I contacted many (pretty much every center) and was declined an evaluation. Until I called UPMC and spoke to a pre-transplant coordinator names Paul. I explained my situation and where my health was. I also included the one thing that should have "disqualified" me as a candidate. . .Cepacia (type 6 Genomavare)
Paul said he would get back with me and tell me when my evalutaion would be scheduled. OKAY, I never got a date and since it was a very long trip and my health was declining. . .I took on the responsibility of calling Paul back and kindly reminded him that I needed an appointment. So it still is so important to be your own advocate for your own health!!!!
I flew to Pittsbrugh on Dec 2nd, 2007. I had to take 2 airline approved oxygen concentrators becuase I was on over 6 liters of O2. My first appointment was on Monday Dec 3rd.
UPMC Dec 3rd 2007- doing PFT's
Dec 3rd I did a lot of bloodwork, x-rays, PFT's and my 6 minute walk
Dec 4th I did EKG, and CT scans they also did a Dexa scan to check my bone density.
Dec 5th I met with Marleene who was the social worker. They went over my mental state and my support system along with my Insurance coverage. I believe I met with some of the surgeons and sat through a Q & A pre-transplant meeting, where we learned some great things about facts and myths of transplants.
*Note* I was pretty sick and much of my evaluation testing is foggy to me. My husband helps me remember what happened.
On December 6th I had clinic where I met the CF/Transplant doctor Dr. Pilewski for the first time. By the time I got to clinic and saw him I was really not there at all. Dimentia, pain, headaches, and I was so tired I wanted to just sleep. I was able to talk to the doctor and told him how much I wanted a transplant. He ordered a blood gas level to be taken which came back at like 120. I was addmitted into the hospital immediately. I do not remember much of anything after that point.
Dec 7th my CO2 levels were still climbing, I was in a lot of pain and I was not aware of my surroundings. A decision had not been made yet whether I would be listed. Bryan had to make the decision to have me put on a ventilator in order to keep me alive. UMPC transplant team held a meeting just to discuss my case and agreed to try to save my life. My coordinator worked late and had me listed by the end of the day. . . .
December 10th: Bryan got the call that lungs were matched and I was in surgery all day getting the gift of life.
I hope that helps those of you out there who are starting this process or have even ran into some road blocks already. They run alot of test and check many aspects of your heatlh and the condition of your other organs. My other organs looked good, my heart was enlarged on one side but it was not too damaged and repaired itself after transplant. When you don't use your oxygen, it causes your heart to work way too hard hence causing enlargement. . . please take care of your heart so it won't be an issue when you need new lungs.
*Just remember: Don't just take one center's opinion of your case. Every center has different criteria and ability to take on different/ more complicated patients. You would be surprised at how much hospital politics play a role in who gets listed at what centers. They are a business. MOST of them are in business to save lives, but they have guidelines and success rates to keep up. Larger centers who do MORE transplants a month/year are more likely to have the ability to take on more severe/high risk cases. SO contact them all if you have to. Contact them more than once. Don't give up on a transplant if you really want one.
You will hear from many patients who were transplanted at many different centers sing the praise of their center, because there are many great hospitals with talented and amazing surgeons/doctors. Find the right center that fits you :)
Also keep in mind that Transplant teams want to transplant compliant patients who will be able to do the follow up care and routines that are post transplant. Being compliant now will help them know you will take care of your new lungs. Post transplant has some pretty strict regimens and they are LIFE or DEATH. You trade one disease for a new disease that offers better quality of life.
*If you're interested in Contacting UPMC for a transplant call 412-648-6202. Then Push #3 and ask to speak to a pre-transplant coordinator.
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