Living Life after your Transplant

With so many new members who are beginning the transplant process, or have recently transplanted, I thought it would be a good time to reactivate this discussion. I find great comfort and confidence in learning that I am not alone. How about you?

I invite you to start at the beginning (2016) and enjoy – as you meet and learn from others who have shared their expert tips. We are never alone, and we are here to support each other. Of course, as always – Please share your thoughts to the discussion. You are the new generation of transplant recipients who are becoming "experts with living safely during the Covid19 era"!

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.

@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

Mass General sent out a general communication today to all of their transplant patients. They are still advising no air travel. I presume, although they don't mention it, that would also mean no train or bus travel.

Mass General seems to have a history of being very conservative with their transplant patients so I am just wondering if other transplant centers have also advised against air travel. We flew to and back last week from a 5 night trip to my son's across the country and are tentatively planning to return there for Christmas. I am very ambivalent about this and of course don't want to endanger my health.
JK

Since purchasing a condo in the Chicago area (a year ago) I have traveled back and forth to Arizona more than 6 times. I am overly cautious and am like a crazy lady in the airport. Here are a few tips: Double mask or mask with face shield. If I can, I purchase first class seats - using my miles. If not, I choose a window seat away from the aisle where everyone passes. In the airport, I wear plastic gloves and carry a zip lock bag of wipes with me. I try to arrive at the airport with as little time possible without missing my flight - check how busy the airport is, etc. Checking my bags outside helps - if that's available to you. I carry an empty water bottle and fill it up inside the airport. Not bought bottles.
I often bring along snacks as well. Social distancing through security checkpoints can become an issue. If you set the example and stay six feet back from the person in front of you, hopefully he folks behind you will see and follow. I used to bring an umbrella and carry it over my shoulder and no one wanted to be poked in the eye behind me.
I wipe down my luggage after retrieving it from the carousel. i have not become ill from any of my flights.

A college friend of my is a travel nurse and is on a four months assignment in Arizona. Since he lives on the East Coast, I was hoping we could meet for dinner while he is only two hours away from where I live now. Unfortunately, he was assigned to work on the Covid floor, so I decided that it won’t be safe for me to be around him. So sad that I had to cancel!

Thanks, @estrada53 Those are excellent tips. I was very careful on the flights we took in the last couple of weeks, perhaps not quite as careful as you are. One thing that would be impossible would be arriving at the airport as close to departure as possible - my husband is completely fanatical about getting there very early, to a ridiculous extent.

Even with precautions though, I wonder how many hospitals advise their post-transplant patients to be so cautious and not fly. Unfortunately, we do not have miles to be able to fly first class and the difference in price is prohibitive.
JK

@alive It really is so difficult to continue to adhere to strict restrictions. My husband wants to go to his son's house for Thanksgiving but I know his two adult daughters will not have been that careful, they are two young singles, living in the city. I really don't want to go there and have to have a mask on the whole time, which of course I couldn't do during dinner.

To me, and I have read this to be true, one of the biggest risks is eating in restaurants because no one is wearing a mask while they eat. Eating Thanksgiving dinner there will be akin to that.
JK

@alive, I can certainly understand your disappointment, but you did what you know you must do. Your friend who is a nurse, will most certainly understand.
As transplant/immunosuppressed people, we know first hand the fragility of life, and we will do everything possible to protect our lives and those of our family and friends! You both deserve to be commended for this heroic decision and all of those you make each day!