Thursday, September 8, 2011

Questions for those @ Duke/update

I have a question for my fellow bloggers that go to Duke-that have been transplanted, currently thinking or evaluating for transplant there.

But first-quick update: I was discharged from the hospital Aug 15th-1 day before classes began. I spent 3 weeks in the hospital-the most I've ever spent since my transplant. I completed 7 days of thmyoglobulin. My low grade fevers ended up being due to C-Diff infection which completely wiped me out. I have now completed almost 5 weeks of oral Flagyl and 2 weeks of oral Vancoymcin. After returning home, the effects from the thymo were horrible, and still remain somewhat. I am slowly getting better. My oxygen saturations have been much better-upper 90s at rest and 88-90 with exertion (with no oxygen) which is better than 82-83 with exertion before the hospital and around 85-88 at rest before the hospital.

I am scheduled to begin photophoresis within the next week or two. I am thinking about getting a 2nd opinion regarding my chronic rejection and history this last year. Although I don't doubt I have chronic rejection, part of me feels like there is something the docs are missing. I am not 100% positive that I need photophoresis or that is the right treatment protocol for me right now, considering I've already done it twice in years past. I'm not in complete agreement with my docs on how much the chronic rejection has progressed. Although I only have 30-40% lung function, I'm not convinced some of that is due to only having lobes and not full lungs. I know Duke is familiar with living donor transplants.

If I do precede with getting a 2nd opinion, I will travel to Duke, as I feel its the best center that is the closest to me. So if you have any experience with chronic rejection or transplant at Duke-i would love some info. Even just general info about the docs and transplant team. Or-if any of you have had different treatments for chronic rejection at another center-please feel free to discuss as well as my options are open right now. I want the best for me, and my lungs have definitely deteriorated over the last year or so.

I am managing to make it through classes, but still get really wiped out. I started my 1st IV on my patient last Friday. Off to clinicals again tomorrow and again Monday.


Anonymous said...

Have you talked to Christy Hubbard Hamilton yet?


Jesse Petersen (CF Fatboy) said...

Contact Tricia Lawrenson, Jessica Newport, and CysticGal (Beth Peters) for Duke info. All 3 have had txps there.