IHD has temporarily ruined my outlook

[Triker]

I do in-clinic hemo 4 times a week. It has been as much as 6 days a week. I've gotten better. Reading the posts, I find that "Oh my gosh! You should learn to control your fluid better!" As hard as I try, 4 times a week is as good as I seem to be able to do. I get the same reaction from the doctors and nurses. I feel like some sort of failure, because I can't seemingly deprive myself of fluids to the extent expected of me. I'm noncompliant. I hate that word! (Just because I don't fit someone else's mold.) I've searched for other modalities to allow me to conform. I fit well with a PD cycler, but had terrible side effects. I had IBS like systems, constantly. Also, I'd likely be on for 11 hours nightly. I would hate to be hooked to a machine that long, everyday of my life. I also hated that my tummy was nearly twice it's original size. I'm single, and wonder how I'd ever find a potential partner that way. I think it would scare them to death. Other daily options are not available to me. The doctors and nurses have stopped harping at me, and only politely caution me from time to time when I get carried away. I was okay until I started reading IHD, then I became displeased because I couldn't find a way to conform. I really wish I could find a mode that worked well for me, but since there isn't one available, I have to learn to be happy once again. Thank God for dialysis, no matter how inadequate it is. I have to remember that the days I have left are a bonus, and I should live to enjoy them!

I feel better already.

[angieskidney]

I know what you mean. On PD I could drink but on HD I can't. On PD I had IBS symptoms that they deny as related. On HD I don't have the same symptoms. On PD (since it was every night) I slept better even though hooked to a machine. On HD when I get home free from the machine I have trouble sleeping. Odd. On PD I never had to even watch my weight until I started having the IBS symptoms and was retaining fluid. On HD I come in heavy (3 - 5 kg each session at only 64kg) 3 days a week. I feel as if they see me as "noncompliant" even though I am trying my best! I would love to see them try this diet! Them walking around the dialysis unit with thier bottles of coke and huge coffees. They can't even go their entire shift without a drink (can't they wait til break? lol). Yet we have to deprive ourself of drinks. I keep telling myself to pretend it is like those days were you fast. But I just am so darn thirsty all the time. Grr..  What to do.. what to do ...

Even desperate enough to consider buying a DigiStraw! 

[Triker]

I know what you mean. On PD I could drink but on HD I can't. On PD I had IBS symptoms that they deny as related. On HD I don't have the same symptoms. On PD (since it was every night) I slept better even though hooked to a machine. On HD when I get home free from the machine I have trouble sleeping. Odd. On PD I never had to even watch my weight until I started having the IBS symptoms and was retaining fluid. On HD I come in heavy (3 - 5 kg each session at only 64kg) 3 days a week. I feel as if they see me as "noncompliant" even though I am trying my best! I would love to see them try this diet! Them walking around the dialysis unit with thier bottles of coke and huge coffees. They can't even go their entire shift without a drink (can't they wait til break? lol). Yet we have to deprive ourself of drinks. I keep telling myself to pretend it is like those days were you fast. But I just am so darn thirsty all the time. Grr..  What to do.. what to do ...

Even desperate enough to consider buying a DigiStraw! 

In searching for a better way, I find that there are probably better ways, (ones that would fit into my lifestyle), but they aren't available to me, either because of my location or because of my lack of a partner. I guess I'm doing the best I can, given my circumstances, and can be glad to enjoy life, as best as I can. There are those who have it much worse than me, and for that I am fortunate.






EDITED: Fixed Quote - Quote should come first then the response - Rerun, Moderator

[livecam]

I hate to be gruff about this but if you really want to do well you will find a way to do it.  If you are thinking of a transplant they will look at dialysis compliance history as part of the decision they make in the listing process.  You really can do better if you want to.  Play their game and remember that dialysis is temporary if you let it be...you will get a transplant and this will be done.  I want a trike!

