This is my first post here. I'm also a member of kidney disease hub. My eGFR hovers around 30 or down a few points either way. It was 39 then my neph, in Jan, had the new eGFR test and it dropped about 10 points. Now she wants me to think about dialysis.
My question for you is 1) which did you choose, home or at a center? and 2) why? I'm 80 and I'm contemplating not doing it at all, instead taking a conservative approach to see how far that gets me. I have 2 other chronic conditions and recurring and moving pain.
Thanks in advance.
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jodaer
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HI Jodaer, the choice is yours to make, do not let anyone tell you otherwise. I can share my thinking as to what I am doing. Iam 69 years old. I will be doing in home hemodialysis, My choice was because I want the flexibility to do dialysis when I want. And I may have to do it more often, but for sorter amounts of time, like an hour and half. I can do computer work during or just read, which would be a true joy. I seem to never have time to read. Why I choose that method also was because I did not want to do PD. I have to watch my weight and diabetes, and PD uses a glucose based product dialysate. It would not be good for me. I also want to keep swimming and I cannot do that with PD. In center would be my next choice but I do not want to have to travel to do dialysis.
Just something to think about. Why is the doctor pushing you at this point to dialysis? A GFR of 29? Mine was that many years ago. With proper management of food and consumables, you may be able to stay off dialysis for a while. But if it keeps dropping that fast, being prepared is a good idea. It takes time to get a fistula placed and ready to use. Just for your info, I am at a GFR of 13, and although I am preparing, I am not going on dialysis anytime soon.
Oh Jodaer. This is such a difficult situation to face. I feel for you. My personal opinion is that some seniors with an eGFR of 30 live just fine without dialysis. For example, my friend's mom reached 100 with her eGFR in the single numbers without any need for dialysis. I think the body just slows down in general. I also know that additional factors, no just GFR, play into the decision when to start dialysis; e.g. blood pressure, BUN, creatinine, etc. In my hubby's case, his blood pressure became erratic, eventually became uncontrollable, and dialysis was started to bring it down. GFR didn't really play much of a role at all. So it's important to keep an eye on the big picture, to ask questions, to check how feel day-to-day, and to stay focused. You have the power to proceed or to hold off - and that's important to remember. As for type of dialysis, should that be necessary, your nephrologist will go over your options. Together, you and s/he will make the best choice for you. My hubby immediately picked peritoneal dialysis since it doesn't involve blood and needles, is easier on the cardiac and vascular system, and was preferred by our transplant center. It worked well for him. He also managed to get off insulin completely while on dialysis even though the solutions (except one) are glucose based. However, since his transplant, we've agreed that in-center hemodialysis would now be our choice should his transplant fail. We're both in our 70s and neither of us is up to doing the work that both home hemodialysis and peritoneal require. So different life stages, different decisions. Take your time, Jodaer, to think things over. I sense you'll find peace and empowerment in whatever path you choose to take. Hugs!
I am 81, almost 82. I made my decision in 2017, soon after I was diagnosed. I do not want to undergo dialysis. In the even of kidney failure, I would plan on Palliative Care. I support everyone's ability to choose what they feel is best for them.
I am on haemodialysis. I know a few people at the unit in their 80s. One in particular stands out. She was a bag of nerves. Shaking constantly and very frail. She just didn't want to be there. Her family insisted she at least tried it. After 6 months, we couldn't believe it was the same person. She strides in and has a glow and a new zest for life. She even drives herself in. When she first started she needed help just walking in the entrance. However as others have said, your GFR is still quite acceptable. When you are down to 9 and 6 as I was..a gfr is great!! Wishing you all the best x
Hi Joader, I hope you are ok. Everybody can have different opinions about dialysis, and it is ok. Either PD or Hemo just like everybody said, the choice is yours, and only yours to make. I can share our experience, maybe it can help you a little bit. My husband is diabetic, he had a eGFR of 14 for over 4 years, it was controlled with diet and tons of medicine for lowering potassium levels, blood sugar, creatinine, well, you name it. He was on a no-protein diet. When he dropped to a eGFR of 10 he had the chance to choose between PD and Hemo. He chose PD, at first it was hard, a lot of information to digest, two weeks of training, getting used to the machine, etc. But a couple of months after, everything went better. His levels improved, blood pressure normalized, his blood sugar is much better, despite the solution he uses is dextrose, which is mostly sugar in a bag, he changed his diet, so now he can go to a steakhouse and enjoy a nice cut. But the best part of it is that he has the chance to get his treatment while he sleeps. He wakes up in the morning, and goes wherever he wants during the day. We have also being able to travel abroad! Yes, he can not swim, but he enjoys the opportunity of visiting places and do more things. We have been living like this for 3 years, and yes it is a lot of work, but it is worth it. It becomes a lifestyle, and once you get used to it is easy. I help him everyday to connect and disconnect him from the cycler and to check his diet, etc. I can tell from what we have experienced that PD has helped him a lot!, I wish you the best of luck, take your time to think about all options and choose what is best for you! We are all here to help!
It took me around 10 years to go from 30 gfr to needing Dialysis.. and when i need need Dialysis , I chose PD at home and I am happy with my choice...been 2 1/2 years with no real problems , but i also do not have other morbidities....Just continue to eat well and do things you enjoy...Praying for you to make the right choice for you
Hi, thank you for the replies. To clarify my eGFR didn't really drop 10 points but my neph ran the newer test instead of the old one. So, while the numbers dropped what is going on in my body didn't change. Does that make sense? Anyway, I think it threw her for a loop and I think she suggested that I think about dialysis and research it so when/if it comes time I will be informed.
