I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on July 11, 2017, 07:48:19 AM
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Because of enormous mounting unresolved problems that I have (mainly other medical problems & the terror of having to deal with numerous medical specialists), I asked my original Neph for some sort of psychological support or counselor for overall support. He told me that if I was a palliative care patient (defined as a patient declining dialysis) he could get someone to work with me. Without thinking too much about it (as we were discussing my other pressing medical challenges), I just confirmed that I will be declining dialysis if/when it comes up in the future. He then told me, he'll have someone call me.
I am now wondering what the implications are of this? I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital. Can anyone offer any advice as to what sort of treatment a palliative care patient would receive? To me it sounded like there would finally be some real support for all the problems I am having to cope with right now ... But I really don't know who or what I will be getting into.
Can anyone please advise me what I may now be in for?
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I'm in Palliative care. Basically, I wanted the path mowed to Hospice if and when my accesses failed or I get cancer and want to end my life by declining dialysis. I didn't want that situation to occur and THEN have to find people and sign papers and God knows what. So I'm in palliative care. The papers are signed and the information given. I have a lady from Hospice call me about every six weeks to see how I"m doing. I have the phone number to call if something happens and I'm ready to throw in the towel.
Face it... we live 3 days at a time. For the week I have my last minute of dialysis at 3 am Friday morning. By Sunday night I'm ready to go get cleaned again. I'm tired, I can't keep my eyes open and I feel bloated etc.
I'm not sure in England.... how this works. In the US, I'm in charge.
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Hi Athena!
Where do you live? If it is in the U.S., Rerun is right. You can decide at any time to do palliative care or hospice. Even in the States, palliative care means different things, so I would ask to speak to a social worker about it. Having worked in hospice in South Carolina, palliative and hospice are generally the same thing when you are at home. In the hospital, there are different sets of teams to help you.
No matter where you live, you should be able to find a counselor or psychologist to help you out. Even a social worker licensed to do private practice can help. I understand that in England, you have to go through the NHS and you can have quite a waiting period to receive help (someone correct me if I am wrong). In the U.S., you can go to your local mental health office. In South Carolina, it is through Department of Health and Human Services. You can also get a referral from any physician.
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I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital.
If I were distrustful of a hospital, or Dr, I would have to find another. Even if it meant having to travel a distance, rather than risk my health, and especially my life, to a place that I could not trust.
Opting out of treatment is always your option, but opting out rather than going to a different Dr or facility may not need be your only option.
This can be a very tough decision, either way.
If you ever want to 'talk' you can send me a PM. I would be more than willing to listen.
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Because of enormous mounting unresolved problems that I have (mainly other medical problems & the terror of having to deal with numerous medical specialists), I asked my original Neph for some sort of psychological support or counselor for overall support. He told me that if I was a palliative care patient (defined as a patient declining dialysis) he could get someone to work with me. Without thinking too much about it (as we were discussing my other pressing medical challenges), I just confirmed that I will be declining dialysis if/when it comes up in the future. He then told me, he'll have someone call me.
I am now wondering what the implications are of this? I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital. Can anyone offer any advice as to what sort of treatment a palliative care patient would receive? To me it sounded like there would finally be some real support for all the problems I am having to cope with right now ... But I really don't know who or what I will be getting.
Can anyone please advise me what I may now be in for?
Dear Athina,
Your story sounds very similar to my own. Like yourself, I was fighting day after day to stay pre-dialysis for as long as possible and like yourself, I became completely traumatized when meeting too many incompetent doctors and incompetent consultants. I tried in vain to receive proper health care year after year, without any positive outcome. Adding insult to injury, my end-state-kidney-failure was not even diagnosed for a long time, despite the fact that a (supposed competent) NHS-nephrologist-consultant watched my kidney-function slowly go downhill year after year, without ever mentioning a word to me or to my husband. He always told us that my (as I found out later) typical ESRF-symptoms were "a figment of my imagination".
My husband and I found out much later, just by chance, that "the ladies were not quite his cup of tea" and because of that he did as much damage as he possibly could...
I was only diagnosed with ESRF when my husband and I consulted with a private nephrologist who, at out first meeting, told my husband to bring me straight to an Accident and Emergency Hospital. I was dying because "my" ESRF was severely poisoning my whole body.
I then had to decide on the spot what to do and I finally allowed my husband to bring me to an A&E Hospital outside our district, in an effort to try and start anew. We then made sure that I had nothing to do any longer with all the former hospitals and incompetent NHS-doctors who traumatized me so severely and I then decided, with the help of my husband, to try and start anew again and that is how it still is. I have finally met a very helpful new NHS-nephrologist and a new, very helpful new NHS-family-doctor and they are both very approachable (and, believe it or not, they also appear to have a caring attitude). I also get on well with the dialysis nurses who attend to my medical care and I have also noticed, that since starting dialysis, I have been able to continue with my life surprisingly well. I have made a few interesting intellectual discoveries and also have been able to solve certain intellectual matters, which have been on my mind for some years. I also have continued to play the piano and I am finally able to read the score and play straight from the score. That was my dream for years and unfortunately was not possible whilst I was still pre-dialysis.
Just imagine: if I would have decided to stop it all and avoid dialysis-treatments, I would not have been able to give myself a fair chance and discover such wonderful results.
Being pre-dialysis “the real thing” of dialysis-treatment feels like something completely unapproachable and I know how hard you have tried to stay pre-dialysis for as long as possible.
But please reconsider now and give yourself a fair chance and try dialysis. Just give yourself a chance to try it out. You might be as pleasantly surprised about dialysis as I was. I remember when the new nephrologist told me at our first meeting, that he has there a "lovely little" dialysis-machine waiting for me ... I remember how totally horrified I was, in fact I even remember how my hair was standing up in horror and when he noticed my complete horror, he hastened to tell me that "we" still have to wait a little for that event, because "we" still have to arrange "things" beforehand like my tesio-access etc.
Anyway, here I am, waiting now patiently for "my" kidney-transplant to come along and I am asking you to please re-consider and please give yourself a fair chance and please give dialysis a try.
Good luck and best wishes from Kristina. :grouphug;
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A couple of 'bad' experiences with a particular Dr or facility can leave terribly deep mental scars that will effect future judgement and decisions.
Second opinions from a totally unrelated source can help one to make a far better informed decision.
