I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on July 23, 2014, 01:12:22 AM
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The protocol for transplant includes a pre-transplant coronary angiogram for the examination of blood vessels to the heart
which I am told is standard procedure to make sure there is no narrowing of the vessels or heart disease that may need treatment before a transplant.
I remember reading that someone had this procedure which uses a special dye and their remaining kidney function deteriorated instantly because of the dye
and they had to be put on dialysis straight away.
... My question is: was that bad luck or does it happen more often that the dye always acts to destroy the remaining kidney function in ESRF?
I have also heard that the latest dye used is very much more safe for the patient and the remaining kidney function. How true is that?
I also have been told that because my kidney function is so low at around 6% that it most likely would be necessary to have two weeks of dialysis prior to the transplant
in order that my blood is brought into a much better condition...
I wonder if the two weeks of dialysis might weaken me and this might nullify the benefit of more healthy blood just before a transplant?
Thank you from Kristina.
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After a accident in 2012 I was scheduled for rotor cuff surgery. I was told that prior to the surgery I had to have a angiogram. At the time I was just at the cusp of needing dialysis. They checked my kidney function before and after the angioplasty. No change. However due to my kidney problems the heart doctor used only 20 cc of contrast dye. 5 years ago the same surgeon went uh oh when he first saw the X-ray of my heart. Not a good feeling to hear when you are laying awake for the procedure. However after the doctor was done he was running around showing everyone the final X-ray like he won the Super Bowl. We'll after the last angioplasty he did the same thing only this time he was running around showing what he got with 20 cc of contrast.
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Thank you Michael.
Very interesting! I am glad that the contrast dye did not influence your kidney function.
Since you were given 20 cc (looks like a lot) because of your kidney problems,
I wonder whether you, or anyone else would know what the normal amount (cc) would be?
P.S. I believe one's body-weight is also brought into the calculation of the amount of contrast dye given.
I weigh between 55.5 kg and 56 kg. Would you weigh more or less? I am just trying to get an idea of proportion...
Thanks again from Kristina.
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I had one angioplasty and one angiogram while I was on dialysis. Both times, I was scheduled for dialysis immediately after the procedure. With the angiogram, because there was time (the angioplasty was emergency), I also got a bicarb IV ahead of time to protect the kidneys.
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Many thanks cattlekid.
The bicarb IV is very interesting and I shall ask the nephrologist about this.
Maybe bicarb IV is a good idea in combination with the lower amount of contrast dye as mentioned by Michael
and perhaps that may be a help to preserve the little kidney function I have left ...
Thanks again from Kristina.
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Kristina, this is something that definately needs to be discussed with your doctor before the procedure. I believe you are on dialysis now? Whenever I have had a procedure involving dye, I have had to dialyze straight after. I always make a point of checking what contrast they are using, to make sure that it isn't gadolinium, since this can cause nephrogenic systemic fibrosis in those with CKD/ESRD.
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Hello Amanda,
Thanks for the information about gadolinium, I shall ask the medical team about that...
... I am not on dialysis yet and try very hard to keep my "two little fighters" functioning for as long as possible,
whilst getting evaluated for a transplant.
Fortunately I have no ESRF-symptoms yet (touch wood...) no swelling of my ankles and no other ESRF-symptoms.
... My appetite is still normal and I still keep strictly to my vegetarian ESRF-friendly diet... I still go for my daily walks
and drink little less than 2 litres of (filtered) water every day...
Thanks again from Kristina.
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I've had several episodes with dye. Also times when they chose not to use it. Different Dr's different circumstances. The last time was like you, for a workup for transplant. The Dr ( no longer my Dr) sxeheduled it with dye. I mentioned my concern and she said my kidney function was so low it didn't matter. As I said, I am no longer with that Dr.
They didn't do a comparative before and after, so I don't know if there was any harm. At the same time though my kidney function was plummeting.
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Thanks Speedy.
I am so sorry about your experience with this doctor... and her poor attitude...
... some people just have no idea how hard we try to keep our kidneys functioning...
... no kidney function is ever too low and kidney function should always be respected... even if it is very low...
Thanks for your information, Kristina.