[George Jung]

Keep your head up man.  You are defiantly not a failure even though you may feel that way some times.  How do I know this you might ask?  Well anyone that has a stroke or two and gets themself a Trike so they can keep on riding is pretty cool to me and someone I would look up to.  Forget all that other s*!t If I were going to the center 5 or 6 times a week there would be no telling how I would feel.  I am there 3 times  a week which until very recently I would have a bad day each time from so much fluid gain.  Keep using that negative emotion to make something good.  Even from where I'm sitting right now (in a dialysis chair), bad can be good if I make it so.

Take is easy.

[Triker]

I hate to be gruff about this but if you really want to do well you will find a way to do it.  If you are thinking of a transplant they will look at dialysis compliance history as part of the decision they make in the listing process.  You really can do better if you want to.  Play their game and remember that dialysis is temporary if you let it be...you will get a transplant and this will be done.  I want a trike!

I don't consider it gruff. I'm just being realistic. Currently, I don't find a technology that fits my desire or needs, and is available. NxStage sounds like it might work well for me, but it isn't available in my location, and I don't have a partner. My looking for other alternatives, and not finding one, caused me to become somewhat unhappy. Not everyone wants to get a transplant. I  jumped hoops to go though testing for about a year, and finally had to have some of the tests redone because they were too old. I finally gave up on the idea. I will be 55 years old this month. I optimistically consider that a transplant would be at least three years away. That would make me 58. After not having worked for over 7 years now, it seems a little late in life to embark in a new career, and it would be too late for me to earn any sort of retirement. A transplant comes with no guarantee, anymore than dialysis does. There are younger patients that deserve a transplant more than I do. Most often, I am happy and optimistic about life in general. If I remain that way, keep my eyes open, and am patient maybe another process will come to me. If not, I hope to continue to be happy all the same. My rant was just about making a self adjustment to myself, and changing my attitude. As for my fluid problems, I'll continue to do as best as I can. If I die tommorrow, I've lived longer than I would have without dialysis, and hope to go to a better place. We all have our own crosses to bare. Mine is fluid restrictions.





EDITED:  Fixed Quote - Quote should come first then the response - Rerun, Moderator

[Triker]

Keep your head up man.  You are defiantly not a failure even though you may feel that way some times.  How do I know this you might ask?  Well anyone that has a stroke or two and gets themself a Trike so they can keep on riding is pretty cool to me and someone I would look up to.  Forget all that other s*!t If I were going to the center 5 or 6 times a week there would be no telling how I would feel.  I am there 3 times  a week which until very recently I would have a bad day each time from so much fluid gain.  Keep using that negative emotion to make something good.  Even from where I'm sitting right now (in a dialysis chair), bad can be good if I make it so.

Take is easy.

Thanks, George. Yeah, my trike helps me happy, when the weather is nice! 






EDITED:  Fixed Quote - Quote should come first then the response - Rerun, Moderator

[George Jung]

Hey bro....no worries.  Like you said, everyone does have their own crosses to bear.  I have never walked a day in your shoes so I cannot say how you feel or how you should feel or what YOU should do.  All I can do is speak from my heart based on the information I have.  I'm telling you I think you're alright and I admire your positive attitude.  Everyone is entitled  to our emotions and you should come here to get it out.  We're here for eachother.  Later....

[KICKSTART]

I dont understand why you have to have a partner, is it for a certain type of dialysis? I'm single and do CAPD but i still get the old fluid restriction thing too! I dont like going around looking 6 months pregnant, having always been very slim/skinny, but i just remind myself that its keeping me alive. I do find the not drinking as much as you want thing torture, but if i give in to temptation its not so bad , i just do an extra exchange (5 instead of 4) There is no easy answer, but you do need to find a compromise, i cant see the point in gaining extra 'time' if you are totally miserable. The doctors and nurses should give these 'restrictions'  a try sometime, then they may see we are only human. Its easy for them to say 'dont drink' they dont have to do it. 

[AlasdairUK]

(Just because I don't fit someone else's mold.) I've searched for other modalities to allow me to conform.

You do 4 dialysis sessions a week. To me that sounds as though you have found a method to cope and still allow more flexibility with your fluid. Not everyone would be willing to do the extra session. The fact that you go in centre four days week, seems to me that you are compliant. I fully understand the urge to drink copious amounts of anything. Most non-dialysis patients don't really understand how we can be thirsty all the time.

