Post-Transplant Exposure

[frebusmaxwell]

One of my kidney doctors suggested I stay out of circulation for 4 months. Has anyone else been told that? Does that include the nail salon, church, etc.?

[Herkidney]

Hello. I received my kidney transplant four years ago and I was told the same thing. The only place I went was to my doctor’s appointments. I did go out for walks in my neighborhood where it is not crowded with other pedestrians and my spouse would drive me to different places to “sightsee” from the car just to get out of the house. I did go to my kid’s sporting events, but I stayed in the car and watched from the parking lot. It is important to follow the transplant center’s advice on being out of circulation because your immune system will be so weak. I did have very few visitors, but they would come one at a time, would sit across the room and we would both wear masks for no more than 15-20 minutes. My experience was before Covid though. Given the circumstances with Covid and immunocompromised people like us, if I had my transplant today, I would not have any visitors. It was not easy, but I felt that it was a small price to pay. I did get my haircut before my surgery so that at least my hair would look nice for a little while. 😄

During that time, I caught up with a lot of television shows that I had missed and I read a lot. Best of luck to you!

[Herkidney in reply to Herkidney]

I even missed out on the big family Thanksgiving but I still think it was the right decision for me.

[LavenderRabbit]

I think we all are told the same thing. It is because of the super large doses of Immunosuppressant drugs that are given at surgery. It takes time for that to get out of your system.

[frebusmaxwell in reply to LavenderRabbit]

Don't you stay on a maintenance dose of immunosuppressants for the rest of your life? Right now (3 weeks out) it seems the doctors are trying to find that "perfect dose" for me.

[LavenderRabbit in reply to frebusmaxwell]

yes you do take them for the rest of your life, just at a lower dose.

[lkhenderson]

Yes, I was told that and I followed it. You have to allow your body time to adapt to its new normal and understand that you are immunosuppressed at much higher level in the beginnning until things settle in and sort themselves out. You need to follow their instructions and take the time to heal so you can live. It will pass quickly, I promise. I actually soaked off my nails ahead of time because I knew I could not go for refills and hopefully your church offers a streamin service or you can watch another service until such time as you are ready to roll. Best of luck to you!

[pops81]

yup, this has been roughly the same policy for 40 years +...sorry buy especially places like church, a movie theater or large indoor gatherings and close contact with people outside ur bubble (nails). You might think about reaching out your church leader for private consel during this time period. Be well, stay healthy..

[DexterLab]

I agree with Herkidney. I was told to not be around people for several months. They really knock out the immune system at surgery, and it takes time to recover. They will also be reducing the immunosuppressant drugs iver time as they see how you and your new kidney get along together. So I missed church, did WFH. The pandemic is all the more reason to be cautious. Good luck.

[Darlenia]

Yes, that was protocol for my transplanted hubby too. This is a critical period of time where you don't want to catch illnesses or diseases of any sort. Once the immunosuppressants are reduced to optimum levels and stabilized, the restrictions ease up.

[horsie63]

So it's just me and my husband and he's the one who went shopping during the worst of the pandemic. I worked from home when things were ticking up around here. We got vaxed and boosted. That said, he went to a family wedding out of state July 1 and was home July 5. On July 6 he started testing pos with the home tests. On July 8 I was sick as a dog, tested pos at the docs and then she got me monoclonal antibodies. Even so I was sick for at least 2 weeks. I don't have a transplant yet but even me doing all I could to stay out of circulation my husband went out and brought covid home with him. What do the docs say about other household members going out and about?

[Gardner-NY in reply to horsie63]

Hello horsie63 , my spouse has the kidney transplant and I am fairly healthy. We both since his transplant (many problems happened for 14 months then covid arrived), so we've been following the same rules since around Feb 2019 to now: we don't allow people in our house nor do we go into theirs, no restaurants, no movie theatres or museums, no crowds, no bus/train/plane travel, no to just about everything we enjoyed doing before his transplant. WE do meet friends outdoors, but only 2 or 3 at one time and our cold weather is 6 or more months a year, so this is very difficult to navigate. So to be honest, the two nephrologists my spouse sees knows how rigid we live and they have no comments to give except "keep doing what we are doing, we know research is slow for answers." My spouse was also told to not take Evushield by these 2 doctors including transplant center and no Paxlovid. WE both stay boosted and basically live in a bubble most of the time away from people. It has affected our mental health big time. I see a counselor, he refuses, but I don't see how my seeing one is helpful. I have tried to embrace zoom type of interactions with friends and hate it, so stopped doing it. I'm working hard to figure out how to live and feel joy again. WE always wear a mask doing our grocery shopping and we use a drivethrough pharmacy when needed. If I got covid, I'd check into a motel is our plan. Our home is too small for me isolating. I'd love to hear more people talk about what they are doing that is 'normal' and safe. Last time we saw family, who live 16 hr drive was spring 2018. I wish you well and take care!

