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Living Life after your Transplant

Transplants | Last Active: Dec 10, 2023 | Replies (118)

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@joko

Thanks for sharing these messages. Looking back 35 years (April 30t, 1987 at U WI Madison cadaver kidney transplant), here are a few observations from a long, personal journey with End Stage Renal Failure.

1. You must advocate for yourself. Assertively. Joann Nett, who headed patient education for us transplantees at UWMad, taught me to gather information from other knowledgeable sources and push hard for what you need. Perhaps that's why I ended up at Mayo because the doctors are educators.

2. You are more resilient than you know. Live life like this is your last day. Amit Sood at Mayo has written extensively on resilience and says that we have so much to be grateful for. Each morning I try to give thanks for three things that I appreciate. My wife is usually at the top of the list. So I've lived life like anyone else. (I mean people without chronic diseases.) However I exercised religiously --though I'm as lazy as anyone on some days -- watched my food, drink and medications. I guess you'd say I eat the Mediterranean style. Living where I do, good fruit and produce are abundant until winter.

3. Covid19 has made me super vigilant. I've become almost paranoid about people without masks and angry about people who do not get vaccinated. Yet I try to understand their situation. This includes family members. I wash my hands and avoid crowds as others have mentioned. But I'll be damned if I'm going to be a recluse. I've gotten back into groups and workouts at the Y. But I'm only doing small groups that are far apart.

Hope this helps someone understand the complex road all of us face when we get a transplant and have to deal with all of the changes that a new kidney brings. Each of us faces a different journey. So have fun along the way even though some days look bleak.

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Replies to "Thanks for sharing these messages. Looking back 35 years (April 30t, 1987 at U WI Madison..."

@joko, very insightful and well stated!

Thanks, @joko You expressed a lot of what I feel. I sometimes do feel angry at those who won't get unvaccinated but I'm sure that most of them feel they are doing what's right for them, and that eliminates the concern for others. It is frustrating though when they will simply not believe the science and have delusional ideas about certain aspects of the vaccine. I just stay away from anyone I know who is not vaccinated.

Like you, I am not a recluse. I do wear a mask whenever inside and I don't go to stores when I know they will be crowded but I do go. I have not returned to my health club, which is considered to be too high risk but I think if my transplant doctor could see it he might realize it is not bad. It's very clean, people are constantly cleaning everything... it's a nice club, voted the best in NH. For now though I am abiding by what they advise. The one area where I may not is that I know they would not want me flying across the country but if my antibody test shows a decent amount of antibodies (I should know in a couple of days) then I will probably go anyway to see my first grandchild.
JK