55 is as good as age as any if not a better age to have a transplant. You don't have to be too worried about anti-bodies, but what ever works for you.

[stauffenberg]

Before becoming a renal patient I lived briefly in a third world country where it was not safe to drink the local water, so all the water I drank was bottled water.  Since I had to order it once a week, I got to know my requirements fairly well, and I found I regularly drank 27 liters a week.  On dialysis, however, I was required to drink no more than 9 liters a week.  Now whenever a medical procedure demands of the patient a three-fold reduction in the fulfillment of a natural need vital for survival, it is demanding more than the body was designed to tolerate.  If you had to consume only one-third of your normal, spontaneous amount of oxygen, for example, you would be unconscious and run a high risk of respiratory acidosis.  Thus no patient should feel guilty for not being able to comply with what nature itself would characterize as the unreasonable demands of an utterly inadequate form of therapy.  On the contrary, the guilt is with the medical profession for having nothing better to offer most patients more than sixty years after the invention of the dialysis machine!  The dialysis machine was invented simultaneously with the first mass-produced jet aircraft by the Luftwaffe, and now we are in the era of the space shuttle, but who can claim that dialysis has made as much progress in that same amount of time as aeronautics has?

[Triker]

I dont understand why you have to have a partner, is it for a certain type of dialysis? I'm single and do CAPD but i still get the old fluid restriction thing too! I dont like going around looking 6 months pregnant, having always been very slim/skinny, but i just remind myself that its keeping me alive. I do find the not drinking as much as you want thing torture, but if i give in to temptation its not so bad , i just do an extra exchange (5 instead of 4) There is no easy answer, but you do need to find a compromise, i cant see the point in gaining extra 'time' if you are totally miserable. The doctors and nurses should give these 'restrictions'  a try sometime, then they may see we are only human. Its easy for them to say 'dont drink' they dont have to do it. 

I never had a problem with my fluids while I was on PD, but I was sick from the IBS symptoms. Any liittle stress, physical or mental would send me to the floor for hours. Any type of home hemo requires a partner. Most hemo fluid restrictions are much greater than PD. Of course, I still had some urine output when I was last on PD too.






EDITED:  Fixed Quote - Quote should come first then the response - Rerun, Moderator

[Triker]

Before becoming a renal patient I lived briefly in a third world country where it was not safe to drink the local water, so all the water I drank was bottled water.  Since I had to order it once a week, I got to know my requirements fairly well, and I found I regularly drank 27 liters a week.  On dialysis, however, I was required to drink no more than 9 liters a week.  Now whenever a medical procedure demands of the patient a three-fold reduction in the fulfillment of a natural need vital for survival, it is demanding more than the body was designed to tolerate.  If you had to consume only one-third of your normal, spontaneous amount of oxygen, for example, you would be unconscious and run a high risk of respiratory acidosis.  Thus no patient should feel guilty for not being able to comply with what nature itself would characterize as the unreasonable demands of an utterly inadequate form of therapy.  On the contrary, the guilt is with the medical profession for having nothing better to offer most patients more than sixty years after the invention of the dialysis machine!  The dialysis machine was invented simultaneously with the first mass-produced jet aircraft by the Luftwaffe, and now we are in the era of the space shuttle, but who can claim that dialysis has made as much progress in that same amount of time as aeronautics has?

I like your thinking!!! It is exactly my thoughts, but I couldn't say it so well. I just hope that someday the medical community will get caught up before I die! 






EDITED:  Fixed Quote - Quote should come first and then the response - Rerun, Moderator

[MJB]

I dont understand why you have to have a partner, is it for a certain type of dialysis?

NxStage is Hemo. It is advised that their be someone other than you there in case of an emergency. I know plenty who dialize alone, me inclusive, but it is really taking a risk. If I were to pass out and I pull a needle out, I would probably die. Not likely to happen, but could.

