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?
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.
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 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!
Hello Lovemydonor. Thanks for being honest with the statement of how you feel and also the transplant team seems only interested in the kidney's function and little else. I am the careprovider/wife for over 40 yrs of my husband who got his transplant 6 mos ago. The first 2 mos he was doing pretty well, high energy he told his friends, and in early February problems came up with native PKD kidneys (cyst burst), then rejection of new kidney (resolved with IV steroids) and newest issues low hemoglobin,low white blood count. The new kidney is now working well. Emotionally my spouse has withdrawn from me often, his energy has been very very low to do any thing or get interested in something since early February. I see a counselor to help me with the frustration I feel not able to do more, and spouse refuses. HE has always had mood swings. What suggestions would you give me? Is all this normal from medications the first 6 mos mostly? I feel like the wind has been removed from his sails. He has always been active, not now. He's a couch potato for 4 mos. This is worse than when he had chemo 9 mos at age 29. HE is now 59. I appreciate your honest feedback.
Hi Gardner from NY,
I'm 57 & had kidney transplant 8/1/15. The high does if prednisone right after transplant is what gives you all of the energy. As they lower the dose week by week our body changes & we feel different. Some go through it easier than others.
The handfuls of meds that we take as transplant patients are great for the new organ, but the side effects can cause havoc in our bodies.
I had an anxiety episode 2 weeks after transplant.
My boyfriend was taking a nap on the sofa & I didn't want to wake him because I knew he was tired. He was taking such wonderful care of me & the house (laundry, food, yard, etc...).
Out of the blue my neighbor popped over while I was slowly walking outside to the front patio to sit on the swing. I gave her a huge hug & started to cry. All I could say to her was that that I just needed someone to talk to. I felt lost & all alone.
I've dealt with depression before my transplant. But the moodswings got worse after transplant.
The prednisone is the main culprit. But we must take it.
The most recent depression medicine that was added to my med regiment is Divalproex. It works along with my other depression meds to make them work better. It is a med for bipolar disorder.
He never told me I was bipolar but I do have moodswings.
Maybe your husband's moodswings might be a sign that he's had depression & unaware of it.
My PCP told me that Divalproex is a very old med & that is also good for your heart.
Some people can come off of depression meds. I've tried with the help of my PCP but it always comes back.
About a year ago my PCP office added a questionnaire that the nurse asks you when you are 1st taken back to a treating room.
I knew I had depression, but never really knew when it start. Well when the nurse asked if I was ever told that I was "just too sensitive" I responded immediately with "My entire life".
So I guess I've dealt with it & was not aware of it until I was in my late 30's. I had also dealt with anxiety & didn't know what I was feeling nor going through. I just hated the way I felt while having an anxiety episode.
As far as how your husband feels, everyone is different. If he hasn't told his PCP how he's been feeling (mood swings, anxiety, etc...) please tell the Dr yourself.
Maybe they can ask him the same depression questionnaire that was given to me. It really opened my eyes.
If he doesn't want to talk about it, he can do it anonymously on this very site.
This site has helped me understand that I'm not the only who has these feelings.
Nobody is perfect.
Best of luck.
He's lucky to have a very loving wife.
I'm glad that you are seeing a counselor. Your health comes 1st so that you can be strong for him.
Thanks for your honesty Stephanie904. I have been married over 40 years and the mood swings have always been there. Then 30 yrs ago we found out he had genetic PKD. All his kidney doctors and general dr knows about the mood issues b/c I have told them. My spouse refuses to do anything about it and our marriage at times has been very difficult for me, so I started to see a counselor years ago. Now being on so many meds, he still refuses to try and see someone to talk about his moods and silences with me over trivial issues. it's just us 2 , family is far away and we did not have children. I love him so much, but it's very hard to cope for me at times when he will never admit he has an issue to seek help for. YOu have to first see that you need help before you will seek it. I appreciate your support. I truly do. It frustrates me and deeply saddens me to see him laying on the couch month after month due to the setbacks he's had or having now with the transplant and medication side effects. the donated kidney for the past 2 months has been functioning alright,though not doing great with hormone release to make more hemoglobin. I give him a shot 3X a week for that to improve and it is. I have not read anything on this support system about super low energy to just lay around. No stamina ,no endurance. He's an active person before his setbacks in FEb/March. I feel bad for him. I am doing everything and work full time and he's retired. I am glad I am physically able to do everything since he can't know. I am just concerned about him. Thanks for listening to me.
