Starting Dialysis

[Retirement2023]

My Husband, age 79 , will be starting dialysis in the next few weeks. He has chosen Hemodialysis in a center. Can you give me some honest tips about what to expect?

[Baddstuff]

I did hemo just for a few months. I have been on PD most of the time. My hemo sessions lasted 4 hours. I would try to nap. The main thing for me was to let the technician know when /if I started feeling lightheaded so they can make adjustments to the machine. Aside from that it was pretty uneventful. I had a temporary connector under my right shoulder, I did not have a fistula. I don't know if fistulas cause any issues. Maybe someone else can answer that. Good luck to your husband.

[Baltoadv in reply to Baddstuff]

I've heard that PD is less rough on the body than hemodialysis, including feeling less tired after the end of a session. What was your experience?

[Baddstuff in reply to Baltoadv]

I don't like hemo because it involves actually going to the dialysis center while with PD I stay home. And hemo deals with the blood where PD does not. My first hemo session was terrible. When I was done and was leaving I could barely walk 20 feet before having to sit down. I felt terrible. The following sessions were much better once I knew to let the technician know when I was feeling lightheaded. Once I was done I could get on with my day without any issues. Overall I felt fine. The fluid intake restrictions were tough. Since PD is every day it's much less restrictive. PD is a lot more work but it is my preferred method. I have more control with PD. As long as my blood pressure is right I'm good to go.

[Ziggydoodah]

I have been on Haemodialysis for 12 months now. I am based in Scotland so there might be different protocols etc in your country. I wont lie and say it has been easy. First session only lasted a couple of hours and no fluid was taken off. I felt brilliant not just physically but mentally too. It never happened again. I have a fistula and it was extremely painful getting the needles in. My arm was covered in the most amazing bruises after a couple of weeks. Also your husband will probably start to crash at some point in the beginning. He must be aware of any changes, whilst he is in the machine. I start to feel a bit hot and sweaty, the nauseous. As soon as he feels like that, tell the staff. Do not feel embarrassed etc. Everyone has experienced it and the staff would rather you warned them before "crashing"...He will have to get used to restricting fluids etc. After the novelty wears off, then there will be the mental struggles...the grieving for the life you have left behind and the realisation this is your new life. You will struggle to have holidays and a social life but it is possible. Now that I have completely depressed and horiffied you both, now come the positives!! I have actually made good friends with some if the other patients. They have usually gone through the same as yourself or worse. They have advice or just saying..I get it can make you feel you arent alone. I hadn't met anyone with kidney disease before dialysis and now I'm surrounded by them 🤣🤣🤣...Do I feel any better, some days i think nothing has changed and then I see photos before dialysis and I look like death warmed up. I have more stamina and people say they can see a big difference in me. It also makes me aware that there are lots of people worse off than myself and it does make you grateful. Wishing you and your husband all the best. He will be grumpy and possibly a bit depressed at this change in his life. But I have the feeling the two of you make a good team and will just take it in your stride. You are stronger than you think. If I can be of any help, let me know xx

[Ziggydoodah in reply to Ziggydoodah]

Oh and take a book or laptop. Four hours is a long time, when you are connected to a machine 😳😳😳

[Ziggydoodah in reply to Ziggydoodah]

Excuse the spelling. Just home from work!!

[Retirement2023 in reply to Ziggydoodah]

Thank you for your honesty and humor. I know this will not be easy, hopefully my husband will adjust. He knows all of his options, the social worker assisgned to him has been amazing. Hopefully he is able to make the necessary adjustments. I will let you know how this goes.

[bumblebee_tuna in reply to Retirement2023]

I know he already chose Hemo, but his doctors are probably pushing for PD because he still has a good amount of residual kidney function. PD is a lot of work, but if you have an eGFR of 13 and that's a a good residual function and make he doesn't need to do that many exchange (possible start with just one a day). He doesn't have the machine, he can just do CAPD - that's what I do. The exchanges are really not difficult once you get a hang of it. Just time consuming.