Although many of us here at IHD have never met we have formed a bond, much like a Family, and we care deeply for one-another. The thought of one of our own being mistreated sets my remaining teeth on edge and seriously raises my blood pressure. The whole purpose of these forums are to SHARE information that the Dr's fail to tells us. Knowledge is critical to making informed decisions, no matter what the subject, and in health care, knkowledge is critical.
If you are having a problem many of us would very gladly offer our opinion in hopes that yopu would make better choices in your treatment and extend your time with Family and Friends.
We are ALL Terminal. We know this, but we Live with it. Making the informed decisions we do to keep a better quality of the remaining life time we have.
If you cannot, or are afraid to open up in public then Please feel free to send a PM. No one will spill any confidential information without your approval. But we do care for you and will try to help you in any manner you will allow.
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Athena you are facing the decision every dialysis patient must make every dialysis day. To go or not to go. This is a very personal decision. During last fall I suffered a major heart attack. I was unable to walk the 8 feet from my hospital bed to the toilet. To put it mildly I was depressed. Then I remembered I was a dialysis patient and if my life became intolerable I would stop dialysis and check out. My condition improved but the 19th of every month I decide if I will go to dialysis for the next month. So good luck with whatever choice you make. This choice is one of the few real benefits of dialysis.
sp mod Cas
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I deeply distrust anything to do with the hospital where my Neph works due to personal trauma & the trauma of family members in the past from this hospital so I would deeply distrust anyone calling me from this hospital.
If I were distrustful of a hospital, or Dr, I would have to find another. Even if it meant having to travel a distance, rather than risk my health, and especially my life, to a place that I could not trust.
Opting out of treatment is always your option, but opting out rather than going to a different Dr or facility may not need be your only option.
This can be a very tough decision, either way.
If you ever want to 'talk' you can send me a PM. I would be more than willing to listen.
Thank you dear Charlie, your post cannot be appreciated more than what it is right now :grouphug;
I have not received any call & have left a message for my Neph to call me & am just waiting for Godot right now. I am very naive and gullible when it comes to the medical industry & still have this residual belief that doctors are trying to save our lives. My gut feeling right now is that being labelled a 'palliative care' patient might mean that the illusion of everyone trying to save your life may become even more illusory than what it is in practice. In other words, they might be trying to shorten your life rather than try to prolong it.
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Athena - I thought you were hanging out in Stage 3/4 CKD. Is that no longer the case?
KarenInWA
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Karen, I am in Stage 4 but I no longer have any certainty about these so called stages & eGFR figures anymore, based on how I am actually feeling.
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Athena, I understand what you are feeling very well. I was diagnosed Stage 4, GFR 22 wow, ten years ago. I was terrified and would just as soon have died than go on dialysis. Now, ten years later, I am in Stage 4, GFR 25. It goes up and down and up and down but, so far, my lowest was 16 and then it shot right back up again. I am now 78 years old. I know I can wait until my GFR is lower than it is now and make my decision then. In the meantime, I just keep a good eye on what goes into my mouth and the rest of the time, I live what life I have left. I think you are much younger than I am, but still, there is hope. Never give up (unless of course, you have to ).
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... Has anyone heard anything about how Athena is getting on ?
Thanks from Kristina. :grouphug;
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Athena, I "get" what you are trying to do (care for yourself) by telling them you are "officially" declining dialysis. Since doing that, have they put you into any sort of "program" where you are receiving better care or attention from doctors? Are you being given access to medical staff and labs you are needing or feel you are suffering any backlash for telling them you are declining dialysis? We all have to be our own advocates but my gosh, seems like you've had to jump through hoops just to get them to listen. You'd think they would appreciate a person who is trying to do so much towards their own healthcare. I think doctors would love you but wonder what kind of care you are getting now. Hope it is working out for you and that you'll update us. Take care.
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Hello everyone, I'm back into the land of the living. I'm sorry for being so absent for so long. Hope everyone's doing great & I'd love to hear from some of you old-timers.
Nothing ever really came of my little experiment to test the system by stating that I intend to decline dialysis in the future, if/when it becomes necessary. No one couldn't care less! It's kind of a relief to know that.
I've been keeping myself okay. I'm still eating a normal diet & getting around okay. I have relentless severe constipation now to contend with, the cause of which is suspected to be my BP meds. I'm about to undergo some kidney function blood tests, which will scare me - but I haven't had any done since July of last year! I am well & truly overdue for some blood work.
Wish me luck folks!
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It's so good to "see" you again, Athena!
How are you feeling these days? "Okay" sums it up, I guess, but how are you feeling both in body and soul?
I don't blame you for being scared about undergoing testing after so long, so I hope your results will show that your renal function is still good enough to keep your mind at ease. Please let us know how you get on.
Take care of yourself, and thanks so much for checking in with us!
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Hello Athena, I can't tell you how glad I am to "see" you again.
... Tell you the truth, I was fearing the worst and I am so relieved to "see" you back again.
Hopefully your blood-test will be alright and if they are not overly alright, then we just go from there and please don't forget, whatever happens, you are not alone and we are right with you ...
Best wishes from Kristina. :grouphug;
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I am truly glad to hear from you but you really do need to consider learning to eat a bit more responsibly. Learning which foods place more work on your tired kidneys and which other foods may be substituted can greatly extend kidney function.
To an extent, we tend to eat what we learned as kids. That's all fine and dandy for healthy people, but those of us with failing kidneys need to restrict a few things. Like phosphorus, dark soda.
Long before blood sugar meters were invented I had an Aunt that was severely diabetic. She told everyone she didn't care and was going to enjoy what time she had doing what she wanted. Partied, eating and drinking, not only soda but alcohol and took massive amounts of insulin. Kidney failure soon came and she passed at age 42. This was mid 60's, dialysis wasn't an option yet.
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Athena, so good to hear from you. I hope your blood work turns out to be great!!! You must be doing something right. Keep us posted, will you????
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I am so happy to see an update from you!
The ramp to dialysis was so much scarier for me than actually being on dialysis. Every blood test in the years leading up made me a nervous wreck. I had ten years to dread it and deal with some awful doctors, and declining it really seemed like my best option, but I'm really glad I tried it and found it manageable. Things are so much better now and life is still very enjoyable for me. Knowing that it's entirely my choice whether to continue or not is actually weirdly reassuring. Choosing to go every time is very empowering for me and helps give me purpose and focus.