[glitter]

I dont understand why you have to have a partner, is it for a certain type of dialysis? I'm single and do CAPD but i still get the old fluid restriction thing too! I dont like going around looking 6 months pregnant, having always been very slim/skinny, but i just remind myself that its keeping me alive. I do find the not drinking as much as you want thing torture, but if i give in to temptation its not so bad , i just do an extra exchange (5 instead of 4) There is no easy answer, but you do need to find a compromise, i cant see the point in gaining extra 'time' if you are totally miserable. The doctors and nurses should give these 'restrictions'  a try sometime, then they may see we are only human. Its easy for them to say 'dont drink' they dont have to do it. 

home hemo needs a partner as I have understood it-NxStage told us definitely needs a partner. On hemo my husband gets 32 oz a day,including food.-I am curious how that compares to someone on CAPD-he has no pee either,which I know matters sometimes.what can a CAPD person have?

[brenda]

With nocturnal dialysis you don't require a partner.

[angela515]

I do in-clinic hemo 4 times a week. It has been as much as 6 days a week. I've gotten better. Reading the posts, I find that "Oh my gosh! You should learn to control your fluid better!" As hard as I try, 4 times a week is as good as I seem to be able to do. I get the same reaction from the doctors and nurses. I feel like some sort of failure, because I can't seemingly deprive myself of fluids to the extent expected of me. I'm noncompliant. I hate that word! (Just because I don't fit someone else's mold.) I've searched for other modalities to allow me to conform. I fit well with a PD cycler, but had terrible side effects. I had IBS like systems, constantly. Also, I'd likely be on for 11 hours nightly. I would hate to be hooked to a machine that long, everyday of my life. I also hated that my tummy was nearly twice it's original size. I'm single, and wonder how I'd ever find a potential partner that way. I think it would scare them to death. Other daily options are not available to me. The doctors and nurses have stopped harping at me, and only politely caution me from time to time when I get carried away. I was okay until I started reading IHD, then I became displeased because I couldn't find a way to conform. I really wish I could find a mode that worked well for me, but since there isn't one available, I have to learn to be happy once again. Thank God for dialysis, no matter how inadequate it is. I have to remember that the days I have left are a bonus, and I should live to enjoy them!

I feel better already.

I just wanted to comment on your views of PD. You say you wouldn't like to be hooked up to a machine for that long every single day, but my question to you is, how would it actually affect your life, because you would be hooked up most of the 10-11 hours while you are asleep. Let's say you are ready to settle in for the night, lay down and watch some TV and relax... you hook up, your watching tv and relaxing, time is going by... eventually you go to sleep.. when you wake up in the morning you will most likely be done. If for some reason your not you should only have about an hour left, which you could watch the morning news or whatever. So that really shouldn't be an issue, the time thing that is. Also you mentioned the tummy being twice it's normal size. I never had that problem, obviously I had a "bigger" tummy while in dwell mode, but I was sleeping, who would be looking at my tummy while im laying down and sleeping? Nobody. You can easily work your way around haveing a last fill, and go dry during the day.. therefore there would be no tummy showing issues. You would have a normal size looking tummy. As for the IBS, they have mediciations for that, even for people on dialysis... you could try as many as you needed until you and your dr's found one that worked for you.  I am also single, and wonder how I will find a partner in life, I have other baggage as well, 2 children. However, I am currently dating someone who can see past the medical issues and love me for me. Just some thoughts I wanted to share with you, to let you know it still could be a possible option for you. It would definately help with your fluid issues, as you can pretty much drink as you wish on PD... I mean obviously you cant drink gallons, but your alot more free to drink as you wish.