[Ziggydoodah]

Keep us updated. Remember we are all here to help and support you. Its a difficult time for family members too. So you need to look after yourself too. Take care x

[cs65 NKF Ambassador]

Hi, I just wanted to add that Ziggydoodah's comments are right on the button! I did in center hemodialysis for 4 years and experienced everything that she did. I can add that it will be a month before they will let your husband drive himself to and from treatments because they can make you lightheaded and foggy while you're getting used to having fluid taken off. You will learn all kinds of things like what to eat and not eat and how much fluid to take in each day. These things are important because they can affect how you respond to the treatments. Pay attention to what the renal dietitian, the nephrologist, the nurses and techs tell you and feel free to ask them lots of questions - they are there to help you get through each treatment the best possible way. I learned so much from my dialysis staff and thank them so much! If your husband has a fistula already the nurses can provide a numbing cream to apply an hour before the treatment to help take away the pain of inserting the needles. My husband used to take me to my sessions at the beginning and I think he was more affected than I was, so you both need to take care of each other and respect each other's emotions to get through this major change in your lives. I started dialysis in my mid 60s and received a transplant at age almost 69, so don't be afraid to consider that option, too. Good luck to both of you!

[Darlenia]

Like you, I'm my hubby's care partner. My hubby was sent to our local hospital for emergency hemodialysis a few months before he turned 70 to bring down his out-of-control blood pressure. There, he was fitted with a temporary chest cath, and started on hemodialysis - short and slow sessions initially at the hospital and then moved up to 4-hour sessions, 3 days a week, at the dialysis center. The only thing he experienced early on was severe leg cramping which was addressed through message and meds. His blood pressure largely stabilized (so less blood pressure meds) but there were still some very high spikes on the machine which required some setting adjustments. I drove him back and forth to the local center for a good month or so since the process exhausted him. Later, he drove himself - 20 minutes each way. Before going to his first in-center session, he was given a carry bag with necessities such as notebook, a blanket, etc. We were pleasantly surprised, but that quickly changed. Lol. I had to supplement what was provided - he needed a much thicker blanket since kidney failure makes one cold and the room can feel a bit cool too. (You may wind up wearing sleeveless tops driving your spouse to the dialysis center while he wears sweaters like we did.) My hubby also needed a thick gel type seat pad since the dialysis chairs weren't cushy at all, his tush ached being in one place for 4 hours straight. So we bought both - thick blanket and gel pad. Our center also allowed my hubby to bring in food and drinks within reason. (Not all centers do that.) And yes, while your hubby will be on a water restriction, his diet overall will likely expand as toxins are removed. Some people brought in their laptops or handhelds and worked since the internet was accessible. Others, like my hubby, simply watched TV - each chair had their own screen. My hubby was seen weekly by his nephrologist at the center and that was supplemented monthly by a team meeting - nephrologist, dietitian, social worker. The center became the epicenter for most everything - labs were drawn there, vaccines given there, meetings held there, etc. It sorta became a home away from home. Sadly, spouses weren't allowed to go into the hemodialysis portion of the center. So, I would simply go home or go on errands Later, we switched to peritoneal dialysis and then I was able to participate more. With hemodialysis, the center indeed does everything, they didn't want spouses or others to be there. My hubby received a deceased donor kidney, with conditions, at age 71. This, too, is something you hubby may be able to achieve if he qualifies. Your nephrologist and social worker at your dialysis center should be able to give you guidance. In our case, I did all the research and reaching out. My hubby was too bummed out to think about it. I simply urged myself forward, reminding myself - nothing ventured, nothing gained! Lastly, I want to tell you that my dear spouse was so haggard and ill before dialysis that I thought he wouldn't be here for long. I had a hard time sleeping, I was anxious, I had no peace. But my worries were way off! I had put myself through torture for no reason. Dialysis gave him a new lease on life. He walked out of the hospital on his own, his color was restored, and his mind was sharp. So, please don't think the worst! It may well turn out the same for you! It's important to keep a tight hand on the imagination and to live each day fully - that's the only day promised to us. Big hugs from a lady who's been there...and, in others ways, is still there...