And, ugggh, I had so many bad doctors! I think very few of them actually have any idea what to do with you until you hit ESRD. And since kidney health is weirdly squishy and subjective, not getting straight answers made me so nervous! It makes such a difference to find one who will listen and work with you. Nephrologists are typically not famous for their bedside manner, haha, but it does help to ask around and find a doctor you trust and respect.
Wishing you good news with your test.
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Welcome back. Glad to hear you're still in the game,
A couple of corrections/clarifications on Charlie's post.
It's not "dark soda" that is the problem. It's cola that has lots of phosph. Root beer is a "dark soda" but not one you need to avoid.
Dialysis has been around a lot longer than the 60's. When I was a child (in the 40's and 50's) my mother's secretary (she was a lawyer) was married to a man with kidney failure who I knew was on dialysis. He had this classic "dirty" looking skin color-- a greyish tinge-- which I understood to signal that the process wasn't perfect (not that it is now, either).
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Not all root beers are created equal google root beer phosphorus and check what you are drinking if memory serves me correct on brand has too much phosphorus in the can but by bottle is ok. Athena some people have lived on the cusp of dialysis for years, if you feel well it is not time to start. The blood tests you dread are not a good predictor of when to start dialysis bu do indicate that you should monitor how you feel. My nephrologist spent 2 years telling me it was time to start but I waited to see a symptom before I agreed to start.
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Here's an article with the phosph/potassium in popular beverages, The root beer I drink has negligble phosph/potassium. So I will continue to enjoy it on occasion.
https://www.jrnjournal.org/article/S1051-2276(13)00181-7/pdf
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Dau has been buying Wife A&W lately. While I don't generally drink any soda I will admit to taking a hit once in a while off hers. Good stuff, Maynard. (In case anyone remembers the term).
The last two weeks I have to admit to splurging with a few cans of the Starbuck's. I should look them up as since I like it it must not be good. Isn't this another application of Murphy's Law? I swear somewhere along the lines I must be related to that guy.
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Thank you so much for your replies, Moose Mum, Kristina, Charlie, Jean, Michael, K&S & Lorinn. Hope to also hear from Rerun soon. I hope she's okay. If anyone's in contact with her, please let her know Athena says hello. There are others not named of course, it would too long a list.
The best thing to have come out of my recent experiences is a much closer bond with my primary nephrologist - he has been instrumental in helping me survive a few legal/insurance matters that had arisen for me over the last few months, by advocating for me. If he wasn't for him, I'd be in great financial strife. I've been homeless but am now settled in a nice new home. I can't believe what I've been through!
He is now really chasing me for my blood tests. I've asked him to just not tell me what my results will be. He said he'll think about it. (Of course, I won't be able to refrain from knowing what they are, once I do these tests! Ha).
Thank you dear Charlie for pointing out that I should pay more attention to my diet. You're absolutely correct. While living in temporary accomodation I had to rely on food that was provided. Which wasn't too bad but there was some binge eating on pizzas & salty crisps as well as ice cream & cakes. As a consequence, my ankles & lower legs did swell up from the excess sodium. My neph didn't seem too concerned though & advised me to tone it down (think he was relieved that I wasn't indulging in alcohol). I have put on a tiny bit of weight which seems to have gone to my abdomen so I'm working on losing this weight gain.
As for dark soda (coke), I only had cravings for it twice but didn't indulge too heavily in it. Boy is that a good 'pick me up' kind of taste during times of crisis!
A serving of cheese each day (which has largely replaced meat) & some dark chocolate are my daily vices. I've got to work on my diet as I am early Stage 4 (or at the end of Stage 3).
My Neph, though nervous now about my lack of blood results, believes I may be stable, given my apparent resilience in facing my homelessness crisis.
Guess I'm hoping that's what the tests will show soon.
Anyway, thanks again everyone for your wonderful messages. I look forward to seeing you again on this site soon.
(Oh & KareninWA & Cassandra, I haven't fogotten you! So many wonderful people on here!)
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One last thing, Athena.
I truly do understand the dread that comes with having to have labs after a long time of not getting them done. But do try to screw up the courage to do it, because once you know what your numbers are, you can be pro-active.
Although I had been diagnosed with fsgs years ago, it wasn't until I returned to the US and had a check up for insurance purposes that I saw how bad my renal function had become. I was in stage 4 with an egfr of around 25. I was so shocked because I felt fine. My new neph said, and I quote, "I don't have much hope for those kidneys". The world turned on its axis.
He immediately put me on cyclosporine to try to put me "in remission". He put me on some bp meds to bring my bp to protect the kidney function I had left. He put me on cholesterol meds because my lipids were truly record breaking. Who knew? All of those meds worked immediately and very effectively. I was stablized for 6 years, and then as my disease suddenly started to progress, he put me on sodium bicarbonate to treat slightly high potassium and then the inevitable phos binders. Long story short, between meds and a renal friendly diet, my kidneys held out 8 years longer than we expected!
So, my point is that if you get your labs done and your numbers show lower renal function, don't panic. There is a lot you can do to get yourself stabilized, and I'm sure your neph will know just what to do. In saying all of that, though, I do understand your worries.
Take care.
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Welcome back. Glad to hear you're still in the game,
A couple of corrections/clarifications on Charlie's post.
It's not "dark soda" that is the problem. It's cola that has lots of phosph. Root beer is a "dark soda" but not one you need to avoid.
Dialysis has been around a lot longer than the 60's. When I was a child (in the 40's and 50's) my mother's secretary (she was a lawyer) was married to a man with kidney failure who I knew was on dialysis. He had this classic "dirty" looking skin color-- a greyish tinge-- which I understood to signal that the process wasn't perfect (not that it is now, either).
Thanks for that. With regards to skin colour, I have a slightly yellowed tinge & when more anaemic, a paler look. I don't think I've ever looked greyish.
My yellowed look is why I seem to be so attracted to wearing shimmering blue & navy colours now.
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Dialysis has been around a lot longer than the 60's.
It was invented during the last world war.
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Well I just got my blood test results after last getting them done in July 2017 - & it's bad! My serum creatinine level & BUN has shot up sharply. All other results such as potassium, phosphate, magnesium, bicarbonate, iron levels, thyroid function, PTH, triglycerides etc are normal or unchanged. PTH had reduced in a happy surprise!
Neph said that there may have been some dehydration affecting these results so has asked me to repeat lab tests in 2 weeks time.
