I am sure there is already a thread on this somewhere, but there may be new people with input.
What I would like to know, is why people change from one type of dialysis to another...personal experiences only please. I have researched until I am blue in the face, but you can find "why this type is best and then turn around and find why it is the worst." The above statement is referring to scholarly articles/ medical journals.
I was interested in PD, but then I have read that 50% more people will die from it, compared to hemo....especially if they have cardiovascular disease or other health problems. Considering it is a known fact, that people with kidney disease have a much higher possibility of having those problems anyway, why even allow or suggest PD in the first place? I believe this was tested through Johns Hopkins. Obviously, I would much rather do the PD w/ cycler, but if I will live half as long as I would on hemo, then by all means I would choose hemo.
Let me know what you all have been told from your nephs and if you have changed from one to another, due to medical issues, please post it on here. I have to be making a decision soon :-(
Thanks!
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Hemo vs. PD Dialysis....personal expreriences.
- By fsgsblahs
- Posted July 11, 2008 at 10:46 pm · 28 replies
- In Adults with FSGS
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- By BridgetL078
- Posted July 12, 2008 at 3:46 am
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I have been on PD for over a year now and I love it. For me it works because I am a candidate for a transplant so do not have to rely on it forever. I have to do a long treatment each night because I have no residual kidney function. i decided to to PD because of the freedom in my schedule. On PD I was able to graduate from college and now work part-time. When I was on hemo I would always feel wiped out after the treatments so it would seem to ruin my entire day. On PD i also have way more freedom in my diet which is really important since i have a hard time controlling my fluid balance.
If you need to be on dialysis for a prolonged period I am not sure which would be better but I do know that you may be able to do PD for a while and if it does not suit you well you can always go back to hemo.
I hope any of this info helps. If there are any other experiences of mine you would like to know... please just ask!
- By wilmamac
- Posted July 12, 2008 at 11:53 am
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My husband has done both hemo and peritoneal dialysis. Peritoneal being the first. Like the information above he was able to lead a normal life. Dietary restrictions were pretty much normal. He continued to work full time with little or no time off work other than when he would get an infection, which does happen from time to time. It does however limit your physical ability. The doctors got nervous if he was doing anything that requires using your stomach muscles! Also, no swimming or baths while you have the catheter as you have to take extra care not get a tunnel infection.
After two transplants, he's now settled on hemo. This didn't really happen by choice but rather a need after the last transplant failed so fast. They thought that his peritoneum would be damaged from having the first catheter and 3 surgeries (2 transplants and 1 nephrectomy at this point). Also, when they took out the catheter after the successful transplant they said they tore the peritoneum a little and had to stitch it up.
The biggest plus with hemo, at the clinic, is no machine and boxes upon boxes of supplies in the house. No breaking down of the machine which has to be done every morning. The down side is he has to leave work early 3 days a week to get to the clinic for 3:30pm. In order to keep working full time, he goes into work at 5:30am. We don't see him until 7:30 - 8pm at night which is the time the kids go to bed. When he comes home he is exhausted. He's lucky if gets to eat his dinner before he falls asleep. Dietary restrictions are really difficult to get used to but the fluid intake is the hardest, especially when it's summer and it's so hot outside. He never thought he'd do hemo but after doing home PD, he likes coming home to a house that has no sign of him having this disease. I will add that 4 days out of 7, he is very healthy, has no edema, and can do anything. He also has a lot more energy on hemo because he's not carrying any fluid during the day. He always felt bloated on PD.
I hope this helps. It's more like a caregivers point of view but I know my husband would agree with all of the above. Choose whats best for your lifestyle. If it doesn't work, you can always change.
Take care.
- By Kimajor
- Posted July 15, 2008 at 4:47 am
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I have had two transplants and have done in-center hemo, at home hemo and done PD. PD was the first thing I did and was discouraged from the first neph I had (I got rid of him). I did my own research and PD worked best for me at first because I still worked full time.
But the way the tubing was anchored in my body caused pain during drains and I don't have a high tolerance for pain. I also got a hernia. During recuperation, I switched to in-center hemo for years then a transplant that last only 6 mos. Went back on in-center hemo and then after doing research, switched to short daily home hemo with NxStage before my most recent transplant. For me, NxStage was best next to a transplant. Just my 2 cents.
- By fsgsblahs
- Posted July 15, 2008 at 7:51 pm
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Thanks for the posts everyone, it helps a lot!
It seems that the social workers kind of push the PD and I am curious as to why....maybe they are getting a cut? I also worry about having peripheral vascular disease and whichever dialysis choice will have a negative impact on that.
