Optum kidney community

Feeling helpless


I've thought long and hard about posting on here as I know my partner would be less than impressed if he knew but I don't know where else to turn. Seeing as I'm new I suppose I had better start at the beginning!

My partner has CKD, has around 3% function and is currently on hemodialysis 3 times per week. He's in his late 20s and really struggling to cope, not that he will admit it! When we initially found out about his condition after a trip to A&E. There was a big panic and after a week of to-ing and fro-ing he was referred to the Outpatients clinic. I believed he was attending this but it eventually came to light that he wasn't. By this point he couldn't get out of bed in a morning. I eventually lost my temper (I'm afraid to say) and made him go to the doctors, upon which he was promptly rushed to hospital. The decision was made to start him on PD and all was "well" for a few weeks. Then he lost his job (as a result of being ill) and it was a slippery slope down from there. He got a new job but would frequently miss his dialysis as it made him so ill. Last summer he had a transplant from a close family member, which despite the best efforts of hospital staff lasted a couple of weeks. Getting him to do any form of PD after this was a nightmare, and just as we started to settle back into it he suffered from multiple bouts of peritonitis, ending up back in hospital again. At this point the decision was made to move to Hemo which is where we currently are.

We are still waiting to get back onto the transplant register as Psych want to see him before they sign him off but he wont go. We currently range from being on a high to "I'm going to die anyway so what is the point" on what can be an hourly basis and I don't know what to do. We are due to get married next year and I am desperate for us to have a honeymoon (which I know sounds shallow and selfish and a lot of other horrible words) but he wont find out about dialysis abroad and he wont let me speak to anybody. In fact trying to speak to anybody, or even attend a hospital appointment with him is impossible.

I'm sorry if this is long winded, and a bit whingy, but I truly am at my wits end and don't know where to turn anymore. I know it is his illness and I am in no way trying to detract from the severity of it. I guess I'm just hoping somebody has been where we are now and has survived!