass surgery. I was then seen by mayo Clinic in MN. I don't recall the doctor up there, only hearing once again there was nothing wrong. When I was on 40mgs prednisone, there appeared to be nothing wrong. However, each time they attempt to reduce the prednisone below 5mgs, I once again turn blue, spasms begin in my chest and my family is once again in turmoil as I am rushed to the ER.
Mayo sent me home off the oxygen but I then spiraled down and had to be put back on the oxygen to sustain walking capabilities. I am on 4 liters to this day and thank God for Dr. Bhorade, Dr. Dilling and their staff at Loyola in Maywood, IL. I also wouldn't have made it this far without the support of my local doctor, Dr. Terry Miller here in IL. Dr. Miller knows my case better than most and can explain and has to explain it each time I'm transferred to another hospital for pulmonary treatment, since nobody here will take my case. It's too weird and too complicated.
I now have pulmonary hyptertension, clotting disorder, cardiomyopathy and anemia. I have had two dvt's in both legs and two pulmonary embolisms. I have a Greenfield Filter transplanted to prevent traveling of clots from legs to brain/heart. This was transplanted New years Day, 2001 by Dr. Mc Glone in IL where I reside today.
This disease forced my family, my husband Mark, and my 9 year old daughter Liz to go through a lot. It takes the life out of them. They worry that I'm not going to make it through each crisis as it comes up, but I'm not a quitter. I have plans to see my daughter grow up and become something, anything, just as long as she is happy. I have a loving and supportive husband that never complains for doing all the cooking and cleaning and helping with the household chores. We have a 3 year old Australian Shepherd, lab mix named Matilda. Matilda has been trained by us to pick up the paper, my meds, anything that I cannot bend down and get without fainting. She is my soul mate and keeps the squirrels and birds out of the yard daily.
My mother-in-law helps us tremendously especially on the days when I have to make an emergency trip to the ER at 3 a.m. She will come over and take care of my child just with one phone call and not complain about doing it. She's been doing it for five years now and I worry that I'm going to break her. She should be enjoying her retirement years, not taking care of me and my family. My mom helps out with car rides to and from the doctor for me when my husband is unavailable. She also will help out with my daughter if needed.
I have three live siblings: two brothers and one sister all of whom are well. They have no lung disease or heart issues to speak of. I lost one sibling when she was five due to a car accident. Both of my brothers live out of state and my sister resides here in IL with her children.
My meds today consist of; Lasix 80mgs twice a day for pulmonary edema in legs, coumadin 2.5 alternating with 5mgs every other day for clots. Prednisone 10mgs for breathing support. Rapamune 2mgs (repairs lung tissue)this will replace the prednisone. Potassium supplements twice a day because the lasix drains the potassium out of my system. Metropolol 50mgs twice a day the new beta blocker to replace the old isosorbide for angina. Protonix 40mgs twice a day to help my stomach absorb the meds. Vicodin ES 750mg as needed for pain. Flexeril-muscle relaxer for the chest spasms or leg cramps when the potassium levels are low. Cardizem 32mgs Calcium Channel Blocker to keep the clots from forming in my lungs and elsewhere. Xanax .25mgs for anxiety from all of the issues three times a day. The cardizem is taken three times a day as well. Lomotil ( anti-diarrhea) taken when needed since I had lost my gallbladder in '98, cannot digest my food. Provera 10mgs taken the first ten days of every month for hormone replacement. I was passing clots and the first anemia hit, I had to have an emergency endometrial ablation in April of this year at Loyola. Oxygen 4 liters 24/7 tanks to go and concentrator w/100' tubing for the home. iron tablets to rid the anemia. Restoril 30mgs sleeping aid (rapamune's side affects is insomnia).Naprosyn 500mgs twice a day for my osteo/rheumatoid arthritis. I had a back fusion in 1999 and 6 arthroscopic knee surgeries from playing tennis in the late 80's. I think that about does it for the meds other than an anti-biotic now and again since the rapamune lowers my immune system and I can catch anything and it turns ugly.
Since I've been disabled since 2000, I crochet afghans and donate them to charities in my community; Breast Cancer and Families in Crisis at Christmas time. The company will order a blanket, I crochet it, they auction it off. The money goes to the charity and someone gets a beautiful afghan. I donate them and do not get paid. I write poetry and bedtime stories for my daughter. We hope to publish them someday to help others realize that we all feel the same way now and again. I'm here to teach something to someone, that's what I have to believe. Otherwise, why would God allow my family to suffer so much worrying about me and put me through all these tests unless it was to help the next gal out. If they can learn from case to think outside of the box, they may just solve the riddle and get me a cure or the chance to be put on the transplant list.
My daughter worries each day that today is the day that something will happen to her momma while she is at school. This is something I wish my family never had to go through. I would love to wake up tomorrow without the oxygen and just go for a walk. I know though, that its impossible, so for now, I'll keep writing my poems, crocheting my blankets and keeping my positive thoughts. I do see a therapist, social worker to deal with the stress. I would much rather vent to a stranger than vent to my husband. We all agree, it's working out good this way.
I have yet to be at a pulmonary hypertension conference, I am to sick to travel now, dealing with more hemoglobin issues. I look forward to being in a room with people that have the same or close to the same illness. I heard about this website from doctors at all the hospitals I was a patient at from 2000- current. This has been referred out by myself to others that I meet that tell me they have pulmonary hypertension. I ask if they have seen the webpage, if not, I give it to them and tell them it's the best one I've found thus far.
I recently was released from the hospital once again just four weeks ago. I was given permission to go to a concert and broke my arm not paying attention to steps and my oxygen tank. I now do things with one arm in a sling for the next 4 weeks, but with the help of everyone around me and good friends to help me laugh off the serious stuff I think it will be ok. I am hoping to live a long time. I proved I could lose 36 lbs on prednisone with the right will power. I have had the near death dreams, twice now and do believe in a higher power. We are all here for a reason, mine must have been to stump these doctors and create new challenges for the new docs coming on board. Thank you so much for this website and the opportunity to share my feelings tonight.