I am now praying for the 'dehydration' causality in deep hope! I did have a mild gastro bug in the days preceding my test (in fact I was feeling quite sick & had some severe diarrhoea).
At the same time I've had worsened blood sugar control due to high stress levels & also bad insulin issues as well being forced to eat more processed goods due to unique circumstances I had found myself in this year.
I'd appreciate any advice anyone may be able to give. I suffer from Type 1 diabetes. I am now thinking of joining some kidney support group with hopefully some nursing kind of support. I just don't know what to do anymore.
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Athena, dehydration is most definitely a cause of elevated serum creatinine! I am a walking, talking example of that. Like you, all of my labs were normal except for a suddenly elevated creatinine. It was scary! My tx team scheduled me for a biopsy. The night before, I was so nervous that I awoke at 2AM. My mouth was so dry out of sheer terror that for the next several hours, I guzzled water. It was a pure physical reaction to the fear.
When I arrived at the hospital for the usual pre-procedure labs, I was still drinking like crazy. When my results came through, my creatinine was "normal" again. I couldn't believe it. Since my other labs were fine, no biopsy!
The doctor who was going to perform the biopsy told me that creatinine was only ONE measure of renal function. That is a very, very important thing to remember. We get so focused on that one number, and we all too often forget about all of the other things that kidney regulate. He was the one who advised me not to have the biopsy BECAUSE my other labs were normal, as are yours.
Since then, I have been making the effort to drink at least 100 oz. of water on the days leading up to labs. And my creatinine is still "normal". And my other labs are still "normal".
So I would advise you to really up your water consumption. The fact that you had had severe diarrhea before your test is very telling, and I think your neph is correct in wanting to repeat the test. I picked 100 oz. just at random, and it seems to have worked, so try that.
Remember that since your other labs are normal/unchanged, there's real cause for optimism! There really is.
All of that said, though, I don't have any experience with diabetes, so maybe all of what I've posted is just a load of old cobblers. I don't know if drinking that much water in the days leading up to your test is good for someone with T1D or not. :cuddle;
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I whole-heartedly agree with everything Moosemom said. And joining a kidney support group is a good idea.
Good luck my friend, love, Cas
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WE'RE a support group!!!!
I would have lost my mind if it had not been for IHD.
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Thank you so much Moosemum & Cas for your replies! Yes, it is really remarkable that all my other renal indicators were normal or unchanged. If there was such a deterioration of renal function, you would expect that some of these other markers would have altered, esp potassium or phosphate levels. I might add that my bicarb levels have stayed normal even though I've been neglecting to take my sodium bicarbonate capsules on most days. Anemia is at 10.7 ehich is not too bad.
Thank you so much for sharing your experience with your suddenly elevated sr creatinine levels Moosemum. That really does give me hope. I have got the next 2 weeks to really look after myself now in time for my next test.
I think IHD is a fabulous support group - I can't even go on to explain how much I have learnt through reading up on other people's experiences with their own kidney health issues.
I am truly working hard to not fall into another episode of anxiety & despair. I've been 'on the run' for more than 1 year now from all medical tests. It's been a nice little 'holiday' for me & I just want to stay strong & hopeful. I feel well & I will allow that to guide me through the next period of gruelling tests.
Good luck to all of my IHD online friends - it's a pleasure to be in the company of such exceptionally courageous, knowledgeable & kind people here.
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It must have taken so much courage to return from your "holiday" from tests! Yay, you!
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"I was diagnosed Stage 4, GFR 22 wow, ten years ago. I was terrified and would just as soon have died than go on dialysis. Now, ten years later, I am in Stage 4, GFR 25. It goes up and down and up and down but, so far, my lowest was 16 and then it shot right back up again."
Jean, my kidney behaves like yours, with the GFR fluctuating between 16 and 25. I'd call 16 and below the red zone. You're 78, so you've been in the orange zone for a while. I'm 70, and I'd be happy to go a few more years without dialysis. But I think that the kidney is like a black box, and the nephrologists can't predict what it will do.
Jean, you haven't posted in about a month, so let us know how you're doing. Learning that someone with my numbers has lasted for ten years in the orange zone gives me a lot of encouragement.
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And like you, I'm careful about my diet.
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enginist your story is so similar to mine! In 2007 my GFR was 22, it dropped to 16 and stayed that way until 2012 when it dropped to 11. I then had an AV fistula formed as it seemed that dialysis was close. Over the next few months my GFR rose to 17. Since then my GFR fluctuates between 12 -17 , My health is reasonably good, treatment for high BP, low iron, I'll soon be 69 and am still working part time :) I watch my diet, try to exercise.
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Hi, Sue--
You've been lucky too, and for ten years no less. Your story and Jean's give me a lot of hope. I'd be happy to go three to five more years without needing the dreaded dialysis, which doesn't seem impossible. If the kidney crashes then, I'll be ready for "conservative care," which means fading painlessly away. When my GFR jumped from 16 to 24, the nephrologist said it was probably "a glitch." She wouldn't have said that if she had read this site.
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Hello enginist and Sue,
I have been pre-dialysis since 1971 when I was found in a coma and urea and brought to Hospital, I had no dialysis-treatment, because the doctors wanted to observe first, because there might be a chance for my body to recover a little because I was so very young. and then I was diagnosed through a kidney-biopsy (by then I had recovered enough to risk the biopsy) in 1972 with chronic proliferative glomerulonephritis with hardly any chance to live another year. or two, because it is a rare deadly kidney-disease, but it was not expected that I would survive without dialysis another 43 years, but with a healthy vegetarian easy-digestible diet and healthy living my "two little fighters" made it until December 2014, when "my two little fighters" desperately needed a little help from a dialysis-machine and I had to finally face it. Fortunately I came across a very good dialysis center, where the nurses were most professional and also extremely kind and understanding and always ready to help me. I stayed there without any problems until midst November 2018, when the call for my transplant "came along". Now I still get over the transplant-operation and I still feel very tired and exhausted from the "heavy" transplant-operation, which lasted hours, but I am visibly much better and I am slowly picking up from the operation.
Of course I did not want to face dialysis and I was also frightened of the unknown, but then I had a talk with myself and convinced myself that trying out dialysis first to find out how ir goes, is not a bad idea, because without dialysis I would die in any case, so I might as well go ahead give it a try. I surprised myself by finding out, that it certainly was not as bad as I had anticipated. Perhaps I was just "plain lucky", but I like to think that my own principles in keeping to the dialysis-rules helped me also a lot i. e. keeping to the liquid restrictions and to my easy digestible vegetarian diet has helped a lot as well.
