I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on March 28, 2015, 07:37:34 AM
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Hello,
I have been on hemo-dialysis at a dialysis-centre for just over 3½ months and as some of you might know, I struggled to keep my kidneys going for over 43 years and in total end-stage-kidney-failure for some eight years. I have always been known as a very patient person, very calm and thoughtful, but since being on dialysis by degrees I find myself now impatient, frustrated and despondent and what we call "a little short" with people, including myself and this is not my nature and I am not happy with this at all. Of course, this is not helped by the few physical problems I am currently enduring, but I do not feel I can blame my current mental state on those few physical problems because I have alwayshad to deal with the terrible physical effects of suffering from Mixed Connected Tissue Disease (MCTD). I feel there is something else causing me to feel as I do, and I am more and more certain it is to do with the dialysis-process itself which has some type of effect on my body. Because I suffer from Mixed Connected Tissue disease (MCTD)which in my case involves Systemic Lupus and multiple drug-intolerance plus photosensitivity, my body has never liked medications or any "unnatural additives" so to speak. It is because of MCTD, and my familiarity with past medical problems (stroke, cerebral haemorrhages etc.) associated with it, I feel that the dialysis-process (involving a dialyzer, Epo, bicarb,a clear liquid, the blood-thinning agent and the taking-off water plus the four hours of constant processing of my blood) is having an effect on my body causing me to feel impatient, frustrated and despondent and a little short with people, including myself, as well as causing the physical problems of hair loss, diarrhoea, nausea, constant tiredness etc. I am wondering if anyone has felt similarly and if so, does this go away in time and if not, how do they handle their situation?
Thank you from Kristina.
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I handle things by seeing a psychologist. Talking things out helps me.
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hello kristina....i to feel more grouchy and seem to fly off the handle quite easy these days. i thought its cuz i am stressed out with having
to do the treatments 4x a day but i wonder if its not something else. i am a pretty easy going and laid back kind of gal but anymore
its like i catch myself yelling and getting mad over stupid stuff. the weird thing though is i am not on hemo...i am on pd..and you say u
have diarrhea and so do i and i was thinking it was from the solution in my stomach but i am not sure...all i know is its very annoying.
its all just very strange that 2 different kinds of dialysis could be causing the same symptoms for us both.
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So many physical problems and heavy treatments for this, that or the other is bound to have an effect on our mental state. Also I was shocked to find out that under-dialysis had a scary effect on your mood (i only recently found out when skipping some sessions and nearly didn't want to go on the machine anymore, cos I didn't see the point of doing it).
So skinnacat maybe you want to look into APD (the cycler) , and Kristina I still think you might still be in some kind of shock, and maybe disappointed after 43 years 'winning' by staying off D, and the transplant taking longer than expected to happen.
jeannnea I'm glad you found a good psychologist, and that it helps.
Lots of love, and love, and strength to y'all, Cas
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Thank you very much for your kind thoughts jeannea, skinnacat and cassandra.
Thank you jeannea for sharing that you see a psychologist and I am very glad that it helps. I am not sure whether it could help me as well,
but I shall seriously look into it, if my situation does not improve and I thank you again for sharing.
Hello skinnakat, it is strange that on Pd you suffer from diarrhoea as well, whilst I suffer from the same symptoms being on hemo.
Could it be that our body-systems do not approve of all these new medication-chemicals "put into" our system
and each of our body-systems has to get over the shock of being on dialysis and needing all these new medications?
Thank you cassandra. You sum up the situation very logically and I thank you for it !
What you mention sounds like a very logical explanation and it could very well be, that my body and I are still in complete shock
about having started with dialysis, because for the past 43 years it almost looked as if there was a chance to see my life out without needing dialysis...
... and now all of a sudden I do need dialysis three times a week and my body struggles very much with all the necessary dialysis-medications
and the transplant-options also sound much more complicated and difficult than first anticipated...
Thanks again from Kristina.
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Kristina, I don't have any answers but I just wanted to let you know that I feel the same way and I am not on dialysis ... I really do believe that our mental state really does reflect what may be happening in the body. I don't see the two as divorced from each other like doctors and psychologists seem to regard it as. I think your intuition is correct that your mood has been affected by the chemical exposure that D has given you. My guess is that Nephrologists & renal nurses would be aware of this side effect of D & my hope is that they can do something about it. Have you tried raising this issue with your doctors?
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Kristina, I deal with dialysis one week at a time. Every Friday I feel a sense of closure that I don't have to go to dialysis any more this week. If I dwell on the never ending string of dialysis going into the future I get depressed. I know how bad dialysis is but I know that I have more things I want to accomplish in my life. So I try to balance the 18 hours I send on dialysis every week with the 150 hours I get each week that are non dialysis hours. As long as I can say I enjoy my non dialysis time I don't mind the dialysis time.
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Thank you Athena and Michael Murphy.
Hello Athina, I agree with you that our mental state is a direct reflection to what our body experiences in ESRF
and I shall ask the doctors about this a.s.a.p.
