Depression after Transplant
1st time post.
I just joined.
My question is if any of you have depression issues after transplant?
Or if you already had depression, did it worsen after transplant?
I have been on Zoloft since my kidneys started failing. Even many years after my transplant, I’m still on it.
My doctors sort of make me feel that I'm so abnormal for needing the meds.Thanks for your reply Rich.
Yea - they don't want to deal with it, as long as kidney is functioning!
You said it perfectly!
Yes my name is Randy
My name is Randy Henning I had a kidney transplant 6 years ago doing well have gone through some rough roads I had thrush and then I became allergic to my immune suppressant drug now I'm on a new drug called belatacept I receive it once a month through an IV I also have burning mouth syndrome I'm 62 year old male
I have had depression throughout my dialysis and my receiving my transplant you just don't know which road you're going to go down next and I think it keeps you there
I had sleep problems in the years before transplant which got much worse afterward. Nephrologist treated them somewhat but not completely. I later mentioned these problems to familr dr- she told me that I had classic depression symptoms and sent me to psychiatric evaluation. Well he also said that I was depressed - I responded that I only seemed depressed beause I cannot sleep. He said that depression was the reason that I couldn't sleep - and we went back and forth. That started a drug "experiment " trial and error you could say. Anyway I now take Temezapam and Trazadone (mostly sleep) and Mirtazipine (depression). I still don't think I was depressed but this works pretty well so maybe. Sorry to be wordy, but please share how you are doing.
I've taken trazadone for yrs. More for the sleepiness side effect. Would wake up a lot during nite. Trazadone makes me sleep whole nite through.
About 4 months ago I started taking a new depression medicine() & it's working better than previous ones.
Are u able to still work fulltime?
I worked 1 & 1/2 yrs after Transplant, but stopped April of this yr. I couldn't focus nor concentrate & was agitated. I feel it was caused by being on my transplant medicine regiment for a while.
My production & quality of my job droppec. We have high standards to meet. I was very good at my job, but when that started to drop, depression got worse.
Family doctor is in full support of me & my depression issues, but transplant team makes me feel like no one has ever gotten depression after surgery.
I apply for SSA Disability & of course they denied it. It takes 12 to 18 months to get an appeal hearing.
I'm not a slacker or abuser of the system. I just want some help. I've been trying for months to find a therapist close to my home, but none are taking new patients. What am I supposed to do.
I had very similar experience. My timing was different since I was considering retiring and decision was basically made for me. But in first couple years post transplant, I was a monster, like you say couldn't concentrate. When I went to family dr - I felt like I just need to find peace and sleep. I had no hesitation when psychiatric was suggested. This was not counseling but a md who knew about medicines and their interactions- he was a man of few words. He first said that it is quite common for post transplant people to have depression (had never heard that). And that he was confident we could find the solution but it may take some time. Well it did take 2-4 months, going back every couple of weeks - talking about how things were going and changing and adjusting meds. It has finally worked out a lot better- not perfect, but close. Next month I go back for first time in 6 months, will probably tweek meds some. But Try to get another dr to work with and like I was told- your body has been thru a major ordeal and adjusting is not easy - chemically and emotionally. You can get your life back, be persistent and patient.
When you used the word Monster, that really hit me. The mood swings while on the super high doses of Prednisone drove me crazy. I even had a few anxuety attacks while on the high doses too. It's much better now that I'm on the forever dose of 5mg a day.
Yours & everyone's experiences really help & give me hope. I thought I was the only one.
Only people who have gone through the same thing understand.
Thx so much!