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That dye is what put me on dialysis. I was having a heart attack and needed it done ASAP so there wasn't much time to think. My kidneys were weakened years earlier due to chemotheropy (cysplatinum I think). The dye took them down to 8% from the 20% or so they were holding at for years. That was April 2013. My kidneys are still functioning though and I only do to short manual exchanges (CAPD) per day and don't need to remove any fluid. My anemia has improved as well, almost to what it was before. I would like to keep this function as long as possible and am scared about having to have that process done again but so far so good!
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Hello marlinfhsr and thanks for your reply.
It sure is difficult to keep our little kidney function going. Thanks for pointing out the problem with the contrast liquid
and I am very sorry that it has put you on dialysis. I suppose we all react slightly differently,
but nevertheless it is a concern, what effect it may have on our remaining kidney function.
Someone may correct me if I am wrong but I believe Iodine is one of the main components of a particular type of contrast liquid
used for angiogram etc., and it is the Iodine which gets into the glomeruli and may have some level of detrimental effect.
Thanks again from Kristina.
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Now that I am on dialysis I treasure the kidney function I have left. I know how lucky that small amount of function makes me. While I need dialysis for getting creatine out of my blood the two little darlings are sill eliminating all the water I drink. Plus while I try to follow a renal diet I still have pizza once a week and I don't have to take binders. If a doctor suggested to me my remaining function was not important I don't know what I would do. At the very least I would point out what kind of a incompetent boob he/she was. I am not looking forward to my kidneys shutting down and I don't need a quack to hurry the day.
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I agree with you, Michael and I do hope your "two little darlings" keep going
and let you enjoy your weekly treat for a very long time to come...
... I noticed that some people, even doctors did not understand why I am fighting with such a determination
to keep my "two little fighters" functioning for as long as possible...
... but there again... healthy people often don't even realize how lucky they are to be without any health problems...
Kind regards from Kristina.
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I wont let anyone use dye on my wife. No fistulagrams etc. I want to protect her remaining kidney function. Dialysis is easier on the body when there is still residual function. I am tired of doctors doing tests all the time "just to check' . Too much dye and too many worthless tests are done.
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Thank you obsidianom.
I fully appreciate and share your reservations concerning the use of a contrast dye, but if the protocol of the “transplant team” is,
that patients should undergo an angiogram to establish whether their heart, surrounding arteries and veins are healthy enough
to withstand the serious operation of a transplant, would you still refuse such an angiogram with contrast dye?
This is a very important question because I too do not like the idea of a contrast liquid causing further possible problems for my small kidney function.
Thanks again from Kristina.
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Kristina which transplant team are you under? I didn't have an angiogram for my tx workup, all i had was ecg, blood tests and the ct scans oh and chest x-ray. My dad was the same and he was the donor, but he did have a heart attack a yer later but us fine now. I asked whether the angiogram should be done for donors they said they dont do them for anyone unless showing signs of heart disease such as high blood pressure and high cholestrol as they are so expensive, but as he was over 65 perhaps they should have. But he has had a heart bypass now and is healthy and his kidney is fine, he obviously had the angiogram when he had the heart attack and they warned him about the dye as he only had the one kidney now but obviously that kidney is normal. Do they absolutely have to do it? I dont know if i didnt have it because i was 30, but then hey this kidney could last 20 yrs then i have a heart attack u know? I did ask my kidney specialsts about a test for me when dad had the heart attack in case it was genetic and they looked at me in horror and said they would never risk the tx (and particularly a well functioning one) on an off chance that it might be genetic and i might have issues later and told me to avoid the dye. They said i have normal bp and cholestrol so it would be daft to do it, obviously i dont know your personal medical situation but an angiogram was not protcol at my centre in the uk, or not for me. Unless it is when u reach a certain age but i dont know your age. Tbh I agree with Obsidianom, be protective about what function u have left as the doctors wont be especially at your stage, i found this, to me it was a big deal if i had to dialyze before dad was approved to donate, to them it was like whatever it will happen anyway you know? Fortunately it didnt, and a few doctors luckily agreed and pushed the tx forward as they wanted it pre-emptive. I have also found throughout this journey, you need to be pro-active and take responsibility (wrongly in my opinion!) for your own care. In reality how long do they expect u to be off dialysis for, could it wait til then if it has to be done? Bear in mind they told me id be on it in weks and 9mths later i still had the same gfr and felt fine no symptoms like you, in fact the morning of the transplant i asked where the toilet was and a doctor told me they're for patients not visitors, um im having a tx in 2 hrs i am the patient!! I would talk to them, express your concerns and try and reach a compromise if it hs to be done, like less dye. xxx
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Hello Iainiepop
Thanks for your in depths reply, you have had a quite an extraordinary journey yourself
and I am very glad you are doing so well.