I love the idea of PD....less diet/ fluid restrictions, but weight gain and infections....hernias. Also, no one really knows how long you can do PD.
In-center Hemo terrifies me, because I am a complete needle phobe! Like I need to be sedated. I also don't know how I would do Hemo at home....don't you have to have someone stick you and stuff? What do you do in an emergency....bleeding, passing out, etc.?
- By wilmamac
- Posted July 15, 2008 at 9:32 pm
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Kimajor - If you don't mind me asking what made you switch to home hemo and I take it you needed to do it every night? I would love my husband to do home hemo but he doesn't think he would manage to stick himself every day!
Many thanks.
- By JulieGent
- Posted July 16, 2008 at 11:29 am
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fsgsblahs
I am currently on PD, have been for just over a year, and I am switching to hemo this month. With me, PD has not been working properly and after 10 hours each evening, I still have to do 1 exchange manually each day. My KT/V numbers are good, but I started having neuropathy in my feet in January. After ruling everything else out, my Dr. believes it is from inadequate dialysis. So off to hemo. On the personal side, I will be glad to be rid of the catheter, and all the equipment and supplies. It does take over your life- in every way. I look forward to a dialysis-free house. I have a 6 year old and how I miss being able to get up and check on him in the middle of the night, or having sleepovers with him in a tent in the yard, to swim again and take a soak in a bubble bath...I will let you know how hemo is when I start- I am scared but will put it aside to keep dialysis from my family. I don't want my son to look back on his childhood and remember Mommy hooked up to the machine with her "tubie".
Best of luck to you
- By fsgsblahs
- Posted July 16, 2008 at 1:09 pm
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Julie,
Thanks a lot for your post. I have often worried about having all of the equipment at home and I think it could be quite depressing at times. I also worry about the potential physical problems of it.
On the other hand, I have heard many people who have went from hemo to PD and wished they had done it years earlier, despite the peritoneal infections, due to the freedom of it and feeling better on it. Some docs here make people who choose PD to also have a fistula put in as well, just in case it doesn't work. Maybe that is a smart idea?
We have a new dialysis facility in our town and I believe that I will pay a visit. They said it would be fine to do so, as long as the patients are willing to share their experiences. Considering they handle both hemo and PD, I am sure the staff can give me a break down of those who have switched as well.
I have also heard that people love doing home hemo too, so I guess I will remain forever confused until I am receiving dialysis! Please let me know how it all goes and add me as a friend if you would like!
Take Care-
Lee
- By fsgsblahs
- Posted July 16, 2008 at 1:11 pm
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Julie,
I just read your profile and noticed that you have secondary FSGS instead of primary. What is your FSGS secondary to? You are the first person that I have noticed to have secondary and I am curious.
- By Kimajor
- Posted July 18, 2008 at 12:19 am
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wilmamac & fsgsblahs......talk about needle phobe! OMG! That was totally me! <VBG>
When I switched from PD (no needles at all) to in-center hemo, I had panic attacks and had to take anti anxiety meds before getting stuck by the staff. Let's just say I had some control issues!!!
When I began to educate myself about hemodialysis and realize that I *could* stick myself (they always forget to tell NEW patients that you can get Lidocaine sticks before the actual dialysis needle stick to minimize pain), I learned that if I were in control of my needles and as much of my treatment as possible, I would have better outcomes and it worked!
Also, doing home hemo does require a second person usually and my husband was there as backup but I did 90% of everything myself. And as for short daily home hemo, dialyzes for short periods of time 5 to 6 times a week for like 2 hrs each day REALLY does free up more of your time to do other stuff, including work.
- By fsgsblahs
- Posted July 18, 2008 at 7:18 am
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Kim,
I have heard of the lidocaine sticks, but from my understanding, there is also a cream that completely numbs the skin. My needle phobia is beyond the pain...I have major problems just looking at them.
How do you travel doing home hemo? My husband's family and mine all live out of state, to far to drive back home the same day.
- By Kimajor
- Posted July 20, 2008 at 8:47 pm
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Hi fsgsblahs!
Traveling didn't stop me with home hemo on NxStage machine. It only weighs about 70 lb. but also comes apart so it is about 35 lb. each. the remainder of the supplies are travel-able. Of course, my hubby usually carries the machine parts but I can help with the other supplies.
And to someone who asked about a cream to prevent the pain of needle sticks for hemodialysis, the cream is called Emla. That is the name brand. I am sure there are other brands.
