Health Update, and Future

"Difficult roads often lead us to beautiful destinations."

It has been a rollercoaster of a year. At this time last year I had a slight change in how I was feeling. To me I didn’t think much of it; I figured it had been the hot dry summer air that was affecting my breathing. Three weeks later I had a routine doctor appointment in September 2015. At that time I was seeing him every six months because I was doing so well. My echocardiogram showed my pulmonary pressures were a little elevated. In trusting my doctor because I valued his opinions, Pulmonary Hypertension is what he studied while at the University of Washington he thought of trying another medication. The medication Tyvaso was an inhaled medication kind of like a nebulizer, after going through insurance approval, receiving the machine, medicine and what not. I started it the end of October and came off of it by December 1st. Let’s just say it was a month of hell, from the strong side of effects, loss of appetite, and no energy. Instead of having a positive effect the medicine had the opposite effect. I had gone into a downward spiral with my health.

As of the New Year it has been a constant limbo. I was starting to feel better, although my oxygen was still at 6 liters of oxygen instead of 2 liters like I had been before. I started Pulmonary Rehab in March in the hopes of getting stronger and gaining weight and hopefully I would be able to come down in the amount of oxygen I had been using. I had my appointment with my doctor not long after I had started the program. I was able to do a 6 minute walk for the first time since everything had taken place, and they tested my BNP (Brain Natriuretic Peptide) that test shows the excess fluid that can be built up around the heart and can indicate heart failure. At that time my numbers were close to normal. Even after hitting a good point my doctor still believed whatever was driving going on is my damaged lungs due to being a preemie and not the Pulmonary Hypertension. In June I was having a difficult time getting through a workout at rehab, I felt like my heart was going to explode out of my chest. I had a check up appointment the end of June with my doctor; I couldn’t walk without being tired. Just from getting up from the wheelchair to check my weight and walk into the room my SAT’s were very low, I tried to do a 6 minute walk but barely got a couple minutes in without feeling tired like I had been during rehab. That didn’t sit well with my doctor, once again he brought up seeing transplant doctors, this time it wasn’t a suggestion it was you need to go. As we left that appointment we got my BNP checked, this time it was 9 times what it was back in March, I was then prescribed Diuretics and to stop rehab until the numbers came down. That though still hasn’t happened. Due to the diuretics I have lost all of the weight I had gained at rehab because it clearly was all water weight, a full 8 to 10lbs of water weight. I went from 84lbs to 76lbs.

On August 16^th once again my mom, Mac, my younger sister, and I met with the transplant doctors at UW. I had gone through the whole ordeal before 6 years to be exact, from meeting the doctors, going through all the evaluations and almost being listed. I was not ready to go through with it then. I felt I was doing well health wise and being pushed into it because my care was being switched from Children’s to UW. There was no talk about transplant; I thought they would let me get better from my health set back the summer before but no. I did get better, and was doing very well until last summer and being put on the Tyvaso. My doctor doesn’t want to put all the blame on that but I feel it made me much, much worse. I hoped by now I would be back to normal but at almost a year later I am not. It isn’t that I never want to go through with transplant, I am scared of the unknown’s, and the statistics that come with transplant. But realistically I feel the time has come for real this time. I don’t know if there is any going back to health before a year ago, and doctor doesn’t want me to get to a point where it’s too late to have transplant as an option. Although before I can go through evaluations once again I must gain 10 to 15lbs. Doctors have me drinking very high calorie drinks two times a day, I need to be getting in 1800 to 2200 calories a day which I definitely have not been. It has been hard having much of an appetite doctors say it could be due to how hard I work to breathe, and my heart is working but I have to suck it up and get to where I need to be.