Friday, November 26, 2010
Tuesday, November 23, 2010
Yesterday we received some mind numbing news. We found out that my bronch showed A1 rejection (the lowest type) & that my CMV level is over 4100 (should be 0). Needless to say, Denise and I were beside ourselves trying to understand all of this since I have been doing so well. My PFT’s are at their highest level since transplant, weight is up, and I am feeling great overall. All the healthy markers coupled with the bronch last Friday that showed the pipes looking great with no secretions or gunk at all you can see why we would be optimistic.
With all this in mind hearing that a level that should be 0 showing up at over 4100 sounds crazy, right?! Well, maybe not…
I was talking to the home healthcare fellow and he made us feel so much better. He asked me what my CMV level is. When I told him the fellow said that it’s not bad at all. He said they have 4 other transplant patients currently on service and all are much, much higher; the highest being 36000. So then the next time I spoke with the transplant coordinator I asked her about this and she said they have seen people with numbers over 200,000 that pulled through just fine. So now we have a bit of relief. We also heard from our many transplant friends on Facebook who have had numbers in the 100,000s or higher early on and are now 8 years or more post transplant.
Initially, HUP wanted me to get admitted right away to start treatment, but I was able to talk things out more. Everyone knows hospitals are dead on weekends and holidays anyway so I would just sit there with my thumb up my ass wondering why I was there anyway. I have done home IVs myself more times than I can count already, what is one more session.
So the plan we settled on is have a PICC line inserted (done this afternoon at our local hospital) and start IV Ganciclovir at home. Tomorrow we will head to Philly for blood work to see if the reason the CMV numbers are up despite being on prophylactic Valcyte (med that is supposed to keep the CMV in check) is due to some resistance to it or a wrong dosage. We will also see the transplant coordinator or doctor just to touch all the bases.
For those of you who don’t remember or started following the blog post transplant, my body did not carry the CMV virus but the donor lungs did. We knew this when we accepted the offer of lungs and had to sign a release. We were advised to take the lungs with my blood type being rare they thought it was well worth the risk.
As far as the A1 rejection goes, they will not be treating that at this point. It is not unusual for them to not treat A1 at all. Sometimes they just do a follow up bronch sooner than usual to see if it went away. If they do decide to treat it they would just give me high doses of Prednisone anyway.
We are used to the “normal” CF craziness but the post-transplant complications are all new to us so this is tough. Many of our CF blogging and Facebook friends have been very helpful in providing us with their feedback and personal experiences. Thanks guys/girls!
This a prayer shawl that I received from several different Lutheran churches in Louisiana. With each stitch, a prayer was made for my health.
Friday, November 19, 2010
Friday, November 5, 2010
Wednesday, November 3, 2010
Yesterday evening the CF community lost one more person to this shitty disease and that's ONE TOO MANY! His name is Gessner Brown and he has gone through one hell of a fight. I got to know his wife Lisa through one of the transplant websites that I am a member of. She was the second CF spouse that have ever spoken with. Please send Lisa strength to get through this horrible time. Gess was in the process of getting listed for a liver and double lung transplant but his deteriorating health did not allow him to make it to the post-transplant side of CF.