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[ellen3]

Hi. My son is 42, has a gfr of 18 realistically reported as 15 by his Nephrologist. He has concommittent health conditions: severe learning disability/osteomylacia/Raynauds/fanconi syndrome, etc. He has calcification of his kidneys thought due to prescribed excessive vit d over extended period. He weighs 42 kg. He is on a vegan diet. He has significant needle/invasive treatment phobias (has to be sedated for simple blood test). Dialysis and live transplant are now being discussed BUT given his phobias and health conditions it is being inferred these may not be offered. HELP...

[drmind]

So sorry to read about your son. Im not sure what your options are. You certainly are at a very difficult place and have such a heavy burden. I'm hoping someone on this forum can offer some advice. Hoping and praying that things work out best for both of you and you enjoy some comfort eventually.

[Kbressler NKF Peer Mentor NKF Ambassador]

Tough situation and realistically with CKD progressing towards renal failure is difficult. Options are two fold transplant or dialysis. Phobias about needle sticks is self limiting. I would begin an immediate search for a living donor and if dialysis is in the picture would consider PD. Blessings.

[Lilly234]

I don't know what to tell you except that I have been on dialysis for 3 years. I was turned down to be put on a waiting list for a transplant. If I had a live transplant, I would be able to. There are ways that he can do dialysis at home, He would need to talk to his doctor. He would need surgery to implant the PD in his stomach. He would be under anesthesia. I can't say too much since I am not a doctor but wanted to give you some insight into this.

[Gotthecall_123]

Hi if dialyses is a option you have 2 alternative treatment one is home PD or hemo which would require training and the other is in clinic with a chest catheter where there are no needles involved for treatment you would still have to do blood work but day to day needle free wishing you and your son all the best

[Jayhawker]

As far as the surgery to place a PD catheter goes, can they use medication to calm your son before they do the procedure? Possibly sedate him for the procedure?

Since there are no needles with PD, I’m surprised they aren’t talking with you about PD as a dialysis option. And also, at his age, unless there is some medical (not emotional) reason why he doesn’t qualify for a transplant, I’d expect them to be pursuing a transplant option… BUT, I’m not a physician. These are just my initial thoughts about possible treatment options for your son.

Jayhawker

[ellen3 in reply to Jayhawker]

Yes. This has been discussed, but using the tube may not be possible as his phobias and understanding are so extreme. He has an appointment this week to discuss a transplant but again undergoing this proceedure, taking the meds, being in hospital, and having tests will be traumatic and challenging for him and everyone supporting him. Not to mention how poorly he may feel and then there's the problem of his concommittent health conditions. A very difficult situation that I wondered if anyone had experienced and found a positive way forward?

[Jayhawker in reply to ellen3]

He’ll have to have medical care. The medical community will have options, anti-anxiety meds, etc. So, please reach out to them. Ask them for a team meeting to discuss this…

Jayhawker

[Calebzztop]

Hello ellen3,so sorry that you and your son are going through this. With your sons phobias of needles,PD dialysis would definitely be a better option over hemo but I think transplant would be the best option over all...with pd you may not have the needles for dialysis on a daily basis but there will still be blood draws,Dr appts and possible in patient stays for problems that can arise...Does your son live with you and have a good support system in place? There are personal care attendant programs where someone can come to care for your son so many hours a week and help with meds,dr appts,day to day care,cleaning cooking etc....and does he have a therapist/Dr for his anxiety and phobias? If not I would set that up immediately and possibly they can give him medication along with therapy that can help him with these issues...the transplant involves obviously blood work before the surgery and some testing..and then there will be a few days to a couple weeks usually ,max ,for in patient hospital stay..after there is usually once a week blood work for a couple of months..then if all is well it eventually becomes less frequent..Im at once every 3 months,it was once every 6 months...of course this is as long as the transplant is doing well..and kidney transplants have a very high success rate...then it will be taking his medications daily,which is extremely important. You can't miss doses. But I think in the long run transplant involves less Dr visits, hospital stays, needle sticks , a better quality of life and is less traumatic. I am on my second, it has been almost 18 years and I am being evaluated for a third. My first was as a teenager, and I did do 8+ years of dialysis in between, both PD and then Hemo. ...the transplant team may say his phobias may disqualify him for transplant if they are extreme but with medication for anxiety and therapy and a family support system, possible pca(personal care attendant) he could absolutely get through the blood work needed prior to transplant, the surgery and the few months of frequent blood work until it becomes just every so many months for the one blood stick before his transplant clinic appts...again ,he'll need to take medication everyday.. but with a successful transplant ,..in- patient stays,frequent needle sticks,invasive procedures etc will not be necessary for the most part of the life of the transplant..and I would strongly advocate on his behalf for transplant for those reasons...I know everyone is different and this is my opinion based on my life long journey through CKD ,2 transplants and both PD and hemo,but I believe this would be the best option. I also have needle and invasive procedure phobias after all these years and I'd take transplant over any dialysis anyday. I wish you both comfort and the best and pray that you and your son will get through this difficult time together and get back to living your happiest best life. Sorry if I rambled on or repeated myself!

[ellen3 in reply to Calebzztop]

Thank you got your valuable and balanced opinion Calebzztop. It is very much appreciated. Best wishes for your future health.