I take all your points on board and tread a careful path as best as I can.
I had quite a complicated health history, having first experienced complete renal failure (with uraemia and coma) in 1971,
but fortunately I got through this to slowly recover my kidney function, which, after some years, settled at around 40%,
and from this time until now I suffered two cerebral haemorrhages and much later a stroke
and once again I came through these catastrophies with only very slight legacies.
I also have suffered all my life with inherited Systemic Lupus Erythematosus (SLE), which was in 2003 upgraded to added Mixed Connective Tissue Disease (MCTD) and other diseases like Vasculitis, Sjoegren's, Sicca, Antiphospholipid Syndrome, Hypertension etc.
I mention all this because there may be a genuine reason for the suggestion I have an angiogram...
But, I shall definitely argue my corner, because I am very, very protective of my “two little fighters”
which are still functioning alright, even though they are feeling very poorly...
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Now that I am on dialysis I treasure the kidney function I have left. I know how lucky that small amount of function makes me. While I need dialysis for getting creatine out of my blood the two little darlings are sill eliminating all the water I drink. Plus while I try to follow a renal diet I still have pizza once a week and I don't have to take binders. If a doctor suggested to me my remaining function was not important I don't know what I would do. At the very least I would point out what kind of a incompetent boob he/she was. I am not looking forward to my kidneys shutting down and I don't need a quack to hurry the day.
I feel just like you. :boxing;
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Ok kristina i can ses why they might want to do it, but i hope they do it in a way which will preserve your kidney function. I totally understand u wanting to hang on to the function as i was and would be the same, unfortunately dont think doctors get that :(
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Thank you Iainiepop.
It is a hazardous and complicated journey for us all, I think
and I do appreciate your thoughts.
Best wishes and thanks again from Kristina.
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I recently had an angiogram.
I was told their are two strengths of dye depending on kidney function (they used the lowest one for me)
I also had dialysis immediately after but
I was allergic to the dye!! Very itchy rash appeared within 24 hours that really drove me crazy for a week!And a raised temperature on and off...
Apparently an allergic reaction is quite common!
I wouldn't have another unless it was a life or death situation. :secret;
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Thanks sugarlump.
I shall ask the nephrologist, how important an angiogram is for me and
I shall tell him, that I really need to be convinced, because I suffer ever so easily from all sorts of allergies myself.
No point in risking so much at such a late stage, when I have done so well so far...
Thanks a lot for pointing this out to me.
Kind regards from Kristina.
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My husband needed to have his fistula repaired a few months back and was given the option to have it patched (taking a vein from his groin to do so)
or dye & stent, he opted for the patching so they didnt need to use dye as the surgeon said it may be detrimental to his remaining kidney function, (8-9%)
Anyway, the patch failed and a month later they stented it anyway! He is currently at 7%, and still denying he needs dialysis...he does have times of the day that he vomits,
and a few days where he feels very very bad, he is sleeping lots (day) and needing sleeping tablets at night for a decent sleep...
He has lost interest in doing muh for me at home...even the dishes!!!
He has had angiograms in the past....and 5 years ago had a 5 way heart by-pass, he was probably at about 20% functron then, but he felt loads better and went back to work...for a time.
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Thank you for your kind message LisaBart.
I am very sorry for the experiences your husband has gone through and I don’t blame him for his reservations ...
...Like your husband, I have gone through some good medical experiences (which accounts for the fact that I am still alive...)
and some extremely bad medical experiences (which have damaged and badly hurt me on more than one occasion
with two cerebral haemorrhages, chronic osteomyelitis: my foot was saved at the last minute..., a severe stroke and end stage kidney failure ...)
...and because of these experiences, I naturally fear dialysis and/or transplant. Not because of the procedures as such,
but because there are medics, who couldn’t care less and don’t seem to be bothered whether a patient lives or dies...
