"Difficult roads often lead us to beautiful destinations."
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 16th
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.