feeling down post transplant

[Beauboy]

following a successful live donor transplant three years ago I have been finding it difficult to get back to my old self. Shortly after the transplant Covid reared it’s ugly head, I have avoided Covid so far, but feel with Covid still around and my immuno suppressed system I find it difficult to socialise with any confidence. Does anyone else suffer from this and does anyone have any suggestions

[MToQ]

Absolutely. You are not alone. I still haven't gone back to indoor restaurants. Rarely outdoor ones either. No indoor entertainment venues. And rarely to friends' homes. If I do, I sit by an open door or open window. I try to only socialize with folks that are still super covid conscious/respectful. I still wear masks indoors or in crowds, even outdoors.

I try to make plans with one other family at a time or with 1 or 2 friends at most. Try for daytime and daytime activities so we can do it outside. Either at a park or somewhere with lots of spaced outdoor seating. I ask friends to take a rapid test prior to meeting up.

Walking, hiking and biking are our go-to's. We bring picnics and prep individual servings to make it easier and safer to share. I bring soap wipes and hand those out as well. Each family sits on their own chairs or blankets to maintain social distancing.

I ask that if they have any symptoms to please let me know. I rather make the decision than have it made for me. Some are worth a bit more risk while others do not warrant any leeway.

You can do your part by getting enough sleep, eating healthy and manage your own expectations. Use a good N95/KN95 mask unless you are actively eating or drinking

Good luck! Stay safe.

[Porter20]

I just went to California by plane stayed a week. It was my first trip since transplant that far away. I just double masked on the trip out and back. I try to stay away from those coughing or sneezing. I had Covid after my daughter’s wedding but did fine no medications. I decided early on to live my life but not be stupid. I am headed to NYC on Tuesday doing the same thing. I also use mouthwash and hydrogen peroxide on a q-tip in my nose after being around lots of people/ germs. I checked with my doctor first.

Transplants are meant to live!

Get out there!!

[Jayhawker]

in addition to masking my transplant center nurses and doctors just emphasize hand washing and use of hand sanitizers while I’m around others. I’m just 3 months out with a deceased donor kidney that is working incredibly well. I have to rely some on Uber and Lyft gif transportation. (I have an unrelated visual impairment so no longer drive.) I’ve talked with the transplant center about this specifically due to worry about exposure to COVID. They have really stressed hand sanitation as very important. So I carry hand sanitizer with me and sanitize as soon as I leave the Lyft ride etc. so far so good!

Jayhawker

[BlurpleIsBest]

Congratulations on your successful transplant. I don't really have suggestions or anything to add to previous people who have replied. Rather, I just wanted to emphasize that you are certainly not alone in this. I feel like I have perhaps permanently changed from the relatively outgoing, adventure seeking person I was pre-covid into someone extraordinarily risk-averse and sort of scared to engage with people in social settings. I had my first transplant in 1998 and have thankfully been able to do lots of terrific and adventure-y things but have been basically holed up since covid, and my husband along with me. We're still kicking it old school like covid 2020 with pods and bubbles while everyone around us has moved on. My husband and I are actively discussing what this year and our future looks like because we both believe this approach is not sustainable for our mental health. We are talking about taking a plane trip this summer and I couldn't be more excited (and nervous).

[Porter20 in reply to BlurpleIsBest]

Go for it… transplants do us no good if we don’t continue to live fear free. Just pray, wear a double N 95 in crowds, use hand sanitizer and when you get home brush your teeth use a bit of hydrogen peroxide on a q-tip in your nose and gargle.

All approved by my doctor friends.

[OriginalDanSuush in reply to BlurpleIsBest]

If you don’t mind me asking what happened that you needed a second transplant?

[BlurpleIsBest in reply to OriginalDanSuush]

Hi OriginalDanSuush. My docs said is was gradual nephroxicity from Tacrolimus, which I was on from day one of transplant (along with CellCept then Mycophenolate and also predisone). My creatinine and urine protein levels started increasing around 10 years in and I was placed on the transplant list at year 14.

[PostivelyJo]

really ! In your nose . What a good idea .I’ve got peroxyl but was going to ask in this forum what is a cheaper alternative ….do you use it neat?

[PostivelyJo]

you have been through so much, we all have. I feel that if I look to the outside world for reassurance that it’s safe I won’t find it. I needed to look inside first and reassure myself first. It’s not easy. Covid can become a handy place to focus all our fears on and slowly it reduces us and reduces our lives. Fear does that. I remind myself that sure Covid could get me but so can a lot of things. I could get hit by a bus or eat something dodgy ….

I was in the middle of a toxic divorce a year after my transplant when Covid hit . I didn’t have the headspace to focus on it and I think it really helped.

Good luck. Summer is coming