Transplant Jitters

[Officespacefan]

My kidney disease manifested due to taking Lithium for Bipolar Disorder. Lithium was the best option soon after I was diagnosed about 35 years ago. After 14 years on it, blood work revealed my kidneys were adversely affected, and I had to get off it immediately. Since that time, I’ve taken numerous different meds and had multiple treatments in an effort to stabilize my mood. Unfortunately, instead of becoming balanced, I’ve experienced severe treatment resistant depression more than not, especially as I’ve aged. (I’m 59.) I’ve been on disability for it for five years and don’t work anymore.

When I found out in March that my GFR had decreased to 19 and that I needed to start the process of preparing for a transplant, I was shocked and scared. Maybe I overreacted? I’m really worried not only about the surgery, but also what’s in store for me post transplant. I’ve read about the med regimen and side effects that I’ll likely encounter. I’m already taking a slew of psychiatric meds which cause side effects, like low energy, tiredness, dizziness, etc. And when I’m in a depressive cycle, which is about 70% of the time, I am paralyzed and become a recluse. I’m unable to leave my home and go out. I usually postpone any doctor appointments and don’t make any social plans. I don’t get out and walk or do any exercise, which I realize is definitely really important for my overall health pre and post transplant.

So, I’m very concerned about the after transplant numerous doctor visits. I wonder how I will get myself to go if I’m depressed. But, I understand how critical these visits are and that I cannot cancel or postpone them.

I’m very fortunate that my husband has been approved as my donor — I realize how amazing the odds were for him to be a match. But, I do feel guilty that I’m not more excited about our journey. The tentative plan is surgery in January 2023 since that is the best time for my husband to take off work for a month while we both begin recovery.

However, even with everything falling into place, I still want to postpone the surgery. Frankly, the idea of it haunts me and weighs me down. I know I just need to buck up and do it. Be strong instead of weak and frightened. I’m just not there yet.

Any advice or comments are welcome. I’m so sorry this post is SO long. Thank you for reading it. I’m very grateful for this community — I’ve read lots of posts and have learned quite a bit…

Thank you!

[Beachgirl32]

I suspect that you are seeing a therapist being on depression medication . I know the thought of transplant is scary that is great that your husband matches and he will be your donor. That a beautiful gift so many have tried for me but I’m a hard match my antibodies are really high. I would suggest you talk to your transplant social worker tell her about your anxiety . Or transplant corninator ask them about the drugs you will be on will any of them have an affect with your depression medication. Ask them for a zoom meeting if you can’t get yourself out.

I would really suggest if you start walking it would help. If you can’t get outside then walk inside . There are great walking video on cold days I do inside I find a walking video of Leslie santone may not have her name right just type in walking video . But even if you could start with 10 minutes outside then increase it each day. Even when we are depressed sometimes we have to push ourselves .Just take baby steps each step is a goal.

[6821green]

I am responding to your post with my own story in hopes it gives you encouragement and helps reduce your fear and anxiety concerning your upcoming transplant. I, too, took Lithium for 20 years for bi-polar disorder. Neither of the two prescribing psychiatrists who treated me ever ran renal function tests. In 2004 after rising BP readings, my OB-GYN put the pieces together and got me immediately into a nephrologist. My husband and were told both of my kidneys were irreversibly damaged, and I would be facing a transplant in my future. He also found me a new psychiatrist, who helped me transition from Lithium to Depakote. The Depakote has worked wonderfully for me. I have not had any major manic or depressive episodes since taking Depakote, and it is the only medication I take for a mood stabilizer. My new psychiatrist checks my Valproic acid levels and runs liver function tests every six months. I remain very steady when it comes to my moods. In October of 2019, my GFR fell to 19, and I began the journey towards transplant, securing a living donor in 2020. Due to Covid and my GFR stabilizing for a while, we were able to postpone surgery until June of 2021. One of my major concerns was having to be on Prednisone following the surgery, due to the side effects that might severely affect my moods....especially the possibility of having another severe manic or depressive episode. Fortunately, the psychiatrist who saw me during my evaluative appointments (@ Mayo Rochester) was a strong advocate for my post-transplant drug regimen including the use of RAPID TAPERING for the Prednisone treatment. I received a massive dose (500 mg) during surgery, the next 2 days I was given 125 mg via IV, followed by 60 mg orally for one day, and ended my Prednisone therapy with a 30 mg dose, just 5 days after surgery. You have the blessing of having your husband as your living donor match, and I encourage you to take whatever steps you need to prepare physically, mentally, and spiritually for transplant. I made every effort to eat very healthy and get as much exercise as I was able to in the 3 months before surgery. You have time on your side, and it is important to realize being able to have a pre-emptive transplant is a luxury that many kidney diseased patients do not have. Focus each day with Gratitude and a sense of Hope and Positive Expectation. I wish you all the best in these next few months. Transplant Journey is a road of many ups and downs, but keep your eyes on the prize. You are going to feel soooo much better with a new kidney, just realize you are just trading in for a different set of health issues. Take each day as it comes, striving always to find ways to ease your anxieties. Reach out to those who have given you support in the past. You can handle this, with the support of your husband and loved ones, practicing the good habits to reduce your depressive episodes, and staying an informed and active patient in ALL aspects of your care. DO NOT be afraid to be your own advocate, and feel comfortable to voice your every concern, expressing your every need freely, and when you need to Question with Boldness