[cs65 NKF Ambassador in reply to Darlenia]

Yes, things changed at the dialysis center when the COVID pandemic hit. We could not have visitors in the center due to pandemic restrictions, not even out in the lobby. We were brought in almost immediately after arrival (everybody has their own chair time that they're scheduled to come in) after getting our temperature check and at first had to answer questions about how we were feeling. We were told to call beforehand if we felt ill so the staff could decide if we could come in. We had one isolation room to take care of patients who were ill. The staff took many extra precautions before entering and upon leaving that room. We all wore masks all the time we were there and washed our hands thoroughly before our treatments. The staff all wore masks, face shields and gloves and gowns every time they treated us. I'm very thankful that they did all that because while I was there we rarely had one COVID infection.

[Darlenia in reply to cs65]

Is was exactly the same at ours! My hubby went into kidney failure during the pandemic - I couldn't see him at the hospital nor the center! The building and staff simply swallowed him up and I could only place phone calls. My hubby said everyone was so masked up and ghostly it was hard to identify people. Lol. Maybe it's changed since then.

[cs65 NKF Ambassador in reply to Darlenia]

It was still the same the last time I went there to bring handouts to give to the dialysis patients. I still serve as Patient and Family Representative to the IPRO ESRD Network 1 of New England from my old dialysis center. We work with CMS to provide info to dialysis patients, serve as Peer Counselors and try to provide support to the patients via support groups, etc. It is a real challenge to provide support when we're unable to meet face to face. I received my kidney transplant in December 2020 during the pandemic and the hospital had us all in a COVID-free ward. It was the same, my husband could only call, not visit and I ended up staying a bit longer due to the way I could not eat because of nausea from the anesthesia and the painkillers. I had to advocate for myself (nothing new!) to get the right medications to solve the problem. You learn very quickly to rely on yourself and never give up when you have chronic kidney disease!

[Darlenia in reply to cs65]

So glad you were able to advocate for yourself! It's not good when someone needs another another person to help follow-up with the medical, to bring up issues, to track instructions, and so forth and s/he is kept away. I'm very grateful you're serving as a Patient and Family Representative in the New England area. I'm sure you're very appreciated!

[cs65 NKF Ambassador in reply to Darlenia]

My center has an iPad that the nephrologist and staff can use at monthly meetings with the patient at the center to communicate with the family.

[Ks61 in reply to Darlenia]

Hello. I am also my hubby’s care partner. He has been on dialysis for almost 4 months now. Your post and other comments have been helpful. Wondering if anyone has any suggestions for nausea and bad taste/saliva. Thank you.

[Darlenia in reply to Ks61]

Appreciate so much hearing from another care partner! It's a situation most of us probably never thought we'd face...we're always on alert, studying our partners. I'm so sorry to hear that your spouse is having stomach and taste issues. That's always a concern. My hubby has experienced a decrease in appetite in general but it's not severe. On the other hand, I've heard of others that faced the same symptoms as your hubby is experiencing. I've noticed that, in some cases, dialysis clears it up through toxin removal. When that doesn't work, the situation seems to be related to actual conditions involving the digestive track, such as GERD, gastritis, or something similar. I'd ask the nephrologist in charge of your hubby's dialysis for a referral to a gastroenterologist or seek one out yourself if the center doesn't come through for you. My hubby saw one when he was on dialysis and that man worked wonders for him. My hubby had c-diff at the time and the gastroenterologist was very sympathetic, prescribing a medication and a probiotic which took care of matters. I think you'll be able to turn that situation for your hubby. Give it a try...action will put your worries to rest.

[Retirement2023]

Hi All,

My husband is 78, soon to be 79 in July. We are in Arizona, and the cutoff for a transplant is age 75 at the Mayo Clinic.