- By Denbo
- Posted September 24, 2009 at 3:36 am
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I am one who cramps severly and becomes extremely ill after hemo dialysis. I come down with flu like symtoms, very unsteady and my feet sting and burn to the point that I put them on a bag of crushed ice. Today was the worse...I took a vicodin and it did help but I don't want to rely on them. I have four more sessions before I switch to P.D. I have had the surgery and begin training next tuesday. I hope this works for me.
- By RiverWhispering
- Posted September 24, 2009 at 9:31 am
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fsgsblahs I just saw your question to Julie about Secondary FSGS. I have Secondary FSGS too and it means that your FSGS was caused by something like an infection or some other outside source.
- By MooseMom
- Posted September 24, 2009 at 12:53 pm
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I am so glad you asked this question because I have been in two minds about which way to go in case I need dialysis. I am/have been stable for years, but I don't know how long that will last, and I want to be prepared if the time should come.
My mother, 81, has been on hemo/in clinic for several years now, so I have a pretty good idea of what is involved there. She had expressed the desire for doing it at home, but then she decided that she didn't want the domestic chaos that would ensue.
I have a cousin who went to PD, but he has several severe infections, went back to hemo and eventually got his transplant.
I don't know if you can really make a decision until you are there. You don't know what is going to be best for you until you've actually done it.
I'm tending toward hemo/in clinic (and I may change my mind in the future) because 1. with PD, you can't swim, and going to the pool in the summer is such a pleasure for me. I am a bit of a foodie and enjoy cooking, and my pre-renal diet has pretty much taken that away from me, and I don't want FSGS to take away yet another pleasure.
The other reason may seem a bit odd. My mother is always relaying interesting stories about the people she sees on a regular basis at dialysis. I think she enjoys the company, frankly. I tend to be a bit of a hermit until I force myself to get out and about, and I am thinking that doing dialysis in a clinic would get me out of the house! Weird, I know, but all kinds of elements go into decision making.
For the time being, I am trying to keep myself as healthy as possible so that whichever type of dialysis I choose will have the greatest chance of keeping me well.
It is a difficult and confusing issue. What is a great solution for one person might be the worst solution for another. So many things to consider! Good luck with your decision. Keep an open mind and be as patient as possible; you will eventually hit upon the best treatment plan for your own unique needs.
- By hope4health
- Posted September 24, 2009 at 3:08 pm
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I've been on PD for one month, and am finally graduating to my night cycler this week which will give me more freedom.
I was told that PD is easier on your body than hemo, because you are not draining your body of blood and then putting it back in. Also, you are in balance more of the time (everyday procedure).
In terms of the studies saying PD results in shorter lifespans, that is strange because typically it is the healthier and younger who are candidates for PD. Please if you can, get more info about this.
Another factor that my doctor keeps hitting home for me is that this is TEMPORARY until I get my transplant. I am about your age and in otherwise excellent health (that's what they all keep telling me even though these past two years have been pure hell.) Dialysis long term is definitely not the way to go for someone healthy enough to have a transplant and who should have many years of living left.
On another note, I actually am beginning to feel better than I have in two and half years because of the dialysis. While its not fun, I am enjoying looking more like myself (I've lost about 16 pounds of fluid that diuretics could not get rid of) and am feeling more normal. I'm hoping to resume my active lifestyle in the next month or so once I reach a therapeutic level with the dialysis.
Hope this helps.
- By Lee-AKA-fsgsblahs
- Posted September 28, 2009 at 1:15 pm
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MooseMom-Hope4Health
Thanks for your input and it sounds like you have a lot of experience. I totally understand the social aspects of in-center hemo. Since my mother recently passed away, I really have no one except my husband...I used to have a lot of friends, but when you start caring for a parent, people move on when you are not convenient :-)..I understand comepletely.
I have researched both options to the point of mind boggling! I was leaning more towards PD, due to the fact that you are not nearly as limited in food and drink, as hemo. That is a huge thing for me since I love to cook! Plus, I have a SEVERE needle phobia...as in, I never had kids because of it!
Since I posted this question, I have found out that I have severe vascular problems. I had extremely high levels of cholesterol/ triglycerides since I was a teen, but no one treated me for it until 4 years ago...the damage is already done. I currently have severe peripheral vascular/ artery disease in my legs, as well as a narrowed thoracic aorta...only 30% blood flow from the kidneys down. I wouldn't make it very long on hemo with those problems...literally...and there is no way I will qualify for a transplant, without massive open bypass surgery that has a very high mortality rate for me. So, basically, my time is very limited once my kidneys do fail. I am not even that concerned about dialysis at this point anymore and seriously thinking of not doing it at all....