What I am trying to say is this : Please give dialysis a try, you might be lucky as well and it is so much better to find out what the future brings and how it goes along and how your chances for a transplant are etc.
Please give yourself the same chance as I did and I wish you lots of good luck with it. I send you my best wishes from Kristina. :grouphug;
P.S. The more you "stick" to the dialysis-rules like never to overdo your liquid allowances and, if possible, please find your way with an easy digestible vegetarian diet, the better dialysis is being accepted by your body and soul. Good luck !
All the best again from Kristina. :grouphug;
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Hi Kristina,
I'm well aware that your kidneys survived long past their expiration date. I wouldn't be surprised to learn that it is some kind of unofficial record. There should probably be a statue of you erected in your honor.
P.S. Even on a contemporary instrument, the nocturnes are extraordinary. On the album I downloaded, they're played by Elizabeth Joy Roe, who is as talented as she is beautiful.
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Hi Kristina,
I'm well aware that your kidneys survived long past their expiration date. I wouldn't be surprised to learn that it is some kind of unofficial record. There should probably be a statue of you erected in your honor.
P.S. Even on a contemporary instrument, the nocturnes are extraordinary. On the album I downloaded, they're played by Elizabeth Joy Roe, who is as talented as she is beautiful.
Hello enginist,
Please don't think too highly of my trying, because I am sure that everyone in kidney-failure tries ever so hard as well to find their own survival-way and it just so happened that I have been very lucky over the years and hopefully it continues for some more years. :bow;
But I also had some very lucky medical help.
For example, one lucky moment happened when I met a professor of medicine, who was regarded by other medics as a "medical maverick", because he happened to believe in preventative medicine and in a vegetarian healthy diet to prevent future medical problems.
It was in the early 1970's when I met him and very early days for such believes and since I was considered as a desperate patient, who would try anything to have a chance to survive in my kidney failure, my understanding GP referred me to this professor and he told me instantly that despite the fact that he could not prove it, if he would find himself in such a situation like mine, he would "go vegetarian" and the way he explained it to me, it sounded very logical and convincing and so I instantly tried it out and have remained a vegetarian ever since. His explanation was, that kidney failure keeps the whole body in turmoil and in action in order to "assist" the failing kidneys and therefore the body needs every help it can get and also some peace and quiet to be fully able to concentrate on assisting the failing kidneys and therefore cannot take on the heavy digestion-"job" of taking on heavy meat- and sausage-food. That sounded very logical to me and not at all "maverick".
I believe this meeting with the professor was one of my lucky breaks and it has helped me ever since. But I must add, that a vegetarian diet can also have some dangerous potassium-moments and you can't eat too much of vegetables at once, because of the potassium etc. Whenever my potassium shows a bit of a high reading, I instantly cut down my vegetables and add instantly more noodles/pasta to keep the potassium as it should be etc. Please ask your doctor about it as well.
Good luck from Kristina. :grouphug;
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P.S. Even on a contemporary instrument, the nocturnes are extraordinary. On the album I downloaded, they're played by Elizabeth Joy Roe, who is as talented as she is beautiful.
Hello enginist,
What a good choice you made there, because she plays the Nocturnes of John Field exactly as sensitive as they wish to be played...
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Hello everyone. I bring bad news. I've just had some blood tests done & though all my electrolytes were fine, my egfr is now only 18%. My creatine has shot up. I believe I lost a lot of function from a bad flu I had 2 years ago.
My Nephrologist has now referred me to a transplantation centre to get me on the list to receive a 'pre-emptive transplant' & to avoid being on dialysis. The age limit is 50 in Australia & I am 52, so that's going to be a tough criterion to over-ride. My Neph confirmed that I am quite healthy & a pancreas transplant would also be performed to eliminate the Type 1 diabetes that has been with me for 32 years.
I feel overwhelmed & mad with grief. I've lost my kidneys! I don't want to live my days being immunocompromised & living with the risks of developing cancer & infections galore. And I don't want to go through dialysis either. This is a dreadful situation!
What are people's thoughts on these 2 options. Is a transplant a much better altermative to dialysis?
Very sad & confused,
Athena
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Oh, Athena! I am so very sorry you are going through this. It is a nightmare, I know. It is all such a loss, and I am filled with grief for you.
I am sure you will get so many different answers to your question about dialysis vs transplantation. It is such a personal decision with so many variables. Only you can decide what is right for you.
The first thing I would say is that I am very glad that your electrolytes are good; this suggests that you are feeling relatively well despite such renal function loss. That's a GOOD thing.
The second thing I would say is that I would suggest starting the process of getting on the transplant wait list, now that your neph has referred you. This is also a GOOD thing because it keeps your mind busy and helps you gain back some control over your life.
I admit to having had a soul-crushing fear of dialysis. My mother was on dialysis for the last five years of her life, and I know what it looks like. I have read many posts on IHD from many people who say that the anticipation of it is much worse that actually being on it, but I personally do not buy that and certainly do not want to find out! My son lives abroad, and the idea of not being able to go and see him every year for a month as I do now (with a transplant) makes me sob. So for me, personally, gunning for a pre-emptive transplant was a no-brainer. I never doubted it, and I've never looked back.
I had that pre-emptive tx almost 7 years ago, and I have not regretted it for a nano-second. Like you, I was pretty healthy despite my duff kidneys, so perhaps that helped me get through it all more easily than a lot of people. Yes, there is a higher risk of developing certain kinds of cancer, but it just means I'm more careful and have 4 different kinds of sunscreen scattered about my home!
Oops, there's the doorbell. I'll be back.
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Athena the best I can suggest is to proceed with getting listed to help become knowledgeable with the process. You should have the ability to go on hold or back out if you complete the big process to get listed. If you get to the point where you are listed and you still question the value of the transplant then you could make the choice to put your decision on hold, or maybe just wait on the list and save the decision for another day - like when they offer you a transplant.