He struggles with technology, his I Phone and our computer, so he is not comfortable trying to figure PD equipment on his own. I would have to do all of the work at home and dont have complete use of my left arm.

(I and am recovering from a fall in October 2022 off a 6 foot ladder. I crushed my left wrist and elbow. I have had 4 surgeries so far, 1 or 2 more surgeries this fall. Then hopefully I am done with that mess).

That is why he/we decided on In Center Hemodialysis to start.

I think it is the best option us right now.

We will be assigned a Fresenius location, time and place when he starts dialysis. We may have some flexability down the road but all locations near us are very busy.

His GFR is holding steady at 13 after dropping from the high teens. Fingers crossed he stays there.

More updates soon, thank you all for your kind responses.

[bumblebee_tuna in reply to Retirement2023]

Maybe not Mayo, but some centers will still consider transplants post 75 I think - maybe for a more "risky" kidney. It is something I would look into - I am registered at 3 different centers, it doesn't have to be the closest one (although it's convenient for sure).

I hate to see a GFR of 13 going to waste - if you are assigned to a Fresenius clinic, maybe go there and ask to talk to the home dialysis nurse (if they have one). She can show you in more detail what's involved with Peritoneal Dialysis. CAPD is completely manual and does not involve any computers or machinery - you just have to be careful with sanitization and hand-washing.

[Retirement2023 in reply to bumblebee_tuna]

Hi Bumblebee_tuna,

I have to admit I am new to the dialysis journey. Can I ask you what you meant by wasting a GFR of 13. Can you explain to me.

Thank you,

Have a great day

[bumblebee_tuna in reply to Retirement2023]

At a GFR of 13 your husband still has a decent amount of what they call Residual Kidney Function. There is a lot of benefits in keeping the kidneys working as long as possible even at a much reduced capacity, dialysis is not a true replacements and some toxins are hard to remove. Also, being able to produce urine helps immensely with fluid control.

Peritoneal Dialysis is the best modality that preserves kidney function. It is just a little gentler on the body than Hemodialysis. You never know how his kidney decline will progress, he might be able to stay at 13 GFR for years or the kidneys might continue to decline.

[Retirement2023 in reply to bumblebee_tuna]

Thank you for explaining! I feel so stupid, there is so much I dont understand about all of this.

[cs65 NKF Ambassador]

I didn't start dialysis until I was at 5% gfr and because I didn't show all the classic symptoms of ESRD. I somehow managed to keep my kidneys functioning over 4 years and had 3 % function before I received my transplant. Now my kidney function is stage II instead of stage V! I have PKD (polycystic kidney disease) which can have a very slow progression to end stage renal disease (ESRD). I was diagnosed at age 50 and didn't start dialysis until my mid 60s. It is a genetic disease and my brother also has it and has also received a transplant. We're both survivors!

[LeesKees_NJ]

I've been doing Hemodialysis (in the US) for over 18 months. The first year I started, I did it at home but doing it solo was a lot of work and stress, I really needed a partner to help with machine maintenance and upkeep. So I recently went into center for the convenience factor. It's really not bad at all.

I go to a local Fresenius which is a franchise. My particular location is on the larger side and in a relatively new facility so it is a pleasant place to be. I go 3x a week (at the crack of dawn, 5 am) for 3 hrs a session. I do Tues-Thurs-Sat mornings which enables me to work a regular 40 hour week. I can't complain, really my experience has been pretty good as opposed to some of the horror stories I've heard.

IMPORTANT: Ask for a prescription for the lidocaine/prilocaine dumbing cream. Put it on your access an hour before going and you do not feel a thing when your needles are inserted.

I'm not a TV person so I bring things to do, like my iPad to check email and play games, headphones to listen to music and always have whatever my current read is. I also bring snacks, which are very important as I usually become ungodly hungry for some reason. You will also need a warm blanket because you will get chilled during treatment. The machine's constant hum will sometimes put me to sleep. Time goes pretty fast and before I know I am on my way to work.