I absolutely do know it's my decision. I've many arguments with doctors over this. Thanks for the info, it gave me plenty to think about. As of now I'm leaning towards not doing it and taking the conservative approach. That could change down the road as my life changes but unless the pain magically disappears, I doubt it will.
I wouldn’t do either. PD is gentler but it is also nightly. The bags are 15 pounds, it’s a lot of cleaning and sterile procedures to avoid a very bad infection. The delivery boxes monthly are about 40 boxes so you need some space to stack those and break them down for garbage. It’s an all day project. Setting up the machine requires many steps. You have to go to the dialysis center anyway for labs and appointments and your care is changing constantly. It’s a lot of med changes. Your weight fluctuates, you’re tired, it’s nerve wracking to have a tube in your side forever and I never felt great. It was a full time job keeping up with everything. Home PD requires some knowledge of medical equipment although they will train you. I say quality over quantity. That drove me nuts mentally and physically. If never do it again. Ever.
Hi jodaer my doctor put me on hemodialysis with that said I choose to do in center so I could ask questions about hemodialysis and I had a lot of questions. I have made friends and I don't feel alone I can relate to others who are going through what I am going through. It's very important to do your homework on dialysis centers will you get good care, the location and etc... Here's the website medicare.gov dialysis facility.
I am 77. I have recently gone on PD dialysis and although there is a learning curve with the machine, I think I am happy with the decision. My cousin's daughter is going to the centre for hemodialysis and it seems to be working out all right for her too. The important thing is to prepare yourself with the information and make a decision that fits you and your lifestyle. It is possible that you will not be going on dialysis anytime soon with those numbers, but knowledge is always a good thing to have. It certainly is time to think about it.
The machine is very easy to set up. I have an Amia and it is very user friendly. Baxter brings the supplies every two weeks and you do have to have room for that stuff as well as dealing with more garbage from the solution bags. The city gave me another black bin for that and there was no charge as it was for medical reasons. So, with that all taken care if, it is up to you to decide what you want to do.
If for some reason the PD did not work out, I could change to doing it in a centre, but this is so much more convenient for me at this time. I hope you don't have to do it for some time yet, but being informed is the key.
So, are you saying there are bodily fluids I would have to dispose of if I do it at home? Also how much room does it take to store the materials and whatever else?
OK. This is how it works. The Amia machine is set up with three bags of fluid. This fluid is put into your body and then removed. Mine is four cycles a night. This fluid must go somewhere and there is a drain bag that it goes into. This is emptied into the toilet or shower in the morning. The other option which is what I use, is that the fluid goes directly into a drain and there is no drain bag to mess with. I find it heavy and awkward and it is much easier for me to just put the drain line into a drain in the bathroom.
The drain bag should be inspected each day to make sure it is not cloudy...or has a lot of fibrin in it. Cloudy means that there may be an infection. If you use the open drain, as I do, there is a smaller sample bag so that this fluid can be inspected. I use a sample bag every couple of days.
The solution....well, there are three strengths. 7.5 is used every day. There are five of them in a box. The other three are 4.5, 2.5 and 1.5 and you will use two of these each day as directed. There are two of them in a box.
I get delivery every two weeks, so I would need enough for 15 days....so, there are some boxes that you will need room for and a lot of cardboard to dispose of. I am able to get most of it into the recycle bin provided by the city and there are public places to recycle cardboard too if necessary.
You will learn all of this when you do the training to use the machine. The machine itself takes a few minutes each day to set up and I do it early in the day so I only have to hook up to it when I go to bed. It will wait patiently for you for hours! It has a heater in it, so you don't have to heat the solution that goes into your body.
The machine itself is very easy and user friendly. It has a little touch screen on it and all the directions are voiced, written and demonstrated. If you can use an iPad, this thing will be no problem at all. The training I was given was very thorough and easy to follow.
At first, they had me learn how to do this manually...which isn't much of a trick either. It requires an IV pole and about 45 minutes four times a day. The machine is used overnight and I am on mine from midnight to 8 am, so can sleep through it and have nothing else to do with it all day except for about 15 minutes to set it up. I much prefer the machine, but you need to know how to do the other manual thing as well in case of power faliure or something.
The additional thing is that the machine has a modem which transmits the results to the clinic each day when it finishes and you can call them, or they will call you if there are any questions. Very helpful and very supportive.
I don't know if that answers your questions or not...but feel free to ask more if you like
Just wanted to say I am 82 and have had many of the same questions that you do. Dialysis or palliative care??? Currently my GFR is 17 and so dialysis is still a ways off as it must be for you with a GRr of 30. You can last a long time if you follow the renal diet and may never need dialysis. Certainly it is a difficult decision and I find I vary from day to day depending on how I feel. On days when I am nauseated and exhausted I am ready to give up then I have days when I feel OK and want to keep going. so I understand your indecision and just want to say hang in there for a while .
Yes, that's exactly how I feel. I think I have a long way to go but will know better when I see my next labs. I think I have already made the decision to not do it at home. I live alone and in a small apartment. I'd rather get out a couple days of the week than sit home doing it.
I think there is good reason for you to go out and meet other people in the same circumstance. In this city we have transportation that will pick you up and bring you home for the price of a bus ticket and in bad weather or if you are not feeling well, it is a great option. Remember that you will have to get there and get home and may not always feel up to driving yourself. The clinic here would help a person arrange all of that. It is your choice and what you feel most comfortable with that is important. I don't think there is any wrong decision.
Thanks, that is way more than I've been able to learn online. It sounds, not really complicated but involved. Thanks so much. I don't drive anymore but there are transportation options for me. I have enough trouble sleeping at night so nighttime wouldn't work for me.
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