IVs done!

IVs were done & PICC line pulled on Friday, Jan 27^th! I felt good; had really not been coughing at ALL, energy good, etc.  White Blood Cell count was still 18.0 & due to that, one doctor thought PICC should stay & the Dr that ordered IVs in the first place thought it’s time to pull it due to how I’ve been feeling. One theory is that being on steroids can cause false elevated WBC counts and being on steroids may be a part of life for me, as I will be on them for a bit longer at least. I also have a feeling that some yeast is brewing as well & wonder if that can cause that number to be elevated as well? The plan is to do a CBC again Monday or Tuesday & see what WBC number is that day.


Yesterday was a great day--felt good, had energy, no coughing, no noticeable SOB, sats good, etc. We traveled 1.5 hours to have lunch with my Dad and even shopped for prom dresses for Dakota at a couple of stores.


Today I'm still doing pretty good; however, I can feel some obstruction :( and am bringing up a bit, but praise God it's not red or brown! We'll see what the day holds--sometimes I am a bit congested in the a.m. and do better as the day goes on. I plan to go to church and then to one store that sells prom dresses. I don’t plan to over-do it, but also have to live life.


As for St Louis—the transplant coordinator will see the transplant doctor on Tuesday & will discuss my case with him then. I would assume something will be set up for me by mid-week. I will advise of when the evaluation is when I find out. 

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