... and as a result of this attitude, not enough medical care is taken...
Once a patient becomes aware of these facts, reservations about medical procedures are being developed and very hard “to get rid off”...
...and some doctors are fully aware of these reservations ... and that gives some of them an enormous feeling of power
and unfortunately it “goes to their head sometimes”...and as a result, the patient may be given a chance... or they may not be given a chance...
... Another problem is, that it is very hard for some vulnerable patients, who have been badly hurt, to locate a doctor who is actually prepared to listen to the patient
and take into account the patient’s medical allergies and intolerances to many medications...and that again can make survival a bit tricky...
I do understand your husband’s reservation and I do hope, the two of you can locate trustable medics for his treatment...
... to receive proper medical care for your husband from then on ...
Good luck and best wishes from Kristina.
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You have had a terrible time :(
I wasn't impressed with previous nephrologist (1.5 hrs away) here and was pleased to be moved on to the local renal unit nephrologists,
a lovely team of three, all have their different opinions but none are pushy and all ask questions and also listen. The nursing team are also lovely and we have all made friends over the
past year...the nurses rub their hands together when husband comes to his appointments and ask if he is now ready to join them...they joke with him to put him at ease...
at Christmas time I dropped them in a big xmas flower arrangement for their kindness...
I hope you find someone as lovely to deal with.
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Thank you LisaBart.
I am very glad that your husband has found a reliable medical team
who are kind, understanding and assist him to be more at ease...
... Hopefully I am also on my way, because have recently started to consult a nephrologist,
who appears to be listening, thinking and above all: he appears to be very professional ...
... which makes me feel a little bit more at ease...
(I just hope it's not too good to be true...)
...and I do hope very much, that he keeps like that and is "not going off" after a while
as so many nephrologists, I have consulted in the past, have done...
Thanks again from Kristina.
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LisaBart, With such a low percentage of kidney function, I wonder what your husband's potassium levels are running at. It is not just the physical symptoms that are an issue, but if this is very high, he could be risking heart attack. Why is he holding out so much against dialysis? He doesn't sound as if he is suffering and he would feel better doing dialysis, particularly a home modality (PD or home hemo.). By holding out this way, he is risking emergency dialysis. Does he even have an access yet so he is ready to start?
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My husband needed to have his fistula repaired a few months back and was given the option to have it patched (taking a vein from his groin to do so)
or dye & stent, he opted for the patching so they didnt need to use dye as the surgeon said it may be detrimental to his remaining kidney function, (8-9%)
Anyway, the patch failed and a month later they stented it anyway! He is currently at 7%, and still denying he needs dialysis...he does have times of the day that he vomits,
and a few days where he feels very very bad, he is sleeping lots (day) and needing sleeping tablets at night for a decent sleep...
He has lost interest in doing muh for me at home...even the dishes!!!
He has had angiograms in the past....and 5 years ago had a 5 way heart by-pass, he was probably at about 20% functron then, but he felt loads better and went back to work...for a time.
I would expect anyone with a function of less than 10% would feel better on dialysis, even twice a week for 3 hours minimal dialysis.
Acute tiredness and sleepiness and vomiting are all poor kidney function signs.
What is his hb? That would be very telling.
Because poor kidney function affects the bone marrow eventually and the body's ability to make red blood cells. Red blood cells = oxygen = energy.
Tell your husband the prospect of dialysis is worse than the treatment. :cuddle;
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LisaBart, With such a low percentage of kidney function, I wonder what your husband's potassium levels are running at. It is not just the physical symptoms that are an issue, but if this is very high, he could be risking heart attack. Why is he holding out so much against dialysis? He doesn't sound as if he is suffering and he would feel better doing dialysis, particularly a home modality (PD or home hemo.). By holding out this way, he is risking emergency dialysis. Does he even have an access yet so he is ready to start?
"I would expect anyone with a function of less than 10% would feel better on dialysis, even twice a week for 3 hours minimal dialysis.
Acute tiredness and sleepiness and vomiting are all poor kidney function signs.
What is his hb? That would be very telling.
Because poor kidney function affects the bone marrow eventually and the body's ability to make red blood cells. Red blood cells = oxygen = energy.
