Closer to Transplant Time?

Due to recent health events, I am feeling that transplant time may be closer. It all started last Spring--I was getting winded with just about any exertion, which was new to me. Of course I can't jog or climb stairs without getting winded, but I normally didn't get winded walking from one room to another. I chalked it up to possible allergies/humidity. By the first of May, I knew something had to be done, so I asked my doctor about doing some IVs. I was admitted to the hospital for a few days to start IV antibiotics and I also started insulin at this time.

Long story short, the benefit of the IVs didn't last that long & I was back to getting winded with exertion again within a few months. The first of December, I really noticed getting winded and needing to rely on oxygen to get around the house, which was not the norm. At this point, I had slept with oxygen & used it with exercise for a few years, but didn't need it otherwise.

Then came the cold the week of Christmas! Christmas Day was spent in bed sneezing & blowing my nose. Of course, shortly thereafter, the cold moved into my chest and did a number on my lungs & I can honestly say I don't remember ever having felt worse!

I asked for steroids & to start IVs on January 9th. PICC line was placed and home IVs started on January 10th. Then came supper-time of January 12 and quite a bit of bright, red blood! Oh, did I mention that I was also on blood thinners?? Due to the fact that the bleeding didn't seem to be stopping & being on blood thinners (which turned out to not be an issue, long story...), I asked Dakota to call 911 and I got a ride to the hospital courtesy of Sedgwick County EMS. From what I understand, it was determined that the bleed was due to infection & inflammation.

So, long story short, I am currently still doing home IVs, have not had any bleeds since January 19 (and it wasn't too bad), and feeling better! It's nice not to be winded just walking around the house! The steroids sometimes make me jittery and anxious/nervous, but it is what it is.

Having said ALL of this, my CF doctor & my regular doctor agree that it is time to at least go to St. Louis to see where I stand as far as lung transplant is concerned. The wheels have been set into motion & I am awaiting a call from Barnes Jewish in St. Louis.   I will update more when I know more. In the meantime, have a blessed day J