The docs told me that I will have major problems associated with dialysis and quality of life is very important to me. I would rather go out like I am now, vs. being nearly an invalid. I know that may sound morbid, but I recently watched my mother suffer horribly for 80 days in the hospital before she died of starvation, and have learned that there are much worse things than death! Terminal cancer would have been better than what she suffered...all due to the failure of the CVU nurse to do her job.
Thank you both for your responses and I wish you much health for your future. The nice thing about dialysis, is the fact that you can switch modalities if it's not working out, and that kidney failure does have life prolonging alternatives that other organs do not. Keep me posted, as I would love to know how it's all working out!
- By Phylllis
- Posted September 29, 2009 at 9:39 am
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Hello BridgetL078:
Well, actually, I had been on PD for 4.5 years when I contracted a septic blood infection that nearly killed me, and had to go back on Hemo. I too am a candidate for a trasplant however, after 6 years I haven't receiveded mine yet but I do believe that I am higher on the list. I am awaiting the time period for my peritonium to heal and then they may ask me again to go on Hemo, however, I think I'll stay on this because it allows me to not have to deal with all the other stuff one gets when on PD, i.e., supplies, machine, etc.
- By MooseMom
- Posted October 1, 2009 at 12:59 pm
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Hi Lee/fsgsblahs,
Deciding against dialysis is certainly a valid option, and I can understand why you might be leaning this way. Quality of life is underrated; doctors are of the mindset that they have to do something, anything to keep you alive, and I imagine they don't always fully understand the consequences of their decisions. Ultimately, you are the one who has to live your life.
Do you think that ESRD is close at hand for you? How much renal function do you have left, and is your condition stable or deteriorating?
When you were a teen, did you know about your high blood lipids? Why were you not treated then? When I was first diagnosed 18 years ago, no one mentioned anything about the high cholesterol/triglycerides that go with kidney disease. I had never had those things tested until 5 years ago when I had a checkup for insurance purposes. I was immediately referred to a nephrologist who started treating me aggressively, and my blood lipid levels went down immediately and have been normal for years now. But I do wonder about vascular damage that had been caused. No one has said anything about any residual damage, and truthfully, I'm too afraid to ask.
Is anything being done for your vascular disease? Your docs seem to have outlined the problems; have they come up with possible solutions that you are comfortable with?
- By RiverWhispering
- Posted October 2, 2009 at 10:37 am
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FSGSBlahs just curious how old you are. So your doctor said once your kidneys fail you are as good as dead? You said "I currently have severe peripheral vascular/ artery disease in my legs, as well as a narrowed thoracic aorta...only 30% blood flow from the kidneys down" Why is it that if you have dialysis with these other problems that it would mean you don't have long to live? I'm not trying to be mean I just want to understand why you would maybe choose to just give up and die when the time comes that you need to be on dialysis?
- By Lee-AKA-fsgsblahs
- Posted October 5, 2009 at 10:45 am
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River-
I am 40...when you have vascular problems like I have, it is considered that it is systemic, including the heart, and/or the brain. I also have raging high blood pressure, take 8 meds just to keep it at 150/70...still well above the accepted CKD levels. People with kidney disease don't die of kidney disease (usually), they die of cardiovascular disease/ coronary artery disease/ cerebral vascualr disease...ie., stroke, congestive heart failure, or heart attack. It is not usually if, it is when....according to the medical society, people with kidney disease are automatically assumed to have one of these problems, even if they are not aware of it....just the nature of the beast. My dad died at 60 after his 6th massive heart attack, 3 open surgeries, abdominal aorta aneurysm, and half of both feet amputated.....my mother head heart problems and pulmonary hypertension, diabetes, and several other things....her mother also had an aortic aneurysm. I am currently being monitored for my potential one now. So, in a nutshell, I am way farther advanced with these problems already and dialysis will make me a time bomb...hemo is very very hard on your heart and mine probably won't last long with my history. Of course I would listen to my options, but I will demand to know "my" statistics/ success rate first...if it is bleak, then why should I ruin what quality of life I have left, before it kills me? Sure, I have hope and all of that, but I am also a realist and like to know the facts and what I am really up against. I know that I will not be eligible for a transplant and dialysis will be permanent as long as I can stay alive.
Again, I am not trying to be morbid and I am not bummed out...it's just the way it is for me. Unfortunately, I have learned way too much medically and wish I didn't know half of it, but I do.
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