Re: Re: Transplant evaluation.

[Guest guest]

Steve ... sounds exhausting alright but now you have enough information to make a good decision.

God Bless your journey...

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Transplant evaluation.

Hi Zena,It's 10pm Friday night, here on the East Coast of the US, and I just read your post because I have just gotten home from my 2 day, in-patient, transplant evaluation at Brigham and Women's Hospital in Boston. It was a long 2-days, with lots of tests, lots of blood being drawn, and lots of consultations.On Day 1, I checked in at 8am and was immediately sent to the blood lab where they drew 23, yes - that twenty three! - tubes of blood. They are using the blood for a score of different testing, including tissue typing. After the blood work, I was off to the cardiology department for an EKG. That was followed by a trip to radiology for chest x-rays. Next, I was admitted and then went back to cardiology for my cardiac catherization. This took about 40 minutes once in the procedure room after which I went to recovery for about an hour. Then I was taken to my room where I had to stay flat on my back for another 2 hours, at the end of which I was finally able to sit up and eat something (For the first time since midnight the night before!). By this time it was 5:30pm. After dinner I was seen by one of the transplant team doctors. Around 9pm the nurse came into the room and told me they were sending me off to radiology again for a CT scan. Once I got back from that, I had some toast with peanut butter and some juice - this was because once again, nothing to eat or drink after midnight - in preparation for my tests on Day 2.Day 2 - up early and off at 8am for an echocardiogram, followed by more blood work, then PFT's, and a gastric emptying study. The later involved eating a hard boiled egg which had been treated with a radioactive ingredient so that it would show up on a special camera - which I had to lay under, flat on my back, for 90 minutes while they tracked the progress of the chewed egg thru my stomach and intestines. Next up, an abdominal ultrasound, where interestingly enough, they found that I had a gall stone - one the doctor said I have probably had for several years! All of this kept me busy until 3:30pm, when I was finally able to go back to my room and get ready for discharge. However, before I could actually leave, I had to meet with the transplant team social worker, dietitian, and psychiatrist.I finally was discharged and got to leave for the 2 hour drive home, at 7pm.All in all, an exhausting 2 days, but much better than dragging the regimen of testing and consultations out for a period of months, with one a week or so. Yes, some of the information was scary, but much of it was also very reassuring. One thing that worked out really well for me was that the monthly lung transplant support group at Brigham and Women's Hospital, was Wednesday afternoon, the day before I had to check in. Since my check-in time was 8am, my wife and I ahd already decided to go down on Wednesday and stay overnight. Attending the support group meeting was a real plus! Besides a number of people like myself, in various stages of the pre-transplant process, there were also several post-transplant patients. Their feedback was most helpful! That and seeing them sitting there in the peak of health, with no tubes, no tanks, was wonderful. It really helps to get the input like folks like them have already been thru it.I also have bought the book which someone on here recommended recently... "Taking Flight" by Joanne Schum. I would also highly recommend it - it is an excellent compilation of stories from people who have had lung transplants, about their journey to transplant and what their transplant has meant to them and their loved ones.I am feeling much better, much more confident that this is the right path for me - that whenever it becomes medically necessary, I will take the step and get the transplant.Steve aka...Knip Dx 9/07 confirmed via VATS 12/0756 NH>> > I've been back to see the transplant team today.> > My head is spinning as we've been talking about the more unpleasant> facts, figures and statistics, but all things that I need to know to be> able to make an informed decision in the end.> > As I have made headway with my weight they have decided to go ahead and> book me in for the transplant admission, probably for january next year.> It's a case of going in on the monday, having a load more tests until> wednesday night, then all my details going to the transplant board on> thursday morning, when they will tell me whether or not I can be listed.> At that point it is my decision whether to BE listed or not.> > He is disappointed that I didn't get to see the dietician sooner, and> therefore haven't lost more weight, and also that I still haven't been> started on any treatment for the PH. This has got worse. I thought it> had as I have been feeling more breathless, but my pft's have remained> fairly stable. However I have received a call from that particular> hospital today, from the admissions, (I have been told that they want me> in for a couple of days to put me on the meds and make sure that they> don't give me any unwanted side effects) so perhaps that's sorted now.> > I'm feeling quite ambivalent about things at the moment as it's too big> to think of right now. I know they have a responsibility to tell me the> down side, but today, I've just heard too many of them.> > Love Ze xx>