Mental health issues

[Cazzy41]

Well it’s almost 2 years ago since my transplant. With everything that went wrong afterwards I am really struggling to cope or feel blessed with this amazing gift I was given. I saw a psychologist that works with Renal patients and I got as far as being diagnosed with PTSD and depression and then her services were taken away with no explanation. I’m in the UK and have been seen by the local mental health team once last year!!! I am so mentally broken I don’t know what to do for the best. I am a single mum with two sons. It’s stupid because whilst I was on dialysis I always had a spring in my step and a smile on my face but now I don’t want to face people or life. I have reached out for help and feel like my life doesn’t seem to be important enough for anyone to say “ I got you!!” I have told the renal specialist and the nurses exactly where I am right now and still nothing. Don’t know which way to turn for the best anymore 😔

[Dara3351]

Sorry you are going through this! Do you have family or friends who you can turn to? All you can do is take one day at a time. Do you have hobbies? Can you join a group that gets together for dinner? Make a goal or a couple of small goals for yourself. Step out if your box. Go for a walk. Visit a museum or see a tourist attraction. Go to a department store and get a make over. Try something new! This is another chapter in your life. Enjoy it!

[LisaSnow]

Please, make an appointment with a psychiatrist. Your symptoms may need medication for a short while, to bring you back to a manageable state. I don't know how healthcare system works in UK but I urge you to see a psychiatrist in addition to a therapist. Your symptoms CAN improve and you must reach out to the right professional.

[Cazzy41 in reply to LisaSnow]

Thanks Lisa. This is the problem I have reached out for help and the mental health system is under so much strain in the UK , it’s kind of hit and miss. I had one appointment with a “ counsellor” who had no idea what to say to me. That was back in November last year and I have another follow up appointment on March 11th. But it’s been so long since I saw him it is going to be a case of starting all over again and explaining everything over again. That to me right now is very traumatic to constantly relive it all over again xxx

[LisaSnow in reply to Cazzy41]

I don't know if you were given a diagnosis of PTSD or if it is just your description of how you feel. You need an accurate diagnosis to be treated properly. Medically, anxiety and depression can be managed successfully but ONLY if you are under the care of a competent psychiatrist. Please don't wait.

[Cazzy41 in reply to LisaSnow]

I was given the diagnosis by a Psychologist

[LisaSnow in reply to Cazzy41]

Remember you need a psychiatrist, not a counsellor.

[Falkenhayn in reply to Cazzy41]

I was deliriously happy after getting my transplant 15 years ago, so I may not be the best person to respond to your situation. However, I do know that being on dialysis greatly simplifies your life and confronts you with a massive problem that gives you a handy definition of what your goal should be and what you should look forward to (getting away from dialysis). Once you get a transplant, the full panoply of life's complexities and ambiguities re-opens, and this of course brings challenges with it, which can make the return to normal life difficult. I suspect that is the cause of your current disturbed mood, which should pass once you get a handle on regular life again.

[Cazzy41 in reply to Falkenhayn]

It is nothing to do with coping with life’s problems. After my surgery things went very wrong very fast. Due to poor after care whilst in hospital I ended up in ITU with two litres of water in my lungs. After that my staples were taken out too soon ( by roughly 8 days too early) so my wound fully opened up on me whilst I was at home and all the stuff that followed that. I am a single mum and have been coping with life for many years before dialysis, and during but this is something way out of my control. I am glad your life went back to normal but mine hasn’t. It’s kind off being stuck in a fog with no beacons to help me out .

[Roadrunner1954]

Sorry to hear your story. Was your transplant successful

I had my transplant a year and a half ago

I had depression also but on the mend now

The medication we are in causes mood swings and depression

I go to gym daily. This helps a lot

Insist on speaking to your consultant on this. They can change meds if necessary

Hope you get better 😀

[Hudtuckn44]

Dear Cazzy 41: Thanks for writing about your experience. I too had a kidney transplant almost two years ago, with life threatening pre and post operative medical events. I am in good health now physically but like so many other recipients the emotional part takes longer to settle. As difficult as dialysis is, the dialysis nurses and doctors become family. Once you leave that “family” there is a huge sense of loss. Your caregivers have always had your back. They love you but want to cut you loose from a life of dialysis and see you thrive without them. You transplant gives you infinitely better health. Your frame of reference has been your caregivers who look after physically sick people—professionals in kidney care self-select—it is very challenging to care for dialysis patients— the docs and nurses live through every concern with you in real time and on a full time basis. It’s tough on them but they would prefer you not be a patient. They all want you to graduate from dialysis to transplant but suddenly, you lose the social network of dialysis, receive a transplant with meds that affect mood, and your network moves into the background— it’s unhelpful to be diagnosed with PTSD which applies to anyone enduring ESRD. Your biochemistry changes massively through transplant and so does mood. What you are feeling, a fog, is very common and is treatable with medication. You are not alone. Reach out to psychiatry at your transplant center for evaluation medication and monitoring. It does get better. I promise.

[Cazzy41 in reply to Hudtuckn44]

Thank you so much for your advice it’s is very much appreciated

[Hudtuckn44 in reply to Cazzy41]

Hi Cazzy41. You are most welcome. I’d like to add some additional thoughts that I trust you will find validating and reassuring.

When my transplant nephrologist who I saw very frequently pre transplant told me I would see her once a year post transplant I cried and she told me to “get a life”. It was devastating to me until I realized her motivation was an unselfish act of kindness. “Much as we like you we’d be much happier not to see you because it means you are physically well”.

In the fog that I was feeling I felt abandoned. Comparing how much luckier I am than others didn’t help the fog until I realized that the possibility of transplant over dialysis is miraculous.

Approximately 20 per cent of outpatient psychiatry in hospitals is addressing the needs of organ recipients.

As a single Mom you’ve had incredible courage and resilience to thrive in life with “a spring in your step.” Imagine your possibilities free of dialysis— easy to say, but once you align your inner strength with meds that will help lift the fog, life will get much better.

If you are medicated for depression and it’s not helping then (I) you meds are likely not properly calibrated and need adjusting which takes time and (ii) moving from dialysis to transplant, still requires constant vigilance, because the medical support is not as readily available for kidney patients that are free of dialysis.

You have resilience and inner strength. You’re probably exhausted. And your boys are getting older.

You are dealing with many life transitions — but from a position of strength. While life seemed better two years ago, being free of watching your potassium, phosphates, fluid restrictions, anaemia, your fistula, calcium, parathyroid levels, electrolyte imbalances and I could go on and on, you are much better.

Be as much an advocate for yourself as you’d be for your kids. Tell your post transplant team you are not being heard — that wellness isn’t just getting the plumbing fixed, but being given the tools to embrace what you now have. Insist on being heard. Go visit your old dialysis unit and ask whether you’d give up what you have now, a working kidney, to get back the warmth of that community? Very best wishes and please post about your progress.

[Cazzy41]

Well that advice is more appropriate than other people’s which I’m saying with absolute respect. The part about being as much an advocate for myself as much as I would for my sons really hit home. I would fight for them with my dying breath but for myself that fight isn’t there.

That is something I really have to work on. I have sought help for my mental health and so far I feel absolutely let down. Since the transplant which has just been two years 20th March I have had only 5 mental health appointments and I feel even worse now than before. I’m told the were going to put me into to sleeping tablets as I’m getting about 4 hours a night on a good night, and still I have heard nothing. It’s like people are making me false promises of help that no one follows through on. I’m sorry to be rambling. But I totally agree with what you have said. And I appreciate you taking the time to try help me. I will keep you updated as things progress. ☺️