Met a 'successful' dialysis patient

[Athena]

Recently I met a woman who was a carer for her elderly diabetic mother & I found out that she is in fact on Dialysis. After engaging in a conversation with her, I found out that she is on D for many years now & here she was wheeling her elderly mother around. I was quite amazed. When I asked her how she feels after all this time, she said that she does sometimes experience a lot of tiredness. But there didn't seem to be much evidence of tiredness during the time I was able to observe her. It would also seem that she did not really suffer from many other comorbidities (although I could be wrong, I was simply going on appearances). The cause of her ESRD was impaired kidneys at birth.

When I mentioned this to my Neph, he told me that for patients who had little other co-morbidities, it was possible to survive D quite well. In terms of diabetics, T1 usually fare better than T2Ds he told me due to this very factor.

It would seem therefore that there seems to be quite a variation in experiences and this has now made me think a little. I am convinced that life on D is a very grim existence that is like a time bomb of complications waiting to happen. I expressed this view to my Neph & I made him look uncomfortable (as I normally do).

I would love to hear from real D patients about this subject.

[Michael Murphy]

On this site people write in for advise about problems or to vent about dialysis difficulties since people don't write in to tell how wonderful the dialysis session they just had, non dialysis people get a skewed view of dialysis.  This site fulfills a much needed service by providing an outlet for patients after a bad day.  Bad dialysis do occur but my experience is that they are the exception not the rule.  You. Can learn a lot on this site, and the more you know the safer and better dialysis is.  Don't let this scare you off dialysis but even after a tough session it's still better than being dead.

[iolaire]

I'm not a diabetic and likely I'm making some assumptions that likely doesn't fit all cases.  I believe that a huge factor in being successful on dialysis is how complaint and proactive a patient you are.  Another huge factor is the other illnesses that are active well you are on dialysis.  I'm sure that the more healthy you are the better your dialysis experience will be.

I worry that a lot of people who find dialysis very hard are people who are challenged to be complaint.   For example I've seen a person in my clinic with gangrene in the foot, which I assume is a side effect of being a non-compliant diabetic, yet I still see the partner bring in donuts and candy for the patient to eat...  My assumption is that person will lose their foot and at the same time struggle with the dialysis lifestyle.

I don't really have suggestions on how someone could become more complaint, as with most things it seems like it’s a personal trait that you are born with, combined with the medical issues unique to each person.   

Last night I watched a lot of the movie Rx: The Quiet Revolution and that covered some methods across the US to help patients live better lives.  One example was in the south they are using telemedicine and iPad's to collect information and help diabetics keep up with their treatment despite living far from the hospital, it seemed to be working well.  That was in contrast to a Dr in the NE who did house calls, but still had to deal with diabetics that clearly were making poor choices despite his attempts to help them.  I liked that movie because it re-enforced the positive effect of being complaint and proactive.

I'm exceedingly successful on dialysis and hope to remain so as I loose my residual kidney function.  At this point I'm most impacted by the time on dialysis. I might need to move to home dialysis to make it easier and my diet needs to continue to evolve with changes in my residual kidney function, but I fully plan to live a long and fulfilling life. 

[kristina]

I am convinced that life on D is a very grim existence that is like a time bomb of complications waiting to happen. I expressed this view to my Neph & I made him look uncomfortable (as I normally do).

I would love to hear from real D patients about this subject.

Hello Athena,
Why should dialysis be a time-bomb? It is just another way of life and of course we have to be a bit careful about our diet, life-style, hygiene etc.
But for me dialysis certainly is not a time-bomb, not yet anyway ... it is just a learning-process and with dialysis I am introducing a new discipline into my life...
Mind you, to be quite honest, I am usually not a friend of "discipline", but in this case I make an exception...
Best wishes from Kristina.

[MooseMom]

iolaire, I saw that movie; it was fascinating.  I was just stunned to see people take such poor care of themselves. 

[noahvale]

Recently I met a woman who was a carer for her elderly diabetic mother & I found out that she is in fact on Dialysis. After engaging in a conversation with her, I found out that she is on D for many years now & here she was wheeling her elderly mother around. I was quite amazed. When I asked her how she feels after all this time, she said that she does sometimes experience a lot of tiredness. But there didn't seem to be much evidence of tiredness during the time I was able to observe her. It would also seem that she did not really suffer from many other comorbidities (although I could be wrong, I was simply going on appearances). The cause of her ESRD was impaired kidneys at birth.

When I mentioned this to my Neph, he told me that for patients who had little other co-morbidities, it was possible to survive D quite well. In terms of diabetics, T1 usually fare better than T2Ds he told me due to this very factor.

