Life since transplant has took its toll on my mental health. The team at the transplant clinic have reassured me that transplant is a big thing and it’s common to feel like this with adapting to life after transplant but I don’t think I was prepared to feel like this after transplant and really did think transplant was the end of the road but I’m struggling mentally now more than ever.
I am seeing a renal counsellor but I suppose this is me reaching out in hope to talk to someone in the same boat.
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transplantwarrier
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It'sbeen 11 years. I couldn't accept transplant anytime. I saw counsellor and tried antidepressant. But There is always sadness inside, pitying , mourning for myself. I was so depressed this year, gave up some medicines. Blood lab came bad etc. Anyway ,nowadays I am running away from myself by travelling world. I am now in Asia. Supressing feelings by daily activities. I have no desire or goal for future . Feeling sometimes tired.
I can totally relate to the suppressing feelings part by keeping busy. I worry about the future because I just seem to push through every day by distractions and I worry it’ll always be like that
Been there. I had always been able to control my emotions but the combination of drugs and transplant was too much. I felt that I should be able to handle it but no. I gave an anxious call to my team and the doctor was put on the phone. He made all the difference. I justed needed someone to say it was going to be OK. I also got great support on the forum from others who had similar experience. But the doctors voice was a turning point. Find that someone you trust and respect and share your feelings. And be ready to listen. Take care and continue to reach out.
My spouse got his transplant 4 yrs ago recently and just told me due to the medications for antirejection, he feels empty/hollow inside all the time. He never had this feeling until he was on these meds and I did my own research and these feelings 'can be a side effect'. Just sharing and "I" as the healthy spouse have been in counseling without alot of improvement to find myself whom I was before transplant overseeing his care. I hope you find the best answer for your situation trnasplantwarrier. Everyone's journey is very different and I can understand what you are saying, I see it in my spouse of 45 yrs
My husband may be getting a transplant in the coming month. I’m a burned out 4 year caregiver. I’m very concerned about my ability to cope with what’s ahead and his recovery physically & mentally. Sounds rough em from what everyone is saying.
My only recommendation to you is have yourself a very good counselor now and not wait. THis person is not judgemental and a professional. Friends and family to me is very limiting in giving me insights on things I may need to change to get through the challenges that transplant may happen. Maybe your spouse will have a superb outcome after transplant and I hope that is the case. Everyone is different. My spouse had cancer at age 30 and had 9 mos of chemo and the 14 mos after transplant were very difficult with assorted problems and now with covid we still don't live a carefree lifestyle. We only started taking baby steps last month to do a few normal things. If you don't exercise often, start walking or something. It is the only thing that helps my mental health so far in a temporary way. Write me anytime. Take care of yourself so you can take care of your spouse when needed.
You are so courageous! You also have the gift of so appreciating life and each day because, unlike the typical person, you have had to fight for it....AND you are winning!
I am a psychotherapist awaiting transplant and in dialysis. I look forward to helping others pre- and post-transplant, especially going through it myself.
As Deepak C, says, "surrender to uncertainty everyday." Because every past moment has already been lived and is in the past, life is always lived in the current moment and the next moment and every day for everyone has uncertainty. Surrender, accept and enjoy!
I hear you.I went thru hell the first 3.5 months and i mean hell with side effects.To where finally in the last 3 weeks i started feeling good only to find my creatinine rising still and that the tacro i was on was damaging my kidney as they werent properly following up on my bloodwork that i was religiously doing.I would have to constantly bug them about what is going on.Finally after biopsy which should have been done a month earlier,found out that 50 to 60% irreversible damage to kidney so doctor freaked out and switching me to sirolimus.Never once was i told that tacro was still toxic to kidbey even if at right levels but over time is slowly killing the kidney and as my kidney wasnt a 100 good donor to begin with,the effects really matter.So now im back to square one with what is this sirolimus side effects going to do.Im already lost most of my hair,hands shake constantly,face all puffy drool constantly from Right side of mouth which i think now is a .ild form of the guille barr syndrome side effect .Needless to say i have fallen into deep depression thinking i went thru all this hell for what,to have this kidney fail and then add a bunch of other health problems to me like high cholesterol,which for sure happens with the sirolimus and god knows what other side effects as im very sensitive to drugs and i have ibs.I have pkd and was on dialysis 3 times a week but other than that i was in excellant health which i know would have gotten worse as kidneys had failed more. and dialysis sucks but man they really dont let you know what you are in for or what to watch out for or follow up good here where i live with transplant people.I actually contracted covid while in hospital after transplant cause they had 8 patients stuffed in one small area and people going in and out! ThenI contracted a superbug from being in hospital getting iv covid drugs and then was put in complete isolation while they figured out what antibiotic would work that wasnt harmful to kidney.I still had to take one iv 3 times daily for 2 weeks.Talk about depression during those 2 weeks.Like i said a complete shit show and just when i finally think i made it thru this biopsy reveal setback
Wow! You have really been thru the ringer. Is your kidney working now? I am scared about the cost of everything. My Cobra Aetna insurance from where I worked until retiring on disability ends on 05/31/2023 and then I will just have Medicare and cannot apply for any Medicare advantage plans now because the American Kidney Foundation that pays my Aetna premiums won't pay if I have anything other than regular Medicare. I guess I will have to do payment plans but pharmacy's don't have a payment plan. The cost of my phos blocker, Velohoro is outrageous at about $2000 or more a month. Who can pay that? God bless us all!!! Happy Holidays!!! 🙏🙏🙏🙏🙏🙏
Fortunately i live in canada and i dont have to pay for anything,bloodwork,tests,surgery,meds,zero.I cant imagine the stress of that on top of trying to deal with all the physical and mental stuff too and especially as so many meds changes and bloodwork for first few months my house is like a pharmacy!
