Friday, February 26, 2010

What a week...

Well I have been run ragged this week but wanted to take a few minutes to update everyone on what has come to pass.

Monday night Denise and I went down to Philly and stayed overnight at the Sheridan. Upon entering the building I had one hell of an asthma attack and could not get enough oxygen in or air out, it was quite scary for the moment and I thought I may pass out. What a way to start the trip, I hate when that happens!

Tuesday was my follow up appointment at Penn. The day started with a barium swallow in which they identified that I have a hiatal hernia and gastric reflux (which I find funny because I love spicy food and very rarely get heartburn).

Then next up was the report out from the transplant team. The coordinator proceeded to talk about my osteoporosis, blood shunting in my heart, reflux and high PSA. Well other than the PSA this was all new to me! I asked were they sure they had the correct case file....jeez.

But turns out it was accurate, I do in fact have:
  • Osteoporosis in my vertebrae identified by dexa scan (treat with Vit D and calcium)
  • Heart shunting - they thought that the heart flap that usually closes up in an infants after birth may still be open on me. We begged the scheduler to get me an appointment that afternoon for an MRA with and without contrast to rule out the heart issue and we were able to do so. (I heard back yesterday and the heart issue is now fine)
  • Gastric Reflux (treat with a Prilosec like medicine)
  • PSA - retested via blood test on Tuesday, results came back high again (5.46 first test, 4.81 second test) so needed to see a urologist. Luckily due to the snowstorm there were cancellations so I went in this morning to have it examined (.....gulp!). At about 10:30 I was violated by a ham handed urologist who said my prostate felt fine (to him....), but a little spongy (I think he was trying to check my tonsils though....jeez). Both he and I called Penn separately and were informed that I can either wait 3 months and retest PSA level and if still high then get the prostate biopsied or get the prostate biopsied now if I want to be listed. So needless to say it looks like I have a prostate biopsy to schedule and get done in my near future...
  • Verified I'm negative on TB and CMV virus. The negative CMV is only a concern in that since I am a rare blood type (AB+) I may have to take a set of lungs that are positive for CMV and that could open me up to get an outbreak from them. The Dr said it is very rare to die from the issues, but if I was a common blood type he may advise more thought on weather to take lungs with it or not. But I guess beggars can't be chosers, if they offer me lungs CMV or not I'm taking them

After Dr H at Penn listened to me on Tuesday he recommended I do a few weeks of IVs since I sound so junky and am bringing up some nasty stuff. Yesterday at 9:00 I had a picc line put in and started on two IV AB (tobramycin and meropenem), so it's 1.5 hours of IVs every 8 hours for me over the next three weeks....

And that my friends and family is where we are at as of has been a trying week that I am glad to have in the rear view mirror. Good news in camp Fahr is one more hoop to jump through prior to listing at Penn. Then after the Penn issues are put to bed I will start on Columbia...sigh.....

On a secondary note I received news this morning that dear friends of mine are adopting a baby girl in March. I am so happy for them!! Congrats guys!!!


  1. I think double listing is a good idea, but maybe I should hold my breath (more?) until I get my confirmation from Duke. I'm also CMV neg and worry about getting CMV pos lungs. Hope you have an easier week this week!

  2. Well next Tuesday is my prostate biopsy I'll be happy when all this is done.

    Jess I know your on your second go round with the evaluation, I hope Columbia will use all the data from Penn in my case.

  3. Sounds like a crappy week. Things will pay off. . .this will all be worth it :) I didn't have a barium swallow until post transplant~ I hated it!! But luckily mine came back normal~ I hope next week is much better :)