It would seem therefore that there seems to be quite a variation in experiences and this has now made me think a little. I am convinced that life on D is a very grim existence that is like a time bomb of complications waiting to happen. I expressed this view to my Neph & I made him look uncomfortable (as I normally do).

I would love to hear from real D patients about this subject.

A few thoughts/observations from someone who has been dealing with ESRD since 1978 (23+ years incenter hemodialysis/14 years transplant).

Effects on longevity:

1)    No co-morbidities or well-managed co-morbidities
2)    Age
3)    Hemodialysis over peritoneal and home hemo over in-center
4)    well-working fistula
5)    acceptance that esrd is a life-long condition - not giving in to being a victim
6)    taking control of one's treatment
7)    optimal, individualized treatment regimen based on one's needs/lifestyle
8     controlling/minimizing secondary medical complications and medication compliance
9)    understanding dietary and fluid limitations and the concept of moderation
10)  supportive nephrologist
11)  stable home and support system
12)  while understanding a healthy degree of being O/C is necessary, having a life outside of dialysis is important
13)  staying active including an exercise routine
14)  luck

Previous IHD topic addressing this issue: "What is the longest a patient has survived on dialysis?" - http://ihatedialysis.com/forum/index.php?topic=9672.0

[MooseMom]

What noahvale said...

[Simon Dog]

The jury is out on my longevity since I've only been on the hose for 3  years, but I think I'm successful.

- No known comorbidities other than a ceramic hip
- Home hemo
- Still work 30 hours a week; hope to take that back to 40 after starting nocturnal at home
- And, most importantly - still enjoy life - don't have the slightest temptation to discontinue dialysis.  Yet 

[UkrainianTracksuit]

Hi again,

I think it is a disservice to many long-term dialysis patients out there to assume that successful cases are exceptionally rare.  From this forum alone, there are quite a few members that have been living as well as possible on dialysis.  We all experience problems time to time but it does not negate the overall successes.

I don’t have long-term longevity on my side yet but one could say it is my goal.  Co-morbidities?  As you know, Type 1 diabetes.   However, when one takes away some odd skin problems and tiredness, I would say that my life on dialysis is successful.  While I know that bumps in the road will be inevitable in the future, I’m still on this earth.  Mind over matter.  If the body still wants to kick it, I have to train my mind to go along with the program.   I finished my PhD and I lecture/research for a living.  I use a lot of my time on the machine to keep up to date on current events.  I travel, eat well and am active.  Success?  I think so.

As you may recall, my grandfather is on dialysis as well.  He is pushing 90 years old and been on dialysis for 10 years.  For the geriatric folks out there, I would consider him successful as well.  You know what he hates about dialysis?  Having severe arthritis and laying in a bed.  Not the dialysis itself!  Once he got the hang of fluid restrictions, his sessions go very smoothly.  No problems to report at all.  In fact, the last anomaly at one of his sessions was a machine malfunction; not him!  His health has remained stable during this time and he lives a good life.  He’s active (goes walking, attempts to dance), travels, goes out almost every day and bosses everyone around.  The day after dialysis, watch out!  Then again, he’s tough ol’ Russian stock…

I think there are many other "successful dialysis patients" than you assume.  Good luck and be well!

[Zach]

Of course there is Bill Peckham.

A couple of years ago he went on an 8-day rafting trip down the Colorado River through the Grand Canyon.
He dialyzed during the trip on the shore with NxStage!
http://www.billpeckham.com

[kristina]

Hi again,

I think it is a disservice to many long-term dialysis patients out there to assume that successful cases are exceptionally rare.  From this forum alone, there are quite a few members that have been living as well as possible on dialysis.  We all experience problems time to time but it does not negate the overall successes.

I don’t have long-term longevity on my side yet but one could say it is my goal.  Co-morbidities?  As you know, Type 1 diabetes.   However, when one takes away some odd skin problems and tiredness, I would say that my life on dialysis is successful.  While I know that bumps in the road will be inevitable in the future, I’m still on this earth.  Mind over matter.  If the body still wants to kick it, I have to train my mind to go along with the program.   I finished my PhD and I lecture/research for a living.  I use a lot of my time on the machine to keep up to date on current events.  I travel, eat well and am active.  Success?  I think so.

As you may recall, my grandfather is on dialysis as well.  He is pushing 90 years old and been on dialysis for 10 years.  For the geriatric folks out there, I would consider him successful as well.  You know what he hates about dialysis?  Having severe arthritis and laying in a bed.  Not the dialysis itself!  Once he got the hang of fluid restrictions, his sessions go very smoothly.  No problems to report at all.  In fact, the last anomaly at one of his sessions was a machine malfunction; not him!  His health has remained stable during this time and he lives a good life.  He’s active (goes walking, attempts to dance), travels, goes out almost every day and bosses everyone around.  The day after dialysis, watch out!  Then again, he’s tough ol’ Russian stock…

I think there are many other "successful dialysis patients" than you assume.  Good luck and be well!

