Hi, this is my first post so I hope this is the right place to ask something like this.
I had a transplant almost 5 months ago and thought I would be super happy by now, especially after a year on dialysis. Instead I've been feeling quite sad and kind of like I'm in a rut. I'm a young college student and have always been athletic, so physically I've been recovering well but mentally and emotionally it's been so tough. I've tried getting professional help from therapists but that honestly hasn't worked. I just want to feel happy again, at least every once in awhile.
Any suggestions or advice for what I could do or what has helped other people that have gone through this would be very appreciated! Thank you so much in advance!
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steelersfan23
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First of all, congratulations on your transplant! We who have had them are really blessed. Reaching out on forums such as this was your first move in the right direction because you'll soon realize you are not alone. Between the process itself, the physical recovery, the thought of adhering to a regiment of medications, followup labs and doctor appointments, it's a very common response. I'm six years out and still sigh every time I fill my pill box!! You are young. You are strong. And you will get back your athleticism if you are patient. Every time I get into my "why me" mode, I remind myself that this is my "new normal." And it sure beats the alternative. We're all here for you to vent, scream and ask questions! You got this!!
I agree with Chattycat it takes time and this site has help me a lot you will be talking to people in same boat and they can offer bery good advice 🙏 ill be 1 year post transplant on may 24th 😁 im still recouvering still a few med adjustments but im taking care of my health and especially my new buddy my hew kidney diet and moderate excersice play major roles in your recovery mand drink lots of water good luck🙏Stay strong 💪amd enjoy,your new found health 😝 my name is Dave😝
You said you had tried therapy! Was your therapist from your Renal team or just a general therapist? I only ask this as I am 14 months in from transplant and due to issues beyond my control after surgery I now have PTSD and depression. I am working with the Renal psychologist to try get through this stage and it is helping unfortunately there is not a quick fix solution it is going to take time. I was in dialysis for four years and I miss the staff not the treatment. We were like a small family and that’s hard as well. All I can suggest is speak to your team about how you are felling never hide anything. Good luck hunny you will get there it is just going to take time x
Well explain to her your feeling no benefit from your sessions and maybe adding a low dose antidepressant may be the way forward. I’m sure if you be open and honest she in turn can try different techniques.x
What is your prednisone dose? I am pre-transplant (hopefully this July), but had to take high-dose prednisone for 5 months as a teen. It was AWFUL. I experienced depression and anxiety. It would start to get better, but every time I tappered the dose it would get really bad. Eventually went on an anti-depressant to help me cope.
So glad to hear that you are being proactive and talking to your therapist. Sometimes a low-dose of medication allows you to benefit more from therapy as you can process things easier. Your team will evaluate your specific case. Best of luck, and don't lose hope. It does get better!
Hi steelers fan! I can identify with 100% of what your feeling. After my transplant, your expected to recover instantly and skip out of bed every morning, sing with the birds in the forest like Cinderella. Well reality is the exact opposite. I had a really hard time adjusting. Even though I was grateful to be alive, I felt stuck in a rut. Paralyzed. Low energy. I did want to live any more. I think at least half of that was depression from meds, but also environmental circumstances such as my parents divorcing, My sisters husband cheated on her and I had to take care of 2 very young kids while they fought it out in court. I had to move in with my mom who was divorcing my dad after 40 years. My dad cheated on my mom and lied to both of us for 1 year. With a church lady of whom my family employed. I moved 6 hours away with my mom to San Diego and she had so much stuff, It filled the house with crap. For years. So it was a very stressful environment plus her constant need for attention. I became her husband. I lost all my friends and support from my friends. I had to start brand new in a new city. I also had the pressure of working right away to pay off student loans. But 4 years of dialysis prevented me from maintaining my career. No one hired me. I never want to go through that again. After 2 years I lost my kidney. Which put me back on to dialysis. I wanted to stop living, I fully blamed myself. Going back on dialysis after all that hope and everyone supporting you, being hopeful for you, really made me even more depressed. I ate Reeses pieces in bed for months. I gained 30 lbs. I tried to isolate from my mothers demands. It was total anxiety hell. I was paralyzed. And I took 200mg of Zoloft which I still take now. It did help a little bit and Im so glad for it. I was so frustrated and depressed I did feel well after transplant. I didn't want to disappoint anyone. I really just heatedly life and I felt like I was in a big black deep hole that I couldn't get out of.
What started to change things was dialysis helped me lose weight. I started to do some boat maintenance under the table. So washing small boats got me in the sun exercising. I was still depressed but I made myself sign up for sailing lessons and I gradually grew from there. I practiced 2x a week, I met people. I made friends, started to race locally. And I told people im on dialysis. And they accepted me. It was nice. They definitely didn't understand what im going through but they were nice and compassionate. Exercise and being outdoors was super hard to get motivated. But once I get going, It helps my mental status. I suggest starting there and getting on antidepressants. You might need to try a few different ones. But your GP can prescribe them. It helps to not feel so deeply. More flatline. Which I'll take flatline any day! Compared to the pain I was going through. I also found a therapist after I got rejected by a guy I liked. It took at least 6 weeks to actually get anywhere and trust her. But I only continued for a year as I felt I was doing all the talking and all the work. I might as well talk to myself in the mirror. And she was a chronic disease organ transplant therapist. I know not all therapist are duds. But With my medicare/ Medi-cal, it was hard to find a a good therapist since the reimbursement rate is 38$ an hour and very limited. But thats just me. Try it. If you don't like it, then stop. But you must try. For me, Medications work. Thats what genuinely helped. Plus exercise. Talking about your experience. And please be good to yourself! You have been through a major major operation! Listen to only how YOU feel. Nobody knows what your going through but you. And always put yourself first. If you want to lay in bed all day, then by all means you should do so! And never ever feel badly about it!
