in the dark, anxious and exhausted.

[Escabeche]

I’m my husband’s carer. He’s 74 and entering stage 5. We don’t have a friendly, communicative consultant. What is best for carrying out dialysis? I read about bad issues with a fistula. What questions should we ask the consultant please?

[PeaB4YouGo]

If your considering Hemodialysis, don't let a fistula scare you off. Remember that, for every negative you read, there are likely 4 or 5 good stories that you're not hearing about. I had my fistula for a year before I needed it, and I still needed three fistulagrams to get it to work right. And, in the end, it finally started working correctly. I never needed to have a central line put in, because we had the fistula far enough ahead of time.

I don't know much about Peritoneal Dialysis, except that it is easier to deal with, at home. I never went that route because I have dogs and they're hard enough to keep clean. There would have been no chance I'd have stayed sterile.

[Sapphire187]

I would ask about the different types of dialysis (There are 3 main types of dialysis: in-center hemodialysis, home hemodialysis, and peritoneal dialysis). If you choose hemodialysis you will need a vascular access (fistula, graft, catheter). The fistula is considered the “gold standard”. Next would be a graft (flexible tube) and last resort choice would be a catheter. No matter what you get, there could be complications, but it is less likely with a fistula. If your veins aren’t that great or are small, a graft would be the next best choice. You will want to get your veins mapped first if you go with hemodialysis. Hemodialysis can be done in-center or at home.

Then there is peritoneal dialysis (PD), which they say is easier on your body than hemodialysis. For this you will need to have a tube put into your abdomen for access to do PD.

I would ask about the possibility of getting an evaluation for a kidney transplant.

There is lots of good information on the internet. I would check out the following sites: kidney.org, azuravascularcare.com/infodialysisaccess, aakp.org, lifeoptions.org, freseniuskidneycare.com, davita.com, mykidneylifeplan.org

[Escabeche in reply to Sapphire187]

Thank you! Now I feel I’m on the right path for going beyond condescending specialists ((‘we’ll do whatever is best for you), to finding information on my own

[Sapphire187 in reply to Escabeche]

Glad it was helpful and good luck!

[CatsAreTops in reply to Escabeche]

engage with another specialist.

[anemraz]

Please consider changing your doctor if they are condescending towards you. This happened to me when my mom was entering dialysis at age 67. You NEED good consultants to guide you through the process. Had I not changed my doctor, I'd be in the dark.

[MToQ]

I agree. You have to advocate for yourself (your husband). Keep switching until you find someone that gets you/Husband.I did PD at home. If you go this route, just stick to the instructions even tho you will know them by heart after a few weeks. Don't skip any steps. Don't jump ahead. This will keep you on track and clean. Keep masks on while connecting. I never got an infection.

I preferred PD bc then I could have days to myself/friends/family and really didn't have any fluid restrictions.

Good luck!

[Escabeche in reply to MToQ]

That helps thank you MToQ. I wonder why I didn’t think of connecting before

[Erifre]

Hi Escabeche!, Don’t be afraid to switch doctors, if you don’t feel comfortable, go with another one. Finally the most important source of peace for you as a caregiver will be depending on the doctor and your nurse. In our case, my husband has been doing PD, I take care of him. We have 2 indoor 70 pound dogs, so it’s ok to have them with you, the only thing you need to do is to keep them always out of your bedroom. In our case that’s the only part of the house out of bounds for them. Dialysis, no matter which one you choose is a tool that helps your husband to go on with his life, and that includes your dogs and the activities you use to do, that’s why it is important to have somebody in your corner, and that is a medical team you trust. Dialysis is a way to navigate the wait until you get a transplant, so try to get him on a list and explore all dialysis possibilities in order to choose the one that is best for your husband. In this site you can ask anybody and I’m sure you can find good things about all options. In our case, I can only speak about peritoneal dialysis, my husband has been doing PD for four years and never had any infections so far. We were told that PD was a privilege, it was easier for his body and we have been able to continue with our lives with no other change than having to set up a machine (cycler) at night to have his treatment. We have been able to travel in and out of the country as well. Keep calm and study all options, then decide. Work at the same time adding him to a transplant list. I wish you the best of luck!, everything is going to be ok.

[Escabeche in reply to Erifre]

This is so reassuring! Thank you. I’ll look into that. It’s not easy in England, but it’s not impossible to get someone else.

[Darlenia]

I'm also a caregiver - my husband lost his kidney function too. My husband was put on emergency Hemodialysis and switched to Peritoneal Dialysis soon thereafter. My Kidney Life Plan is a wonderful site that describes the various forms of dialysis and their advantages and disadvantages. See link here: mykidneylifeplan.org/#erye-... It's important to click the + signs next to the items listed. It includes a questionnaire that you complete for personalized results. I was gratified with the outcome of that survey; it supported our interests and confirmed what his nephrologist said too. Generally speaking, a transplant is recognized as the optimum solution. So we quickly started that process while my husband was on dialysis. My husband received his gift at age 71 - one year after he started dialysis. It's changed our life in a positive way. As one caregiver to another, the journey ahead is truly difficult. We often aren't involved or notified about our loved one's disease until it's too late. So there are huge decisions to make with little time or info in hand. The situation also can seriously impact our own life - transportation issues, nursing woes, money concerns, and more. Stress leading to insomnia was a big issue for me. If possible, try to attend the doctors appointments with your loved one. Knowledge and "staying in the loop" bring direction and peace. Throughout, please remember to take care of yourself - don't let your own health run down, don't put your own appointments on hold, etc. Reach out to your own doctor as needed (including for stress). Simply be mindful that one can't pour from an empty pitcher. Please check back with us anytime - we're here for you and we care about you. We've walked in your shoes. Hugs!

[Escabeche in reply to Darlenia]

Deeply grateful for this Darlenia🙏

[Escabeche in reply to Darlenia]

this made me cry ❤️

[Darlenia in reply to Escabeche]

You will find your way out of the darkness...one step, one decision, at a time. Rest, repeat. The chaos and despair will slowly go away as you find your way. Please reach out to us anytime. We're always here, to lift you up, to offer our experiences, and to encourage you. Life isn't over; you will smile again.