[horsie63 in reply to Gardner-NY]

wow that’s got to be tough. Where j live I have no close friends and as a some what introverted person isolating during Covid hasn’t really bothered me. We also have a small house and the hotel idea is a great one. I’ll make sure to kick my husband out next time he brings something home. Lol.

[Gardner-NY in reply to horsie63]

Hello, my mental health as an extrovert has been extremely compromised due to covid19 isolation and the isolation we lived due to kidney problems for 14 months prior to covid arriving. I went into my first in life depression May2020. My counselor of three years retired April 2020, and I waited 3 mos to get new one June2021. The time from the transplant happening through now has been the most challenging time in our 45 yr marriage. Makes the 9 mos of chemo my spouse had long ago seem like a picnic (his words). We are both struggling in our mental health. We live in the day, grateful to have each other and don't plan ahead anymore like we used to do. I am losing friends like sand in an hourglass. I've done research and a person in depression "does" lose friends for reasons like: don't know what to say, feel uncomfortable around you, and more. We feel so stuck.

[WYOAnne NKF Ambassador]

Yes, especially in these days of COVID. Right after a transplant your immune system is being suppressed so it makes you real susceptible to getting an infection. Go to your doctor appointments and labs - that's it. With time your dose of your immunosuppressant meds will be reduced as your doctors find the "right" dose for you and your body will get accustomed to the dose. One month after my transplant I came down with a virus and wound up in the hospital. So, be careful and listen to what advice your doctor tells you.

I am almost 23 years out from my transplant and I still take immunosuppressants. Early on my nephrologist was worried that I would get COVID. As of today, I haven't caught it.

I have a transplant friend back in WI, that is 18 years post-transplant, got COVID and lost her transplant as a result. She is back on dialysis.

So please be safe. You can have your groceries delivered, my pastor called me weekly and gave me a blessing over the phone. Do what you have to do to be healthy. These first few months are so important.

[ILMA54]

I had my transplant in July 2021. I was told to stay out of circulation for three months. The first month, the only persons allowed to come to the house were my home healthcare nurses (2x per week). For the next two months, I did lab work at my local health center 1X per week. Since lab tests were (and continue to be) scheduled, that minimized human traffic at the lab. At my three-month check-up, they gave me the green light to go out into the world but to avoid large crowds or crowded places.

I think I stayed away from church services for 4-6 months (I watched them online). I returned to the office after three months, but I was one of a handful of people back then. Since I could close my office door, that helped. I still mask whenever I go to the grocery store, the fitness center, church, and work when I am out of my office.

I got my first two vaccines pre-transplant. Despite all these precautions, I got Covid-19 at a family wedding at the end of July. I masked the entire time I was at the wedding except during the rehearsal dinner. It turns out I was sitting next to someone that got Covid the following day. My symptoms were relatively mild, but I did go ahead with the monoclonal antibodies.

[DonorMark]

I see some good reasons and sharing of experiences in comments so hopefully you just wanted to know what’s in store for following your Dr recommendation. But very confused as to why you are asking this question? Are you questioning the Dr recommendation and looking for others who got the same suggestion because you really are concerned about the 4 months of isolation? You suffering from FOMO? Really? You were just given a lease of life. Without stating the obvious with the ongoing Covid pandemic and the many people with no regard for the at risk…if I was your donor I would take great offense that you seem to be questioning your Dr suggestion. Your donor (if living) was willing to go through the whole vetting and then actual surgery and recovering phase over a period of 4 -6 months at great personal & possible financial risk to allow someone to have the gift of life. If deceased donor, the donors family or living donor would be greatly offended that you are more concerned about not enduring a period of isolation just so you can return to some semblance of normalcy like getting your hair or nails done. There are many people waiting on a kidney donation who gladly isolate to ensure a successful transplant and would trade places in a heartbeat to be in your shoes. Suck it up buttercup and listen to your doctor. You have plenty of time to go to church, get your nails or hair done. Hoping for a successful and complete recovery for you otherwise.

[Bax509]

I don't know anyone who is NOT told that. Your body has a lot of adjusting to do and you are highly susceptible to any germ around. So, yes, that includes nail salon and churches - anywhere where there is a group of strangers who may be carrying something that could mean life or death to you. Think of this as the pandemic on steroids.

[JackN]

Interesting, I wasn't told that at all (2010).