Our body and psyche are one combined unit and there is no separation and my body went through a terrible trauma
when I started with dialysis with many noted side-effects, which I am still in the proicess of sorting out.
If our body goes through a trauma, it is only logical that the same trauma affects sooner or later our mind as well.
Another point is the realisation that dialysis can influence our life-span (life-expectancy) and this realization
can have an impact on our thinking and future-plans.
Thank you Michael, for your inspiring thoughts.
I shall try to train myself and deal with dialysis one week at a time
without thinking about next week or the week after or the weeks before...
... and it is a good idea to search (and hopefully find) a balance between everything connected with dialysis
and the valuable time we have on non-dialysis days.
Thanks again from Kristina.
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I will describe myself on dialysis in one succinct word: "Bi**h"
It is hard on the body and the brain. I lived in a constant fog that clouded my brain and my mood was bad.
I started nocturnal dialysis and it helped a lot. The cloud dissipated a lot
However after sixteen years on dialysis I cannot remember words or names sometimes. It can be frustrating, but then I did teach sixth grade for fifteen years, that may have had something to do with it, too.
Dialysis is still hard on my body and brain and there are days when I go home from the center in tears and if things do not go right I end up in tears. My frustration level can be zero and I cannot put up with BS anymore. I will cry over stupid things at home. I have learned to let some things go.
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Thank you kitkatz.
Dialysis can be quite hard on my body as well and I have "only" been on dialysis for 3½ months ...
... I also have caught myself forgetting names or words sometimes ...
... and in a strange way dialysis points out very strongly our true basic priorities in life ...
Thanks again from Kristina.
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I think everyone goes through various stages when they start dialysis ... shock, denial, anger. depression, thirst for knowledge and a slow acceptance...
I guess we don't all have them in the same order or for the same length of time ... but we still have to wade our way through these emotions.
I can remember being very angry for quite a while ... unable to deal with my situation. As a single mum with 4 children (3 at home) and no help from the state it
was hard to carry on and not feel very very angry with the world in general. I felt "abandoned" and "unlucky" and it takes awhile to work through these various emotions...
and I think necessary too, to process what is'has happened to you...
I still have days/nights when I am really angry about my lack of kidney function/failed transplants and all the other stuff going wrong...
I just want a dialysis free period of time like every other normal person...
But I think that anger does have a purpose ... it keeps you fighting :boxing; :boxing; :boxing; it can have a positive side.
Anger stops you giving in...
Be gentle with yourself it's a very bitter pill to swallow (especially three times a week, every week... :cuddle;
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Thanks Sugar, it is so good to know about these various stages...
and I can well imagine how "abandoned" and unlucky you must have felt after going through such terrible disasters,
especially because you had no help from the state in such a very difficult situation and there were no services to assist you ...
... When I was left on my own to deal with my difficult health-situation, I was later told that I just "fell through the net"
and I dare-say that you also just "fell through the net". Sometimes I wonder who the people are who do not "fall through the net" ?
Do they have better connections or better contacts to receive services when they are at their most vulnerable ?
Or do they know someone "important" who "puts things into gear" and assists them not to "fall through the net" ?
....I am currently going through some disappointments myself and I wonder if there is anything I could have done better,
but nothing comes to mind.
... I also wonder how to get this "transplant-machinery" moving forward in an easier constructive and better understandable way,
because at the moment it is becoming difficult to see who exactly is the "captain of this transplant-ship"...
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Sometimes it is a bit like a ghost ship, appearing on the horizon and then disappearing.
You should get to see a transplant surgeon to discuss going on the list/having a transplant and they usually do various medical stuff at this point.
Ours meant an ECG, blood tests, chest x-ray and a stress ECG (where you have to walk briskly for 20 minutes on a treadmill) ... all to prove you are fit enough for the op.
Different doctors vary on their requirement. particularly in relation to weight and fitness...
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Thank you Sugar,
"Things" are very slowly moving forward...
... I had my Echocardiogram and now I am waiting for some more tests to be done ...
... It just comes over sometimes as a waiting game and is a bit trying ...
... just as you say: "a bit like a ghost-ship, appearing on the horizon and then disappearing" ...
Thanks again from Kristina. :grouphug;
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@ Kristina If you get a good. working transplant in the end, worth all that waiting and medical stuff in the long run 8)
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Thank you Sugar for your understanding.
...I know I have to be patient, but my waiting appears sometimes almost as if it is getting nowhere...
and my fear is that I might "pick up something" during a dialysis-session whilst waiting for the transplant
and this "having picked something" might lenghten my waiting-time to become even longer ...
... But I am sure this is a perfectly normal emotion whilst waiting and hoping...
Thanks again from Kristina. :grouphug;
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It is ... I can remember jumping every time the phone rang unexpectedly ... but was never "that call"
After awhile you just forget about it...then one day, two years on, was halfway out of the door to go for a dogwalk and the phone rang...
and i had a kidney waiting for me!!! I was in a state of shock!!! Sadly for me it only lasted 3 months but they do have a 90% success rate so fingers crossed
for you :pray;