I too thought I would gain a lot of my stamina back. But, during surgery they had to move me all around to get all of the vessels, etc.. connected. This was due to me being an over weight person.
I already had a bad back (compressed discs) & it made it worse.
Eventhough I was over weight, I was still a very active person. Bike riding, landscaping, gardening, camping, kayaking, etc...
The one thing I can still do is a little kayaking because I still have very strong arms. Plus my boyfriend is great at helping me getting in & out of the kayak. The peace that I get being on the water is absolutely inspiring to me.
I still try to do some gardening, but that is usually short lived due to the terrible pain in my lower back. I get upset that I can't do that as much. My college degree is in Horticulture so I love my plants.
Maybe you should stop doing everything for him. When I 1st started having kidney issues 19yrs ago, I lived by myself. I don't have children either. I didn't have anyone to give me my injection of a med that I was on back then.
Ask him to start learning how to give himself the injection. I sweated bullets for weeks until it didn't bother me giving myself an injection.
Ask him to start getting dinner ready for when you get home. I'm sure you're getting exhausted with all that you do.
Just be honest with him & tell him you need some help.
See if any family members will come visit. Possibly a brother, sister or parent? Maybe that will cheer him up. Maybe they can get him out of the house.
Maybe you have a neice or nephew who would love to come visit for a few weeks or the whole summer. That's if they are of scholl or college age. Even if they are older they could still come for a few days or a week.
Do you guys have close friends that you used to do things with?
I'm concerned about him. I think he needs more interaction with other people.
That will give you a break. I'm sure just sitting & reading, knitting, a cup of tea or meeting friends for lunch or dinner will do you some good.
I still tend to stay home all day. I have recently realized that I need to get out more. I'm working on it. But it's a long tough road.
With the warmer weather I always feel better. I'm the sunshine lover in my family. Although now I have to be very careful & put my sunscreen on & put a hat on now that I've had my transplant.
I wish you the best of luck. I do relate with what your husband is going through.
There are days where I just think what else can happen to me healthwise.
It was a rough early spring for me. Some new health issues. It took multiple doctors way too long to figure out what was going on with me. But that's just about done with.
I enjoy chatting so if you want to continue please feel free to continue.
Take care 😊
HI Stephanie904, I truly appreciate all you wrote. My spouse who had the transplant he always does the cooking and all kinds of ethnic foods. About 12 days ago out of the blue, his appetite just about disappeared and he had no stomach or GI issues. Just the past 2 days this appetite came back. His transplant was Nov 28 last year and first 2 mos he was feeling more energy than he had in 5 yrs (his GFR was 13 at transplant). After transplant 34. Then early FEb this year one of his native kidneys full of cysts, a cyst burst and for 2 wks blood /blood clotting in urine and pain in the back (first time 'ever' episode in life). After 2 wks things seemed to be improving, then his labs with creatinine climbing showed after a needle biopsy of donated kidney he was in early stages rejection, so over 5 days in hospital on high IV steroids which reversed this issue , then he came home taking high doses of prednisone for 2 wks and then tapered off. While in hosp found out he had a UTI (he never felt it), so two rounds of antibiotics and food was bitter after that. And while in hosp found out hemoglobin was 6.7, so he was given a shot to improve that number and since March I have been giving him that shot 3X a week due to him shaking so horribly. He shook before transplant due to genetic reasons, not horribly but now horrible. He takes insulin 4-5 times a day and no issues with that injection due to how needle and med is handled and inserted in the arm location. HE handles all his many meds alone. Then we found out in May his white blood count was super low (1800, and just 4 wks later 2100). Low end of normal is 4500. Most of our family is 17 hrs away in another state and many are dead now. YOunger people are raising families and working full time. We have always been very independent and did for ourselves due to our frequent military moves. WE both are vets. HE is now retired and I work full time. My concern is that these setbacks one after the other has taken "the wind out of his sail." HIs local nephrologist said he has nothing to do 'more' with since hemoglobin is lower than it should be and this increase takes time. My spouse went through chemo 9 mos when he was 30 and to me, this is harder than that experience. I really do not mind doing the things I do. I am pretty much high energy, always have been. What bothers me is the wait time before he can have energy to do things he always has loved to do like garden some, fly fish, take a short walk. He was using my treadmill 2 mos after transplant and since the cyst burst the energy has not returned yet. I suggest lets go for a 10 min walk now that it is warming up, and he says no. HE shakes badly and I think it makes him feel like he would fall. Not sure. So I just keep doing what I can. I appreciate your words though and wish you the best in kayaking. that is indeed fun.