Hi! Kathy here... im picking up everything y'all are laying down. My depression was so bad I just wanted to die so I stopped all my Meds until my family figured it out and flipped. I had to do globulin infusion treatment every other Saturday for 3 months to to kill the minute amount of rejection antibodies that developed. I went to Dr. And got the same bs for 3 years. The transplant team, as you said earlier, made me also feel like I was abnormal. I could not leave my room where I had 5 fans on me bc I was sweating profusely no matter what I did. It was disgusting!! My long thick hair fell out in chunks and I gained 70 lbs. in what seemed over night. I was told I had to take the 5mg. Of prednisone for the rest of my life too... after 6 months, I trashed them. I told them never again will they ever give me any kind of steroid! That was 4 years ago, I have perfect kidney function. It changed everything about me, my looks and my mind and they really don't care as long as the kidneys are working. I'm so tired of people saying, "but you're alive" yes, but my quality of like is crap, I have no life. Work, that's it, thank God I have that! I have always been very outgoing, but I became completely isolated and did not want to talk to anyone. I have no desires of any kind anymore and I know this cannot be normal! I was on the depression meds but I stopped them. They didn't do anything and I've taken several. I'm so sorry, I could write a book from the last 4 years...I hope all of you find a way to get through all this, I know it's hard!!
Hi Kathy, I am so sorry you have had so many problems. Hopefully they have gotten your meds adjusted to a more livable plan. I hope you can find some things to bring some joy to your life. I donated a kidney to my husband and he has suffered depression as well. I would get frustrated with him but had to step back and realize, the transplant is not a plug and play thing, it is a treatment that is demanding to manage. It doesn't fix the diabetes or other conditions that caused the problem in the first place. Everyone has their own pain that others may not understand. I wish you peace and thank you for sharing.
You know, it's been really hard mentally and emotionally, other than that, function is perfect. At age 13, while in for a partial hysterectomy, They discovered I was born with one kidney which was undeveloped. Up through my 20's and 30's never had any problems. Around 38ish I was having stomach issues and thru a procedure learned that I was at 50% with the one kidney. Still fine though. Of course I was told by deserve, in my 20's that I'd be on dialysis by age 30 if I didn't change my life, well, I wasn't even trying to hear them! At age 43 I was at 12% function, still fine. My nephro said I needed to start dialysis. Well, me just Being me, I refused until I was at 4-5% function only bc they said I could just die in my sleep. I was still never sick, I worked full time and lived a fun life. I did paratineal at home at night so I could still work full time. The Drs were baffled that I could get out of bed in the morning, much less work 50 hrs a week. I was on dialysis for 9 months and go the call. The call came on my mothers little brother birthday, who was killed in an accident in 1972. His mother we behind his fathers back and donated his organs (things were different in Europe back then) so I was a gift I was reaping what my beautiful grandmother had sewn. The following day I received 2 kidneys from a baby😢 (I was 47) This was and always will be very hard for me. The fact that I have lived with eating disorders and body dismorphia for years, the next 3 plus year would be pure hell. My long thick hair started falling out in chunks and I gained 85lbs in what seemed over night. This alone made me spiral down! I know ppl don't understand, and they didn't, but it's ok, it was and is my struggle. I have lost 50 but still working on it. I think My body is finally trying to somewhat go back, of course I'll be 50 4 months so, I don't expect to be the same, but I won't stop trying. My family has been my everything and what you did for your husband is beautiful! I will have to do my story in pcs. Lol 😂 it's too long lol! Thank you for chatting with me😊 I'm sorry it's so long...
Thank you for sharing, quite a journey. Transplant requires a lot of discipline. That combined with all the meds cans be challenging. I gained a lot of weight after the donation. I would like to blame it on the surgery but have to own the fact that I quit working out and are too much (cookies) lol. So I signed up for a Diabetes Prevention Program with a health coach, started working out. 25 down 25 to go but I do feel better. We have to take of ourselves, no one else can do our work! Stay strong. Come chat anytime. Lots of nice people to help. You got this!
I know I need to work on the self discipline part too.
Thx for your feedback.
First of all, you have depression, it’s not your fault, it happens to soooo many people after transplant.
Secondly, go with your family doctor’s advice, start on something! You don’t have to live so depressed, there are many different medications that can really help. When you mentally feel better then you will physically feel better! Keep your chin up and stand up for you, only you know how you are feeling emotionally.
Psychologist is and excellent addition as well, just talking to someone helps so much! btw...The transplant clinic I go to has a psychologist on staff and sees a lot of patients w after transplant issues. I’m going to make an appt w him, this is a hard road to walk and can be soo overwhelming!!
My best and prayers to you.