For the transplant versus dialysis question here is my experience - for dialysis I was in the hospital when I started and then from that point only I was in center for treatment three days per week with virtually zero other appointments to deal with, post transplant I have had way more hospital/clinic/doctor visits, especially in that first year. So post transplant the medical overhead felt like it was more with dermatology, nephrology, endocrinology etc. visits and lab work all the time - but that being said its way less time/visits then the clinic visit three days per week. I responded to dialysis well and it was very manageable, however post transplant it is an easier life, a majority of the time I would have been in the dialysis center was recovered, and my freedom around medical things is way more free - I have Dr Appointments on the way to work and arrive a little late, versus leaving work at 1:50 PM three days per week.
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Hello, again. I agree with everything iolaire has posted. No one is going to force you to have a transplant.
I have always wondered just how immunosuppressed we tx patients really are. I mean, yes, obviously, we ARE compromised to a very specific degree, but you know, I have labs done every month (now every other month), so I have a complete white blood cell count done regularly. I have never seen any of those wbc counts out of normal range (apart from only one time when a particular type of wbc was very very low, about 3 months out. It was due to one of the meds, so I got a shot of Neupogen, and I was fine.)
I have been ill only once. I caught a cold when I was in London last year, right at the end of my visit. It was the first cold I'd had in decades. I would have been fine if I had not been so busy, had flown back across the Atlantic, then spent days preparing my house and gardens for the autumn/winter. If I had just gone to bed and stayed there for a day, I would have recovered just fine instead of having the lurgie develop into bronchitis. But other than that, I've been fine.
Anyway, that's my experience. I understand that for you, things might be very different because of your diabetes. I know this must be a very difficult time for you, and we are all here to help in any way we can. :grouphug;
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Hi Athena. Good to see you again.
First and foremost, if you feel uncomfortable or that your medical team is pushing you one way or the other, you need to speak up. You need to be comfortable with declining dialysis (as you have stated this for a few years) and especially going forward with transplantation. Go through the process to get listed (as there will be hoops to get over) but take some time to think about what you really want. What is it do you want now that wasn't there before? I mean this question in all kindness (as you know) because you seemed pretty self assured prior in going the hospice route (unless I am mixing you up with someone else.)
I've had a kidney and pancreas transplant. If you have any questions, ask away. Strings had to pulled for me too since my HBA1C was well-controlled but the team wanted to offer me a better quality of life. That is, besides living with Type 1 from a baby, live without it. In my personal case, it has been a wonderful experience. Not everyone can say that because the pancreas is a tricky organ. But, that is up to you to read the pros/cons and decide which way you would like to go forward. There are many good sources out there. Again, if you need any insight or help, let me know.
I agree with the above in that I really question just how much we are immune suppressed. I caught a strange virus in the fall but besides that, I have not been ill. Knock on wood, but I caught the worst colds and flu pre-dialysis and on dialysis. It takes a lot of preventative common sense and there are numerous tips for that on here and all around the internet. It's basically stuff everyone should do like wash hands and use sanitizer! All of that said, things DO happen. Such as, I get shocked to hear about patients that have done well for so long and get some sort of (STRONG) infection and pass away.
So, due to a lot of other things going on with me, I am at an elevated risk of lymphoma. That's one of the cancers we have to watch but I was advised that the though elevated compared to the average population, the risk of development is still low. Skin cancer is a definite concern but that can be managed. All drugs have side effects, right? Damned if you do or damned if you don't. So, I can't tell you how you particularly will react to the drugs, but the worst of my side effects has been burping, hair growth and acne. Nothing major.
You are one of the people from around the time on here when I openly said that I preferred conservative care. I totally thought my life would be over on dialysis and I had the images of sick weak people struggling after the session. If you take good care of yourself, and are in relatively good health overall, you will (probably) tolerate dialysis well enough. If I recall correctly from years past, you worried about going through such a treatment while living alone. With some pre-planning, such as appropriate meals made ahead of time to enjoy when you get home, it takes off some of the stress.
The choice is always in your hands. You can choose to decline dialysis and you can choose to decline transplant. It is up to you to decide and to be at peace with your decision. This isn't a matter of a quick yes or no. This is something that requires you to really think about how you envision your life. You see dialysis patients still able to have decent, fun, productive lives. And heck, transplant in many cases is the most boring outcome! It is not all gloom and doom. But, you need to be comfortable with your decisions. In the meantime, since it takes a lot of time, start the basic transplant testing, and if you don't want to go any further or be listed, you can state that.
Big hugs. It's not easy. You know where to find us.
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Very well said, UT. Well done! What a great post! :clap;
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The worst part of Dialysis is sticking to the fluid and diet restrictions. Daily treatment, be it Hemo or PD have far great freedoms than treatments in clinic 3 times a week. Larger fluid take-offs are hard on the body and contribute to the sickness that cause far too many patients to give up and quit.
It isn't easy to stay so dry, but determination and lots of practice, it does get easier.
I think it is simple Fear, people are scared of the Idea of dialysis and are unable to get past that fear and learn that Dialysis really can work well, but it does take determination and hard attention to details.
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As to transplant vs. dialysis; it's really a matter of which master you want to deal with. Choosing neither means a fairly quick death. My mother went through 2 transplants, so I know that transplantation is certainly no panacea. In fact, complications due to her anti-rejection meds conflicting with cancer medication was at least partly due to her demise. Dialysis requires a rigorous schedule of treatments, but transplantation requires a ridiculous amount of medication, about 4 months recovery time from the surgery, and rejection that can happen at any time, requiring you to go through the whole cycle again. I really can't see where one is any better than the other. At least dialysis is something you can plan around..
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Alexysis, I am so sorry to hear that your mother had such a tough time.
Transplant actually IS a cure for certain underlying renal diseases. However, a transplant DOES pose certain risks, many due to the medications. But those medications are much safer now than they were before, and the constant testing (which is another "con", but you get that with dialysis, too) and labwork can help to quickly identify any problems, and medications can be amended.
I personally don't see my meds as being of a "ridiculous" amount. I took more meds before my tx than I do now. But yes, it IS a lot, but it just becomes part of my normal routine. I don't really think twice about it, anymore.
I was transplanted on a Sunday morning and was home by Wednesday afternoon. It certainly didn't take me 4 months to recover. I've had other abdominal surgeries that were much, much harder on me. But everyone has their own story of recovery. I regret that your mother's was so hard.