Have you considered adding a Medicare supplement? I get my premium paid for by the American Kidding foundation. All I have to pay is my Part B deductible, $233 this year, around $266 in 2023. Ask your Clinic's Financial Coordinator.
Right now I can't because the AKF is paying my Cobra Aetna premiums which ends 05/31/2022. Then I will see about Medicare add ons. Thank you for the info. Happy Holidays!
I get what you are saying. After transplant I initially felt great but as time went on, the psychological adjustment to the change in lifestyle, like having to isolate more, dealing with side effects of meds, getting infections, worrying over physical symptoms worsening, etc., created a pattern of anxiety and sleep problems.
Though distracting myself with the busy-ness of the day is one way of coping, I found that at night everything I avoided thinking about would come back. Yeah, no one prepared me for how anxiety and depression provoking post transplant life can be. Here’s what has helped me cope so far:
A supportive therapist. It really helps to have someone I can talk to about how I am struggling when I don’t want to share and worry family members about it. I spent a long time researching who I wanted by reading their profiles and found a good match.
Mediating. This has always helped in the past to keep me grounded. I use guided meditations I find on YouTube (there are tons) to help me stay focused as my mind likes to wander. Also found sleep ‘talk downs’ and soothing music for bedtime.
Going back to creating. I am editing a short story I wrote years ago and forgot about and making craft projects that I give to others. Creating makes me happy.
Staying engaged with people. When I most want to avoid the world I try very hard to do the opposite by calling someone to chat and see how they are. This interrupts my habit of tending to isolate.
Learning something new. I am signing up for a class to two that I can attend. I will keep my distance and wear a mask, of course, and my transplant doc is okay with this.
Resources that inform and inspire. I am working on accepting things as they are not as I wish they would be. Going back to the book, ‘How To Be Sick’ by Toni Bernhard has been helpful. The author, who has a chronic and unpredictable illness shares how she has achieved relative peace with the challenges she faces. This book helped when I was sick pre-transplant. I just ordered another by her called ‘How to Live Well With Chronic Pain and Illness.’
Reading what others say on this forum about their experiences helps me remember I am not alone. (Information here has been useful. Support I see here makes me feel grateful. Thank you to all who contribute your experiences as well as thoughtful responses).
All that said, these are specific things I am pursuing that are helpful to me. Everyone is unique in their search for what will help them cope with their day to day personal reality post transplant. You are not alone in this search, transplantwarrier. Hope this helps.
I am going to give meditating a go! And I will look into those books you have mentioned. My team at the renal clinic have now referred me to a renal social worker as well as sticking with my counsellor. Also I’m being referred to a support group with other transplant patients feeling this way. There’s a lot of support out there and Ive got to a point where I have to reach out and take it
Hi Transplantwarrier! I had my transplant exactly 2 months ago and this is all new to me...I must say that so far medications have affected me deeply: I don´t sleep well at all at night and during day I am hyperactive (is like I need to move all the time and do things). I am more sensible and a bit obsessive about hand washing and if things are contaminated or not so I´m constantly disinfecting everything.... I am really thankful for my new kidney but I am constantly afraid of making "stupid mistakes", small mistakes that could end up in an infection...right now I got influenza and I don't even know how, because I don´t go out except for my daily walk (wearing a mask, keeping distance and all that ) and to assist to my medical appointments...is such a mix of emotions and I do not want to "bother" my family with this, because everyone is so happy for me that it feels like I am spoiling the moment....
On the other hand, my husband who has been the best trying to take care of me and help me, has a depression that he is not willing to work, so I feel I am in charge of that too. but I don´t know how to handle it..
The physical part of the kidney transplant has been the easiest for me, but all the emotional part has been tough and I do not know who I can reach for help or how to solve it....I´ve been doing meditation, reading some books.... I discovered this community a couple of days ago and it has been like opening a window with fresh air...I read posts and I can see that what happens to me has also happened to others and I don´t feel so lonely in this process....
I guess we have to take one day at the time....I made a list of things I want to accomplish before going back to work and I feel more productive by doing those things, like I achieve something everyday besides my medical routine...that has helped a bit...
Funny you mention the brain going round at night and then hyperactivity during the day,which i find im getting alot done at least after years of tiredness.I was super anal the first few months too but after getting covid for the first time at the hospital from a crowded transplant ward, and a superbug from there too well i figured my standards were better then theirs so masking,hand cleaning, also wiping down groceries i was going to use and giving up on my soft egg yolks and definitely no christmas staff parties or buffet foods.
Hi Parkerbarker! that´s a very good way to see things now: if hospital protocols are worse than yours at home, then home is safe! I´ll take that for my obsessive cleaning part of this process.... thanks!
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