Tell your husband the prospect of dialysis is worse than the treatment. :cuddle;"
He is holding out because his original nephrologist has told him to stay off dialysis until he feels he needs to start! Plus he is still in denial!Says it won't do any other organs anymore damage!
In saying that we do keep a check on potassium etc...if anything he has had low potassium at times and yes he has been a little aneamic but also keeping an eye on that.
Clinic have a "hotline" if I have a problem I call them, we are 5 minutes away from a hospital. Yes fistula all ready to use.
I tell him he will feel better on dialysis, and so do the nurses.
Its awesome that I can come here and hear your opinions from what you have been through and relate to whats happening here..thank you :)
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Hello again LisaBart,
I am very glad that your clinic gave you the number of their “hotline” to call, if there is a problem
and it is re-assuring, that you are only 5 minutes away from the clinic.
I wish you both good luck and hopefully things are getting sorted out soon.
Best wishes from Kristina.
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I feel for your husband I to tried to delay dialysis for as long as possible. For two years my nephrologist tried to convince me it was time to start dialysis. But I was waiting for the symptoms to show up. I wasn't feeling great but I thought I was okay. I wasn't a complete boob I had a fistula created in my arm, but until I saw a sign I wasn't willing to commit to the major change in life that is dialysis. One day in work I began to feel nauseous and had to end up in the men's room worshiping the porcelain god. That did it I started dialysis the next week. It was one of the most difficult periods of my life. Not because of dialysis but because of the fear of the unknown. The closest I can come to explaining how I felt is I felt the same as I did when I was five going to kindergarten for the first time. I survived kindergarten. And I survive in dialysis. Dialysis is many things , long boring, some times difficult, and rarely pleasant, but it is also life. I feel much better on non dialysis days then I did before. I am looking forward to a long enjoyable life. Dialysis has it's challenges just read this web site, but it has it's rewards too. You get to meet a group of people who understand what you are going through. And you are not alone family, friends, and other patients are there for you. Select a good center go visit and show your husband what is in his future, the fear of the unknown is much worse than the reality.
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Well said Michael :clap;
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Thanks Michael. It's people like you...a working man ( and everyone else of course) he needs to chat with, but he puts his head under the covers!!
I know it's the fear of the unknown, but I think when he starts he will just take it in his stride. I can only say so much, he has to choose his own time.
We only have one local clinic and the next is 2 hours away...and until recently you had to travel if the other was full....
I have to get on with my life and it would be easier if he would take the step and have the dialysis so I am not feeling like I have to be here
constantly. 2 weelks til next neph vivit so will see what thy have to say :)
Thanks for your input.....appreciate it.
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LisaBart,
Your husband's may not be able to admit that his fear of dialysis is greater than his sickness. Which puts his life at serious risk.
I am/was deathly afraid of even the thought of hemo dialysis but my Mother was on PD her last few years before passing from an un-treated heart. She was deathly afraid of by-pass surgury having lost a sister-in-law to complications of by=pass surgery, so she simply refused to deal with it. And it did take her.
I went on PD and I am no longer sick. In fact, I am better now than I have been for a great number of years. Dialysis has made a significant improvement in my quality of life.
You need to set your husband down and show him this posting.
Have a serious talk about his fears, see if he is willing to face his fears, improve his health, and extend his lifetime so you two can remain together longer.
I know that someday PD will begin to fail and I will have to begin hemo, and I will accept that, when it becomes necessary.
I have a G'son that I am not willing to lose, I will do anything that I have to to keep my health so that I can stay here longer.
Once your Husband begins to understand these then maybe he will begin to accept his illness and the treatment he needs. He isn't really ready to die yet, he just needs you to help him figure that out.
I only hope he does quickly, as it is getting very late.
Take Care,
Charlie B
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Thanks CharlieB53,
Seriously there is no way he will sit down and read anything on this site, he won't even read anything he is handed by the nurses...
Same when he had his bypass surgery, he refused to listen to them and just said tell my wife and just do it.
Sadly I am only here as his carer now, my life has been on hold for 4 years its been 10 years since he was diagnosed
the first 6 I was seriously concerned.....many would say more fool me, but I am not one to walk out when someone is in need.
I am beginning to wonder if he's just trying to keep me here by not trying to become better by having dialysis?? Sorry, this kinda turned into a vent!!