Hi, I too am a steelers fan. I had my transplant at UPMC after 2&1/2 yrs on dialysis. I sat in a chair , trying to drink 5 bottles of water a day for a good 6 weeks, I was transplanted 7 yrs ago. I think I had surviver guilt & the meds affected me drastically . Im a very happy person, but I was in a dark place for a few months too. The prednesone causes weight gain & makes me crave sugar& carbs. Even though I have a 6.2 A1C, I've put on 30 lbs. The meds definitly affect my brain function. Did transplant tell you that you have 80% chance of getting skin cancer? Stay out of the sun as much as you can. Your transplant was a gift from god , to be thankful for. Things will get better. I wish you the best of luck. I still run a trucking co. at age 68 & am thankful every day for my gift. They probably will reduce your meds after awhile & I hope that helps. Keep your head high, think of the best times,& keep pushing forward
I was a lot sad too! I believe the social worker s said that was normal! Keep on this site to see how everyone answers. I wish I found it sooner. I really enjoy it.. especially to know your not alone. I’ll keep ya in prayer!!! God bless!!
I'm 12months on the 28th of dec this yr still have down days but on the whole I feel great now .meds are all sorted I have had a few bumps in the road this last 12months. I have felt down on a few occasions you will have these days but they won't last . Just take these days has part of your recovery good luck 😊
Congratulations and welcome! I think we all go through these times of feeling blah, etc. I know I had moments of just being a couch potato but when I planned an outing whether it was grocery shopping, taking my car in for an oil change, going out to dinner with friends I felt much better. I think we become so protected that we are afraid to live our new lives. What sparked me was redecorating my condo. It’s refreshing. I am now in an organizing mood from closets, drawers, and finding items to donate. In other words staying busy. Find your interests outside of your comfort zone. Remember you had major surgery and it takes time for your body to adjust, heal and your attention to your body is most important! Hope that helps!
Hi Steelersfan - I am 42, almost a year and half post transplant and am just now slowly coming out of a long funk. I too thought "If surgery just goes well" "if the meds just work" if if then i would be completely happy and never complain again. I didn't anticipate the grieving that comes with the life change, with facing that in some way my body (kidneys)failed me, struggled to be worthy of the gift of life, struggled with guilt whenever i felt down or didn't do the perfect thing because after all, my life has been saved so i have to make sure i am worth it...it is a lot. and while they probably warned me about it leading up to the surgery, I was so overwhelmed with other things I didn't process it. I saw a therapist and did go on an antidepressant short term - I hated to add another pill but it really really helped me. I still struggle because in many ways I think our identities change when all of the sudden someone else's organ is keeping us alive. HOWEVER, all that said, i also think this struggle, working through these challenges, will make us all stronger and give us a unique understanding of others and the world. It is hard having a profound life event occur to you then you are dropped back in your old life where no one around you has experienced the same. Hang in there, be kind to yourself and assume this is part of the healing. You are also brave because it took me longer than 5 mos to admit how I felt aloud. Keep going and if you are ever in Pgh rooting on the Steelers look me up.
Hey steelerfan..... hang in there. I had testicular cancer at 29 and with the diagnosis, surgeries, chemo, I truly know what you're going through. Now I'm a candidate for transplant, kidney issue kicked off decades ago by the cisplatinum ( chemo ). You WILL get through this and it will get better. If you told me that I would ever not have the dread thought of CANCER banging around my head every second like a fire alarm, I would have signed your commitment papers on the spot. After a couple of years, cancer free, I rarely even thought of it. Dare to hope and believe! Tom
6 months on & I do have very back days, although generally heaps better in myself, steroids are a blighter. ,. Please explain to your renal team exactly how you feel, . this Pandemic doesn't help anyone certainly not us at High Risk. Best wishes.
Congratulations on your kidney transplant. I was in college when i had my first transplant and i know how you can be in a rut with so much going on and trying to keep up with the college life while physically not feeling the same and you may experience physical changes as well. It takes time to get back to the "new normal" i guess you can say. Hang in there! If you have any questions or concerns let me know.
Congrats on the NEW kidney. I think you are sad because you are a Steelers Fan that would make anyone sad jk. I just got a kidney today and I have felt the way you did before the transplant. I was a boxer and athlete. I put on weight and couldn’t do anything and the feeling of death was always with me. I don’t know what the future holds but I’m gonna try to fake happiness till I am happy again and maybe you can fake it till you make it to. If you are a Football fan and play Madden 23 we could play Eagles vs Steelers. And have some talks via PS. My handle is Junii13. Till then smile till its real, that’s what I do, and remember you are beautiful and deserve a happy life!
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