Transplant Evaluation - What to expect
We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!
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I haven't read everything to be honest, but as a donor, we don't have as many restrictions. Our bodies aren't trying to accept something foreign. I have no restrictions other than a 10 lb weight restriction until my incisions heal.
I don't know where you live @beckyjohnson . I'm just about twenty minutes north of the twin cities. My husband and I rented an airbnb in Rochester. I stayed there before surgery and then he stayed there until we left to go home. I didn't have to stay in town because we live close enough if I had needed to return. I saved all my receipts for non medical purchases dealing with the donating, as you can write it off for tax purposes.
I'd you are considering the Gift of Life house, you do need to tour ahead of time. Perhaps try doing that while you are having your three days of testing.
Im not really good about following all of these feeds. I've been considering writing a blog of my experience from start to now.... and then add as my journey continues. It's a good thing to our my energy in to while I'm healing. Then future donors can read about my experience to help them in theirs!!!
@onecentwalsh That is what I call myself doing though I'm a bit inadequate because I was not able to recall all the tests & people I will be meeting during those 3 days. I'm about 2 hrs. from Jacksonville. Though it isn't that far under normal circumstances & traffic often increases travel time I'm sure it is a trial right after organ surgery.
Keeping non medical receipts for tax purposes is a great tip. So far I have not read anything indicating donors are allowed to stay at transplant houses. It would be nice to tour it either way just to see. As always it is a pleasure - thank you
@beckyjohnson, I am happy that you are moving along on this mission! I know firsthand how confusion the maze of tests and procedures can be. Makes your mind spin, doesn't it?
I kept a journal that began as a listing of bills for my records. And, as a recipient, I became very ill and wrote short blips on most days. It includes: procedures, how I felt, blessings, prayers, fears along the way. There are parts that I do share publicly, and other parts that are mine alone. It is my personal treasure:-)
Hugs,
Rosemary
@beckyjohnson GOL required a tour before being able to stay at the houses, and availability of rooms is also a factor. I do remember one donor staying at the house with a caregiver, as well as her recipient and their caregiver. Obviously stays for donors are much shorter than for recipients.
I doubt that the level of sterilization is the same for donors as recipients, as the donors are not given immunosuppressants. The transplant clinic office had a long planter of live snake plants when I received my transplant 7+ years ago. The transplant wing of the hospital allows no live plants or cut flowers because of the possibility of germs coming in on them. It is very easy for fungus to form in the water of cut flowers and the plants do have dirt, which is impossible to sterilize. GOL, following the lead of the hospital, also does not allow flowers or plants inside however the grounds are beautiful. Within 3 years of my transplant the planter and plants had been removed from the transplant clinic as well. Additionally, flowers and plants were addressed during the pre-transplant training. I have kept only one houseplant and my husband has taken over maintenance for me. It is a peace lily, which is possibly the safest houseplant to have unless you have cats that like to munch on the leaves. They are toxic to cats and mine won't leave it alone so I have had to move it to an inaccessible pillar.
You idea of exchange housing might work quite well for donors and would certainly reduce expenses. It would be wonderful for you to spearhead such a program. Since a pancreas is a death donation, I have not spent much time thinking about live donors. Thank you for the reminder.
@beckyjohnson. I toured the gift of life house in Rochester, I don't know if they are all the same. Donors are welcome to stay there for any visit relating to donation but a tour is required 1st & your caregiver is required to stay.
Because I didn't need a caregiver for my evaluation appointments or my 6 month post surgery check up (in a few weeks) they said I could get a note from Mayo saying I don't require a caregiver & GOL would let me stay there without one.
@beckyjohnson You made me smile...Thank you. For me it is more of the not knowing than confusion that gets to me. Though I haven't found anything I claim as my own - not for public yet I appreciate & love that you shared that. Because you shared that which I did not know it will be ok to cross that bridge should I come to it. Yes the maze does make my head shake if not spin.
@mauraacro I fondly just thought what would I do without you. I did research a little deeper about who may stay & decided I should call which I have not done. After reading what is available on the actual Jacksonville house website the "next question to come to mind" you addressed as well - that is "What if I don't need a caregiver until the actual surgery?" Thank you so much for sharing. That clears one more way in the "maze" as @rosemarya so aptly calls it.
@2011panc What a great explanation - thank you for sharing. It is always uplifting for me when I get to learn another viewpoint even when I do not agree. My college English argument & persuasion gets credit for shaping this characteristic trait in me. Everything you mentioned resignates in such a humble yet profound logical manner saying I appreciate it just doesn't express the warmth I get from your post. Thanks again
I am wondering about the best course of action to take after transplant surgery. I have 2 options. Stay at home myself with my husband home after work or constant care from my daughter and live with her. Both locations are very near to the hospital. I just don't know how much care I will need post transplant for a few weeks.
@beckyjohnson, @onecentwalsh & @2011panc exchange housing or Airbnb might be ok lodging for the pretransplant evaluation. At that time you can ask the medical team for their recommendation for lodging during the time of the transplant surgery itself. A social worker or financial worker may have resources to offer as well. Generally speaking there are less necessary regulations and a shorter recovery/follow up time involved for the donor than the recipient. The thing about the live plants is not about the plants themselves but is about the soil. It can harbor bacteria, viruses and fungi that are hard for a newly immune suppressed system to deal with. At least that is what I was told during my transplant experiences. The risk for problems, aka organ rejection & complications is greatest in the first months post transplant. It improves after 6 - 12 months and so on.