I also wanted to comment on the whole transplant thing too. I respect everyones opinions and options on what they want for themselves in life. I noticed you said you dont feel as deserving of a transplant, but thats not true. Your just as deserving as anyone else, age doesnt determine whos deserving. Your age, 55, very good age for a transplant, you have many years remaining in your life... and you obviously want to spend them as normal as possible since you mention finding a partner to spend your life with. It would be alot easier to find someone after a transplant than on dialysis, however you can find one while on dialysis as well, I have found my current boyfriend while I was on dialysis. You also mention the workforce as part of your reason for not wanting a transplant. You can have a transplant and not work for 3 years post... and still get disability. I'm sure since your going to be 55, you do have work experience, not sure what it is doing, but you could do anything... without having to learn a whole new field. Luckily for us dialysis/transplant patients there are many programs out there and your social worker would love to help you with these, in which they help you find jobs and see what your good at or what you want to do. Also you said the wait time of 3 years which would put you at 58, the wait time isn't a guarantee, it could be less... and yes it could be longer. All that depends on many different things, fact remains, 58 is still young... you have many years left to go.

Keep your head up!! 

[angieskidney]

I had my first transplant at the age of 16! Was I not deserving of it?


You have to do what it best for you but consider ALL of your options.

[KICKSTART]

glitter.. i am restricted to a litre and a half of fluid a day , but i still pee a lot ! I still see on here that alot of people say they didnt have the same restrictions on fluid doing PD, but its all i get from the nurses ..restrict.restrict.restrict ! They would idealy like me on a litre a day.

[AlasdairUK]

I found I regularly drank 27 liters a week. On dialysis, however, I was required to drink no more than 9 liters a week. Now whenever a medical procedure demands of the patient a three-fold reduction in the fulfillment of a natural need vital for survival.

It is just medical advice. You do not have to follow it. You could continue to drink 27 litres a week and take it off on dialysis. The long term risks though would kill you. 27 litres a week is almost 4 litres a day which is a fair amount to drink, many non dialysis people would be happy enough in my opinion to have 14 litres a week, so 9 litres for someone who is trying to stay alive without kidneys is not too much of a sacrifice.

While the concept of dialysis has not changed there have been several advancements with regards to dialysis. Ask anyone who was on dialysis 20 years ago about their treatment then and now. With regards to advancement in dialysis with taking fluid off you would have to change the way the body stores fluid in order for people not to crash with high UF rates, so what would you propose?

[nextnoel]

I dont understand why you have to have a partner, is it for a certain type of dialysis?

NxStage is Hemo. It is advised that their be someone other than you there in case of an emergency. I know plenty who dialize alone, me inclusive, but it is really taking a risk. If I were to pass out and I pull a needle out, I would probably die. Not likely to happen, but could.

I'm fortunate in that I'm still pre-D, but I am considering that if I choose hemo, I want to be on NxStage, but I have no partner.  I am thinking that I might have a friend (or a hired companion posing as a friend) go through the training with me, and be there for the home checks, and then when nobody's looking, just wing it myself!  I am aware of the risks of doing it alone, but feel that for me, NxStage would probably be my best shot at a 'normal' life, and well worth those risks.  (One factor in this thinking is that I am already 61 years old, and while I intend to live a lot longer - and with my family's genes, it's likely - but it's not as if I have my "whole life" ahead of me.)

Comments?  Anecdotes?  Criticisms?  Potshots?  All replies welcome!

[Triker]

angela515: I used PD on a cycler for around 5 years. I drank all I wanted, but I hated, hated being hooked to my machine, and was only on for 8 hours daily. I only sleep for about 6 hours normally. I wanted to get up and do something when I woke. Maybe they packed me fuller than you, but my tummy was stretched to the point of looking freakish. I was never dry. Maybe thats why they had me do a daytime manual exchange. I was so full of dialysis fluid that I wasn't able to eat half what I used to eat. (I was full) When I was told that I needed to extend my time to 10 hours daily, I decided it was time to go back to hemo. As far as my IBS, I had scopes down my throat, up my butt, dyes filled both ends, xrays, cat scans, God only knows how many tests. I went to a gastroenterologist and was given prescriptions, but nothing seemed to help at all. He finally told me to leave and never come back.    Transplants have their own set of short comings, and don't come with any guarantees. At least with hemo dialysis, I know what I'm up against. I'm satisfied with the exception of the fluid restrictions, and having to dialyze at their schedule. I'm very thankful for dialysis, but think there's nothing wrong for wanting it to be better.

angieskidney: At 16 years old you were very deserving of a transplant in my opinion!

brenda: Nocturnal in-clinic hemo isn't available where I live. Maybe it will be in time, but a nurse where it is done, advised me that I would still have the same fluid restrictions. It seems like they would be able to pull more.