I live in Michigan Great therapists in Farmington Hills , if you tell me where you live they may be able to recommend a good for you
I have been taking clonazepam 4 years now and also amitriptyline it helps a lot
I've had major surgery twice including transplant. I had it both times,but it went away after a while. Doctors tell me it is normal & meds could also contribute
Meds definitely contribute and are the major cause. I found an article on internet "What they don't tell you before your transplant " that describes ths situation.
I didn't have depressions issues after my transplant nor while on dialysis.
Check side effects of meds especially steroids
I was never diagnosed, because I never told my doctors, but I did go through depression. I also developed anxiety.
Thx for reply.
Knowing others have gone through same thing helps.
Talk to your family doctor. He has been great helping me manage it. And he's not just a pill pusher. He always asks precise questions on my thoughts, side effects, etc...
I don't believe formal depression, but there was definitely a transition period where I was (down?) So many other things occurred on top of the surgery that it felt like the hits to my entire life may not stop coming (job loss, loss of friends and family who just faded away).
So, I kept myself as busy as I could, began walking as soon as I was allowed, found work again, kept my mind occupied with productive things, slowly transitioned to more engaged exercise - nothing too crazy - and have had to get used to this "new normal" of my life post transplant, with the multitude of things that come along with it and all the medications and side effects. Hope you find what is right for you.
I haven't transplanted yet. Hopefully in June. I have depression now. I need to visit with my team & see what they recommend.
Wish I was more helpful.
Wow. This is very interesting to hear. I experienced a 65 lb weight gain post transpant. I experienced the days of literally not going to sleep and a huge onset of aggression and depression post transplant.
I believed it was “just me” but after researching the medications more I realized I was legitmately experiencing depression, having the food cravings and unable to relax my mind and go to sleep.
In regards to my depression, my doctor didn’t believe that it was the meds because I was on a low dosage of Predinsone (5mg). I rebuttal this because I feel that though “statically” medications have this reactions or that, it is a disservice to trivalize my reaction because it doesn’t fit within those parameters.
During the pre-transplant screening, every patient receives a mental/physical work up. Understandably, this measures your health, both physically and mentally in prepreation of the post-transplant regime. It is well known that these meds can have an adverse reaction causing everything from depression, suicidal thoughts, cravings, overeating and sleep deprivation to name a few.
I was offered anti depressants to combat the depression, which of course, offers the possibilty of more weight gain via inceased appetite. Well, I had already gained approximately 65lbs post transplant, so adding the additional meds/health problems were not an option for me.
So what do you do? I started learning to be conscious of my thoughts/feelings. When I would become very down, felt hopeless or “doomed”, I would talk myself down, literally!! And I have been actively doing that for the last 9 months. It helps!! This was never suggested to me by medical professions but as a Human Services major, I’ve studied human behavior and coping tools; some level of self talk can go a long way, TRUST ME!!!
Weight gain, sleep deprivation and mental health are real post transplant issues and varying means of assistance should be readily available to patients navigating these post transplant issues outside of another pill.
Kudos to the NKF for offering this supportive, safe place for us to discuss these issues; for creating a platform where renal patients can build comrodary, discuss issues and get feed back!
Lastly, I would highly suggest that you ALWAYS be pro-active in YOUR own care. Find ways to stay positively engaged in your life. Get involved with renal care OR some other organization that helps others; this can lift your spirits quite a bit! Take up a hobby; something that YOU truly want to learn or do! Pursue a small entrepreneur venture. Exercise!!! Walk, stroll, swim, yoga, bike a few times a week. Even a little goes a long way for both mental AND physical health! Find a positive focus!
I pray that each of you find a resoluion that proactively resolves your battles. I often tell pre-tranplant patients that post-transplant is not the end all in this renal journey. Your renal care is continuous, just in a different way.
I am a clinical social worker and a transplant recipient. I asked my doc for depression meds 6 months prior to my transplant. Once I had my transplant I went off them. Everybody deals with things differently. I recommend seeking out counseling and a psychiatrist to treat your depression and not just ask for meds from your nephrologist. But make sure the psychiatrist consults with your transplant team to make sure your meds are kidney safe.
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