Hello UkrainianTracksuit,
Congratulations! Well done!
It is very impressive that you have achieved your PHD in no time at all and that now you are lecturing/researching ...
I send you all my good-luck-wishes,
Kristina.

[Rerun]

I still hate it so there.

                 

[UkrainianTracksuit]

Thanks kristina.  I completed it in the average span of 6 years.  As well, I'm adjunct faculty so contractual... no tenure yet.  But I am happy with part-time hours and part-time responsibilities.  I was lucky that right now, there is a demand for academics with an interest in murky business and unsavory groups.  Overall, my job suits my dialysis schedule well.  The fact I can work and my brain still putters is success enough!

[Deanne]

Many here have done things that are considered successful by society in general, but those who putter around the house are also success stories as long as they're happy more often than not.

[obsidianom]

Hello to all. I haven't been around as much lately due to various issues in my life and my wifes health.  But things are better now while still in a state of flux.
I am on both sides of all this as both dialysis caretaker for my wife and physician of 27 years now. I take care of a LOT of diabetics so I see all kinds of bad health behavior and damage there.
My wife is now over 3 years on Nxstage and our joke is THAT IF ALL HER MEDICAL ISSUES WERE AS EASY AS DIALYSIS WE WOULD BE HAPPY. Dialysis is the one aspect that is stable and runs like clockwork 5 days per week. Her fistula was repaired back in January and working well after 1 local idiot vascular surgeon  declared it dead and unusable. We went back out of state to our original surgeon who easily fixed it.
My wife is in a wheelchair now due to a brain tumor (benign) that is effecting her coordination. She is strong but cant coordinate her legs well enough to walk . She has progressed to be able to stand. I had to practically carry her for a few months and she was mentally gone for about a month where she hardly seemed like the same woman I have been with 35 years. Now with the steroids I pushed to get her on she is back to her normal mental state which is a BIG relief to me. I thought I lost her.
The tumor is inoperable at this point due to dialysis. The top neurosurgeon we saw out of state felt surgery and dialysis are a deadly mix for this type tumor.  So we will manage it with steroids which at least she tolerates well.  She is back to writing and happy . She is sitting now as I write this on her dialysis chair hooked up to the cycler and writing on her computer.   
So boys and girls there are things far worse then dialysis . Losing your body and mind with a brain tumor is definatly a BAD thing.  Ill take dialysis any day.
  My co doctor in the office left last week to work in the hospital . We shared
 the office for 9 years. Before that I was alone for 18 years , so now I am back to that. My wife still comes in to help in her wheelchair 2 to 3 days per week. I only work 3 mornings now anyway as I am semi retired.
Sometime when I feel up to it I will write about the saga of the "lung "  problem my wife had that led to 2 hospitalizations and home oxygen for 2 months. (that was REAL fun). Thankfully it is over and her lungs are fine now. It was scary.   
As I wrote earlier, DIALYSIS is easy compared to all else we have been through.

[Vt Big Rig]

obsidianon

God bless you and keep you Sir.

I am new to this journey but in the almost 90 days I have been on the machine I cannot say enough about my wife and care partner. We are both still working and we run in the evenings.  So now she does all her errands and most of mine. Connects me up, visits until pressures even out, gets some work done around the house, comes and checks on me, feeds me, and then takes me off and bandages me up. Not to mention keeping me even on those days when I get down about all this. We have been married 40 years now and even more now, I know I got lucky and made the right choice.

You and any care partner have a special reward waiting for you. I hope you know how much you all mean to us and how much you are appreciated.

[obsidianom]

obsidianon

God bless you and keep you Sir.

I am new to this journey but in the almost 90 days I have been on the machine I cannot say enough about my wife and care partner. We are both still working and we run in the evenings.  So now she does all her errands and most of mine. Connects me up, visits until pressures even out, gets some work done around the house, comes and checks on me, feeds me, and then takes me off and bandages me up. Not to mention keeping me even on those days when I get down about all this. We have been married 40 years now and even more now, I know I got lucky and made the right choice.

You and any care partner have a special reward waiting for you. I hope you know how much you all mean to us and how much you are appreciated.

Thank you.    But to all you on dialysis , You are the true heroes. 