Until there is something better available to me, I'm going to remain thankful, and content. I don't want to stay alive forever, but I want to live til I die. I watched both my parents outlive there desire to stay alive. My Mother was on Hospice care for over two years. She was in horrible pain. I was there daily during that time. It's hard to watch. My Mom asked me to help her end her life. Of course, I couldn't do it. My Dad died three weeks after my Mother. I had my second stroke shortly after my Mother's death. When I got home from the hospital, I found my Dad in the hospital from a stroke. He had me take him home, and he was put on Hospice care. Dad had no desire to stay alive after Mom's death. Life is good for me. Still, there is nothing wrong with hoping and wanting for it to be better. I still wish there was a better solution, but until there is one for me, I want to keep my attitude right. My ranting is just part of my keeping my attitude right.

[Triker]

I dont understand why you have to have a partner, is it for a certain type of dialysis?

NxStage is Hemo. It is advised that their be someone other than you there in case of an emergency. I know plenty who dialize alone, me inclusive, but it is really taking a risk. If I were to pass out and I pull a needle out, I would probably die. Not likely to happen, but could.

I'm fortunate in that I'm still pre-D, but I am considering that if I choose hemo, I want to be on NxStage, but I have no partner.  I am thinking that I might have a friend (or a hired companion posing as a friend) go through the training with me, and be there for the home checks, and then when nobody's looking, just wing it myself!  I am aware of the risks of doing it alone, but feel that for me, NxStage would probably be my best shot at a 'normal' life, and well worth those risks.  (One factor in this thinking is that I am already 61 years old, and while I intend to live a lot longer - and with my family's genes, it's likely - but it's not as if I have my "whole life" ahead of me.)

Comments?  Anecdotes?  Criticisms?  Potshots?  All replies welcome!

I'd like to try it, but it's not available where I live. I'd take the risk of doing it alone, but I have an arm fistula, and I don't know how I'd pull the needles out one handed. If I had a leg fistula, I think I could do it.

[stauffenberg]

I remember reading an article in the New York Times in 1975 about a portable hemodialysis machine which could be contained in a backpack, hooked up to the patient's circulation, and would continually dialize the patient just like a normal kidney.  This was characterized in the article as something on the immediate horizon, but what ever happened to it?  There have been countless lines of research over the last 60 years which could have led to dialysis patients not having to endure fluid restrictions, such as Professor Smythe's bio-artificial, implantable kidney, the 1975 backpack possibility, the 2-hour daily concentrated hemodialysis developed in the Soviet Union in the early 1990s, etc., but none of these ever reached full development, due to one problem or another.  This doesn't even take into account what progress could and should have been achieved in perfecting anti-rejection medications so that xenotransplanted kidneys could be accepted, which would have allowed every patient to get a new kidney from a pig or a monkey at the onset of renal failure without ever having to go through dialysis and its fluid restrictions.

[angieskidney]

I remember reading an article in the New York Times in 1975 about a portable hemodialysis machine which could be contained in a backpack, hooked up to the patient's circulation, and would continually dialize the patient just like a normal kidney.  This was characterized in the article as something on the immediate horizon, but what ever happened to it?  There have been countless lines of research over the last 60 years which could have led to dialysis patients not having to endure fluid restrictions, such as Professor Smythe's bio-artificial, implantable kidney, the 1975 backpack possibility, the 2-hour daily concentrated hemodialysis developed in the Soviet Union in the early 1990s, etc., but none of these ever reached full development, due to one problem or another.  This doesn't even take into account what progress could and should have been achieved in perfecting anti-rejection medications so that xenotransplanted kidneys could be accepted, which would have allowed every patient to get a new kidney from a pig or a monkey at the onset of renal failure without ever having to go through dialysis and its fluid restrictions.

I have heard a lot of methods don't make it if they won't make any company's money ...