Yes, rejection can happen at any time, and that's another reason why labs are done regularly. I was having a chat with my tx neph about this very topic just a few months ago. She told me that I'd be shocked to hear how many of her patients are non-compliant with their immunosuppressant protocols, ie, they don't take their meds correctly. The leading cause of rejection is medication non-compliance. It is really important to know HOW to take your meds! Some need to be taken with food. Others need to be taken on an empty stomach. They all need to be taken MORE than 2 hours before/after taking any kind of vitamins or supplements. Some have to be taken a certain number of hours apart. So, it can get pretty gnarly if you don't know what you're doing. But plenty of people manage to do it right day after day, year after year.
But it is true that the drugs can be toxic to the very organ you want to save. Again, this is why labs are done so frequently, to test the levels of these drugs in your blood.
And it is also true that even if you do everything "right", rejection still can occur. But then again, it might not. We might get killed in a car crash tomorrow. But then again, we might not.
In my very humble view, dialysis keeps you alive while transplant give you a better chance to live. But you are right in saying that there are many factors to think about. Most people don't have a choice and have to dive straight into dialysis.
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Athena,
Don't give in just yet. There are a number of members here that have put of beginning Dialysis for many years just paying strict attention to details such is responsible diet and responsible fluids, both type and volume.
You yourself have already seen a huge extension.
Kidney function is a strange thing, it can be affected not only by your fluid volume and diet, but weather changes, ANY medications, be they prescribed or OTC.
I can't say what herbs, but some herbs and spices may be beneficial to function.
That old adage, "All things in moderation" really does apply.
Don't lose Faith.
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Thank you so much everyone for your replies. Each one has meant so much to me! I am locked into hearing it all from the doctors & nurses right now, so any words of wisdom & accounts of direct experience from fellow patient/warriors is extremely valuable to me.
Today I was educated about dialysis methods (home hemo, in centre hemo & PD (both the manual & automated PD). I don't know how I managed to calmly take it all in.
I seem to being encouraged towards accepting dialysis by everything I have heard today. My new neph is not a pro-transplant type of guy (who works at the preferred hospital). It is my old Neph who is making the case for my being listed for a transplant.
But from everything I have learned - the pancreas tx is very risky to me because if the new pancreas fails - I can't go back to my native pancreas (which functions normally except for the deficient insulin cells). I wonder what your thoughts are on this UkrainianTracksuit?
If I'm going to avoid a pancreas tx, then the only way that I can have a preemptive kidney tx (and avoid dialysis) is to find a living kidney donor! How on earth does one find one? This is a massive problem. The enormity of this dilemma is truly mind boggling. I refuse to even think about asking my sibling to consider donating to me - it's just not going to happen.
The dialysis coordinator seemed to suggest that Peritoneal Dialysis (PD) seems to be the best option. I was shown a photo of a man who travels with PD & who leads a very active life. He seemed to look quite healthy. But that catheter tube that will stick out of one's abdomen is not ideal - it looks risky where infections are concerned. And the thought of having all that extra fluid in the abdominal cavity seems debilitating (for one thing, the missionary sexual position would be unviable because of abdominal pressure).
I am a bit overwhelmed at the moment & I'm just laying it all out on the table, so to speak. It has only just started for ne - I've avoiding looking at this subject for years now.
I will be back to a dialysis education seminar & then to a transplant education seminar over the coming few months.
In the meantime, should I get the flu vaccine? I've never bothered with this thing before as I've not been prone to getting serious colds or flu. I've had a pretty good immune system. I am worried about any serious reactions to the flu vax - I seem to be becoming paranoid & anxious about the concept of being injected with chemicals lately.
Athena.
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The dialysis coordinator seemed to suggest that Peritoneal Dialysis (PD) seems to be the best option. I was shown a photo of a man who travels with PD & who leads a very active life. He seemed to look quite healthy. But that catheter tube that will stick out of one's abdomen is not ideal - it looks risky where infections are concerned. And the thought of having all that extra fluid in the abdominal cavity seems debilitating (for one thing, the missionary sexual position would be unviable because of abdominal pressure).
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In the meantime, should I get the flu vaccine? I've never bothered with this thing before as I've not been prone to getting serious colds or flu. I've had a pretty good immune system. I am worried about any serious reactions to the flu vax - I seem to be becoming paranoid & anxious about the concept of being injected with chemicals lately.
Athena I'm glad you are able to attend the dialysis education and get continue to be learn about the options beyond declining dialysis.
Don't let the image of an active healthy PD patient cloud your view of the other dialysis treatments. The same image could be shown for HD patients as well (or transplant recipients). But the message that you can be healthy on dialysis is a good one, but that depends on the overall health of each individual person.
The flu vaccine is a good question. I've not been hit hard by the flu in the past but did start taking it when it was offered at work and later at the dialysis clinic, and now back to work flu shots post transplant. (I could get it at my nephrologist as well.) I guess to me it seems more risky to risk the flu which is common, versus reactions to the vaccine, which I feel is much less common than the flu.
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Flu vaccine-heck yes! and check to be sure you are up to date on everything else: pertussis, pneumonia, shingles, etc.
Sex while on PD-maybe just takes a little more planning/scheduling,"hook up before you hook up" So things are not always spontaneous, so what? PD is gentler on your remaining kidney function. I did it for 2 years prior to transplant.
You are doing great-keep asking questions!
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But from everything I have learned - the pancreas tx is very risky to me because if the new pancreas fails - I can't go back to my native pancreas (which functions normally except for the deficient insulin cells). I wonder what your thoughts are on this UkrainianTracksuit?
Hi Athena, good to see you again!
As for the pancreas tx, you keep your native pancreas too. It keeps on doing its digestive and enzyme functions. So, there are two inside you. If the new pancreas fails, it is like life before: back on insulin. The native one keeps on doing its thing either way. It’s a pretty impressive CT scan of the torso to say the least!
Sending good vibes for the dialysis education and you make a decision that’s best for you!
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http://kidneyschool.org/
I learned a LOT at this place back when I was just starting this adventure. The more you know the better equipped you will be before starting.
I did PD for 3 1/2 years before I slipped and gave myself an infection from Hell which caused me to have my PD Cath removed.
PD can be a life-saver, not just the dialysis part but for me being medically retired I was still eating as if I were working. And I was gaining stupid amouonts of weight.
Having 2 liters of 'fill' caused me to seriously change my eating habits. I began to eat not only less, but I made a conscious effort to eat healthier. My first 2 years on PD I lost 100 excess pounds.
PD I had the freedom to eat whatever I wanted and I could drink as much as I wanted.
On Hemo we do not have that luxury. We have to stay veery careful.