Keep encouraging him & hopefully he'll be bouncing back soon.
When you've lost the wind in your sails, you feel worthless & feel like doing nothing.
I've been through it several times. Sleep is all that I've wanted while going through it.
Maybe sometime while he's out with you in the car just keep driving to see some beautiful scenery. Nature is my fix it. Try with whatever he used to love to do. Of course pick a low energy task.
Maybe just a ride to see the beautiful outdoors.
I know that it takes months to heal after a major surgery like he & I've had. Plus then his setbacks add onto that too. I'm glad that his white bloodcell count is slowly rising.
A UTI can be tricky. No burning or sensations while going, but increased frequency is what I've noticed too. I've had a UTI 3 times since my transplant on 8/1/15. It usually takes at least 2 rounds of antibiotics to get rid of mine.
You are both in my thoughts & prayers 😊.
Also, thanks to both of you for your military service for our country.
You are both an inspiration to me & I greatly appreciate what you both have done. ❤
HI stephanie904, thanks for your kind words. Where we live is nature all around in the country in the mountains. Just walking in our backyard is wonderful to see on a river. He has yet to do that. I just keep trying. If I could feel how he feels and thinks for a few days, I would welcome that so that I understand things. He is more of an introvert compared to me. It just breaks my heart seeing him laying on the couch more hours of a day instead of doing something, anything would be good.I feel trapped at times to help him.I try not to push too hard or he gets defensive. Thanks for your prayers and kind thoughts and support. I will also give you the same.
If you think he would like to talk to someone that's been in his same shoes, he can private message me.
You don't want to feel or witness what we feel when we're so down.
It's not fun & sometimes tough to crawl out of.
When you need all of the help in the world, you really find out who your true "friends" are. It's sad, but my boyfriend, family & two of many girlfriend are the only ones that check in on me.
Does your husband have a one true military buddy that he always referred to while in active duty?
If there is, get a hold of them.
If you think it would help, tell him you've met someone online that's been & has felt the way he feels & that they are willing to chat/private message him.
He may say no, but we can try.
Hi stephanie904, I will take your very open/kind gesture to private message with him to heart. HE has 2-3 guy friends he is close to (not military though) that he communicates with at times. I have a few close girlfriends who check on me/us, but you are correct, it can become 'crickets' (hear nothing) from family/friends after months go by as the person with the transplant is going through recovery/challenges to resolve. I agree you learn how truly cares. I just think "life" gets in the way and others have their own challenges to move onward with. when I asked our transplant center if they had a support group (they don't), my husband 'balked' at this question. I told him, I was asking for "me". He does not see the need for such things in life. I know that already due to other issues. I will keep in touch with you if the right time comes up. thanks a lot. It means a lot.
You are very welcome.
HI stephanie904, we went to transplant center yesterday and other appointments and overall my husband is doing okay. The nephrologist said it could take a year for the kidney to do 'all' is should do and it's not a guarantee. He was referring to the hormone release to tell bone marrow to produce more hemoglobin. This dr. and my husband talked about the low energy going on over 4 mos now and what my husband plans to do to help himself. Personally doing 5 min a day on my treadmill at a turtle pace would be a huge positive thing compared to how things have been. His shaking so badly makes him concerned about falling, so he prefers to do this when I am home. I work a day shift full time, so we'll have to figure out something. I know he wants to get better. For me it's just hard to watch how declining things have become though I am super supportive. Overall the appt was good yesterday and we go in 4 wks again (not 2 wks, which is good). I need to find out how to do the private message to you on this system. I would like to do that, if that is okay with you. thanks for your support. I truly hope your journey in health works great for you.
So glad appt went well yesterday. Happy he was asking questions of the Dr.
Super happy he wants to do tread mill too.
Not sure uou can private message thru this site. I normally message thru facebook.
My last name is Stephenson. Look me up on face book.
I have full roundface with reddish face & glasses. My bald headed boyfriend is in pic with me.
Just send me a friend request & then I'll delete this post so that I don't have anybody & everybody wanting to be facebook friends.
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'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
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.
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.
I've had a heart transplant and didn't have any depression went back to normal life fairly quickly. I would suggest reaching out to someone and telling your gp, they might be able to forward you on to someone that can help. It's nothing to be ashamed of though. X