[Athena]

Hello to all. I haven't been around as much lately due to various issues in my life and my wifes health.  But things are better now while still in a state of flux.
I am on both sides of all this as both dialysis caretaker for my wife and physician of 27 years now. I take care of a LOT of diabetics so I see all kinds of bad health behavior and damage there.
My wife is now over 3 years on Nxstage and our joke is THAT IF ALL HER MEDICAL ISSUES WERE AS EASY AS DIALYSIS WE WOULD BE HAPPY. Dialysis is the one aspect that is stable and runs like clockwork 5 days per week. Her fistula was repaired back in January and working well after 1 local idiot vascular surgeon  declared it dead and unusable. We went back out of state to our original surgeon who easily fixed it.
My wife is in a wheelchair now due to a brain tumor (benign) that is effecting her coordination. She is strong but cant coordinate her legs well enough to walk . She has progressed to be able to stand. I had to practically carry her for a few months and she was mentally gone for about a month where she hardly seemed like the same woman I have been with 35 years. Now with the steroids I pushed to get her on she is back to her normal mental state which is a BIG relief to me. I thought I lost her.
The tumor is inoperable at this point due to dialysis. The top neurosurgeon we saw out of state felt surgery and dialysis are a deadly mix for this type tumor.  So we will manage it with steroids which at least she tolerates well.  She is back to writing and happy . She is sitting now as I write this on her dialysis chair hooked up to the cycler and writing on her computer.   
So boys and girls there are things far worse then dialysis . Losing your body and mind with a brain tumor is definatly a BAD thing.  Ill take dialysis any day.
  My co doctor in the office left last week to work in the hospital . We shared
 the office for 9 years. Before that I was alone for 18 years , so now I am back to that. My wife still comes in to help in her wheelchair 2 to 3 days per week. I only work 3 mornings now anyway as I am semi retired.
Sometime when I feel up to it I will write about the saga of the "lung "  problem my wife had that led to 2 hospitalizations and home oxygen for 2 months. (that was REAL fun). Thankfully it is over and her lungs are fine now. It was scary.   
As I wrote earlier, DIALYSIS is easy compared to all else we have been through.

Dear Obsidianom
You are truly a towering hero and I feel so much better knowing that people like you actually exist in this world. Your wife sounds like a real battler herself and I wish her the best of luck. Please remember to also take good care of yourself. It's such a blessing to hear from you, as always.

[obsidianom]

Thanks to you Athena. Nice to see our Australia connection continues.   Keep up the good fight. !

[Athena]

Thank you so much Michael, Iolaire, Kristina, Moosemum, Noahvale & everyone else for your replies, they have really helped me to get my bearings in better order on this subject.

UkrainianTS, I must apologise to you for it would seem that my poor choice of words in my original post has created an unfavourable impression of people on D. I certainly did not mean to make anyone feel bad - Lord knows how easily the medical world seems to do this already to us. It's just that it's a rather torturous subject for me, as you can understand. The main reason for it being so difficult is that I have spent time in a renal ward earlier this year and regularly meet my endocrinologist in a dialysis & transplant dept of a hospital. I have seen so many very ill people in this time that I have become quite traumatised. So when I happened to come across someone on D who appears healthy and energetic - you can imagine how pleasantly surprised I was to witness this. Of course, I also know that there are many people on the IHD forum who are also coping very well on D and leading productive and fulfilling lives. But I simply wanted to report how I felt when I actually met someone in the real world. I don't really have much faith anymore in what Nephs tell me - I only trust what people who are living through D actually report about their experience and you have personally been of enormous help and support to me. Best wishes and sorry once again!

[Athena]

Many here have done things that are considered successful by society in general, but those who putter around the house are also success stories as long as they're happy more often than not.

Deanne, I wholeheartedly agree. The word 'successful' in my original post in relation to how well someone may be coping on dialysis is perhaps not the best choice of words. I don't know how doctors would put it when they compare patients but no doubt they wouldn't use 'successful' as such.

[Simon Dog]

Part of my definition of "successful" is being able to work while on D.   Not necessarily actually working, but either working or not-working/retired by choice rather than the orderal of the hose.

[kitkatz]

Working or not working should not be the rule by which a successful dialysis patient should be measured by.
What does success mean?  How is a dialysis patient successful? Is it longevity while on dialysis? Is it life happiness?
There is a questionnaire we all do for the social worker every year and they measure success by it.
There is also blood work that shows how successful a patient manages a difficult diet.
There is KT/V.
There are so many levels to this question it would take a long dissertation to discuss it all.

I do not think there is one answer for a successful dialysis patient.
I think everyone of us rates our own success based on our own life experiences.

[obsidianom]

Def: Sucessful dialysis patient ----------SIMPLE : ------Every dialysis patient is a success as you have to be ALIVE to be on dialysis. You beat the death curse of kidney disease. What you make of it after that is purely your own decision.  Every one of you is a SUCCESS. Every day you return for dialysis you WIN again. PERIOD. 

[Alex C.]

I consider myself to be "successful" as a dialysis patient; I'm stronger and healthier than I've been in YEARS. The only problem is that I am still a "patient", which makes the rest of my life a mess.