I can only advise him, offer other peoples advise and let him be the decider. He actually hasn't vomited the past couple of days, which is a good sign, but he also has
not been up and about much doing anything, though, its been terribly wet & wild weather......... :banghead; :banghead; this is me!!
He's gone back off to bed watching a movie and I refuse to stay indoors today....I am off out for a birthday lunch with my best friend and confidante.
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I am very sorry LisaBart what you and your husband go through and I can understand your husband’s attitude ...
...He might need a little more time to come to terms with this new situation of needing dialysis.
Like myself over the past 43 years, your husband might also have tried very much over the years,
to keep his kidneys functioning longer or to find ways how to avoid dialysis for as long as possible ...
...and there is also the aspect of getting a little tired sometimes, not only from the situation of end stage kidney failure,
but also from trying so hard and so much for so long... Pease give him a little more time...
and I am sure he comes around to agree with you and the nephrologist...
Best wishes to you both and good luck from Kristina.
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Thanks CharlieB53,
Seriously there is no way he will sit down and read anything on this site, he won't even read anything he is handed by the nurses...
Same when he had his bypass surgery, he refused to listen to them and just said tell my wife and just do it.
Sadly I am only here as his carer now, my life has been on hold for 4 years its been 10 years since he was diagnosed
the first 6 I was seriously concerned.....many would say more fool me, but I am not one to walk out when someone is in need.
I am beginning to wonder if he's just trying to keep me here by not trying to become better by having dialysis?? Sorry, this kinda turned into a vent!!
I can only advise him, offer other peoples advise and let him be the decider. He actually hasn't vomited the past couple of days, which is a good sign, but he also has
not been up and about much doing anything, though, its been terribly wet & wild weather......... :banghead; :banghead; this is me!!
He's gone back off to bed watching a movie and I refuse to stay indoors today....I am off out for a birthday lunch with my best friend and confidante.
Big hug from me :cuddle;
Even if he doesn't admit it, I am sure he needs you more than ever now.
I wish you strength and peace. Take care of yourself as well.
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I had a heart attack followed by angioplasty and six stents, a complete rotor cuff tear, (lost complete use of my right arm for 6 months)and finally kidney failure.
Each of these events made me feel less, i lost the feeling of invincibility that every male is born with (why else would teen age boys do what they do).
Now I needed help and I needed to make changes not cause I wanted to but because I had to . Your husband is only going to put this off so long. Eventually he will end up in a hospital and he will start dialysis then. He won't have many choices at that point. He needs to make decisions that will set his life for the rest of the time he has. Hemo, pd, home hemo, these are serous choices and I have found the more I control what happens to me the better I feel about the whole process . Now I avoided dialysis for 2 years after my nephrologist wanted me to start. However I had my fistula created when my doctor said it was time. But for two years I deluded my self that I would never really start dialysis. De Nile is more than a river in Egypt. I suffered no ill effects from this personal delusion but as you can tell I finally had to admit to my self it was time. Since then I cope by doing what I can do for my self, your husband has been dealt a bad hand as have a of dialysis patients have. What I found amazing was how much my fellow inmates at the dialysis center enjoy their lives and strangely the companionship of others who are in the center.
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Hello Michael,
you certainly have gone through very rough times yourself
and I thank you for your sensible and very kind understanding.
I am going through similar stages myself at the moment and it helps to read
your honest account of what you have already gone through.
Thanks from Kristina.
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Sometimes we reach a point in our lives when we are faced with mountains and we feel as if we cannot deal with the climb.
Our fear of the unknown stymies us.
But you know, we are very resilient as human beings and it is amazing what you can cope with when you have to.
When I look back and remember all the mountains and hurdles I have climbed in the last ten years, with kidney failure, dialysis, failed transplants, line failure,
hospital superbug infection, heart problems, heart attack and an angiogram so far ... I realise (when I thought I couldn't cope at the start with any of it)
how strong I really am...
Don't sell yourself short :boxing; we're tougher than we look!
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Thank you Sugarlump,
you are right, we are much tougher than we look...
... and every mountain/hurdle is a challenge, that has to be approached and climbed individually...
... our good luck is, that some mountains are not that difficult to climb ...
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I think you are all amazing !!!
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I think you are all amazing !!!
Just human :beer1;
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Many sound super human !!