[Officespacefan in reply to 6821green]

I cannot thank you enough for your response to my post! Just hearing from someone with a similar situation is very comforting and encouraging!

I’m so excited about the possibility of taking the prednisone for about five days after transplant. I just asked my transplant team on Friday to send me a list of post transplant medications, and I am going to forward it on to my psychiatrist as soon as I receive it. (Perfect timing too!) Now, I will also ask him about the rapid tapering that you explained and were able to do.

Prednisone is a definite worry for the effects on my mood — I still encounter quite a bit of depression, and I certainly don’t want the illness to get worse! Another big concern about this drug is weight gain. Last year, I gained about 40 pounds. I was taking an antipsychotic med that made me SO hungry, and I started eating all the time. I’ve heard prednisone has similar effects. I’ve worked hard to get 30 pounds off this year and am looking at losing another 20 pounds before the surgery. My GFR actually increased from 18 to 21 at my latest blood draw in June, and my nephrologist said it’s most likely due to my weight loss. So, that really motivated me to keep on going toward my final goal.

My mood is a bit more stable since I started taking CAPLYTA in June. I’m able to keep my depression at bay sometimes and am crossing my fingers that it keeps working in the future. Even when the depression creeps back, the cycle doesn’t last too long, and then I go back to a less severe version of it. I’m now able to get out of the house when needed, though I am still home most of the time . I haven’t started exercising yet, and I know I need to.

I’m SO happy for you that Depakote works for you! That’s fantastic! I tried it and almost every other antidepressant and antipsychotic out there to no avail. I also attempted treatments — TMS, ECT and Spravato (ketamine nose spray). None of them worked for very long, if at all. I can’t imagine going through yet another severe mood swing by taking the prednisone!

So, THANK you again so much for your kind and informative response! I’m a little less scared and more encouraged by your journey.

Best wishes!

[LisaSnow in reply to Officespacefan]

my understanding is that TMS is not approved for BP. What country are you in?

I think with good planning, the transplant journey can be successfully managed, regardless how many other medications you are on. Have faith, and good luck!

[6821green]

Thank you for taking the time to send me such a warm and heartfelt reply. You really have much good news to report! Congratulations on your weight loss and being proactive with your research concerning your new drug regime. Hopefully, your psychiatrist can help you coordinate with your transplant center in helping you advocate for the rapid tapering of the Prednisone.

Just wanted you to know my GFR increased, too, right after my donor was approved, so I was put on the deferred list for 10 months until it dropped again to 19. I did have to go through a shortened version of the initial approval testing, which took 3 months to schedule, but that just gave me more time to lose weight and prepare for surgery. Once the transplant could be scheduled around my donor's timeline, we quickly got in "all systems go" mode, which kept me focused on the goal ahead.

It is also promising you have found a medication to help relieve your depressive symptoms. I have found keeping my diet clean of sugars and carbs helps me with anxiety and lower ends of the mood scale. When I do have a "Black Day", I try to keeping moving and accomplish 3 small tasks daily...even if one of them is just getting out of bed! Remember to give yourself some grace, too. But, I do agree with Beach Girl, sometimes we just have to dig down deep and push ourselves out of the pit. That alone, can keep us moving forward. I have also found when the fear of blackness starts to descend upon me, reaching out to another person who may need blessing is the best medicine. Doing this takes my energies in a new direction. Since Covid imposed all of us to be isolated from one another and immunosuppression poses its challenges as far as being in close physical contact (especially in the first few months immediately following transplant), I have found communicating through writing notes, phone calls with family and close friends, texts and selected contacts on Social media have helped keep my lower moods in check.

I always remember to put good foods in my body, drink plenty of filtered water, take all meds on a timely basis, exercise as much as I can, sleep on a regular schedule, listen to my body and rest when I need to, and live in a state of gratitude and thanksgiving. Thank you for allowing me to "converse" with you. This has been therapeutic for me, as well.

May God continue to bless and keep you.