My PD Cath was 'tunneled'. The exit site was mid-way between the center of my breastbone and my left nipple. I thought it quite handy as it made it easy to see, to clean, make my dressing changes. I had a couple of the PD Belt holders, but didn't like them at all. I can relate to how a woman wants to get that bra OFF. I usually taped it to hold it solidly. A couple of my pocket T-shirts I cut a small hole in the backside of the pocket, stuck the cath through and it would lay in a curl in the pocket.
A solid week of training, they wanted to make SURE I knew what to do.
My first year I did 4 manuals daily. Being and outside kinda guy it was a PITA. I had alarms set on my phone to remind me when it was time. I had to stop whatever project I was doing, scrub my hands and arms spotless, go in the house and get done. 4 times a day.
I thought it really neat when I finally got my Cycler. NO MORE MANUALS> No more interruptions in my days.
Set up the Cycler with all my bags, prime it, plug into it, sit and read a while then go to bed. Get up in the morning and disconnect.
The downside to the Cycler was my program was so long I was in the bedroom by 7 every evening.
Since my PD infection caused me to switch to Hemo and I have an early seat time, I am an early riser anyway. The total time weekly is far far less for me doing in-center hemo. I am fine with that. I take my laptop, sit and read, the time just flies as I am lost in my own world. This works for me.
There will be Pro's and Con's to all Dialysis, The trick is learning more about everything so you can better tailor your treatment to suit YOU!
Ask away, we will be glad to spell out anything we can so you can make better informed decisions.
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I've been keeping a bit of a low profile lately but just want to provide an interesting update. In early July I actually met my transplant nephrologist & transplant coordinator. We had a 2 hour consultation. With an eGFR of 18% (serum creatinine level of 250 umol), I have been placed on an 'inactive' pancreas & kidney transplant waiting list (I am a type 1 diabetic). I will undergo the full medical tests if/when my eGFR falls under the 15% mark, which is when dialysis will need to be started.
In spite of this morbid state of kidney functioning, I seem to be in very good health otherwise. The Neph took my arterial pulse rate in my thigh/groin area as well as at ankles & it was found to be very strong. I have clear lungs & no swelling anywhere. I exercise without difficulty & have no shortness of breath.
My regular neph has told me that he finds it remarkable that I don't have any peripheral neuropathy or balance issues, which is what he generally finds with long term diabetics with kidney failure. My electrolytes are all within normal reference ranges (except the PTH level & iron stores is starting to fall again).
The other interesting details is that my lifelong abstinence from drinking & smoking serves me very well at this important juncture. As well as not having had any blood transfusions to date.
I see the transplant neph in Jan 2020 for a review.
I have been made aware that the only way I can have a preemptive kidney transplant is by having a living kidney donor. If I can't find a donor, then the only other way is to be placed on the active list & wait for a deceased pancreas & kidney donor. To be placed on the active list, I need to fall within the 10-15% egfr range. Man, that feels like it can be close!
Diet still confuses me as I eat a fairly normal healthy diet (no junk food) with animal protein at dinner with lots of green salads & fresh berries & lots of Greek yoghurt for dessert. I do eat out a lot but I make healthy food choices when I do, whereever possible. My neph has not condoned animal protein restriction - he has even advised, when I grilled him, that many scientific studies do not support protein restriction in CKD.
Well I think this may be enough so I'll stop here.
I would really appreciate any comments or advice anyone can offer me.
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Athena,
Okay, so, reading your post from a couple months ago now, I do have some thoughts for you to consider. I just don't frequent here very much.
First of all, I too went to transplant eval recently. August. They were then, and still am today, shocked that I am not on dialysis. My egfr is around 17-18% and I only have one kidney!
We are in similar places, except I am younger (46). I still lift weights (compound barbells, the real stuff) three times a week. Just today I squatted 3 sets of 195 lbs for 8 reps for my core lift. Then did 3 sets of 10 seated overhead presses at 75 lbs right after. Then I went to the easier stuff.
I get to yoga as often as my schedule allows (twice a week, most weeks). I walk a fair bit still.
My blood type is B+, which means I'm going to have a long, long wait for a cadaver kidney. Sucks.
Anyway - I would suggest that, although I don't believe you should categorically refuse dialysis, I wouldn't necessarily let them force you onto it either. For the record, and I've told the doctors this - I'm going to fight to go without dialysis as long as I possibly can. I've read people functioning adequately at 8-10% eGFR. Everyone is different, and in my experience so far, very, VERY few people are as fit as I am.
Additionally, there's not a single other health related problem of consequence, outside of the standard kidney related stuff. I just did an echo two weeks ago and crushed it. Got my BPM to a steady 160 and felt my knees would give out before my heart ever would. I was at like 15-16 on the borg scale at the very end.
Also, I too have been recommended that an 'average' protein diet is fine. My nephrologist is literally on the board of directors for my disease (PKD). She was the chief science adviser for five years. I am 170 lbs and she wants me at 65-75g protein a day. Many days I'm under simply because the process of eating low salt, low potassium, and now lower phosphorus really makes eating healthy a struggle. Never mind maintaining muscle mass.
I will add that as far as animal protein goes, my neph did suggest keeping it limited.
You sound like a fighter. Keep fighting. It's hard, I have dark days and short periods of time. It sucks. However, I rebound. Because surrendering only expedites the problems. To hell with that.
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My nephrologist is literally on the board of directors for my disease (PKD). She was the chief science adviser for five years
She may know one of my former MDs - Dr Ron Perrone was running that show from 2006-2010., but turned his transplant clinic over to another MD a few years ago.
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Absolutely, Simon.
I've seen some of his videos.
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Athena,
Okay, so, reading your post from a couple months ago now, I do have some thoughts for you to consider. I just don't frequent here very much.
First of all, I too went to transplant eval recently. August. They were then, and still am today, shocked that I am not on dialysis. My egfr is around 17-18% and I only have one kidney!
We are in similar places, except I am younger (46). I still lift weights (compound barbells, the real stuff) three times a week. Just today I squatted 3 sets of 195 lbs for 8 reps for my core lift. Then did 3 sets of 10 seated overhead presses at 75 lbs right after. Then I went to the easier stuff.
I get to yoga as often as my schedule allows (twice a week, most weeks). I walk a fair bit still.
My blood type is B+, which means I'm going to have a long, long wait for a cadaver kidney. Sucks.
Anyway - I would suggest that, although I don't believe you should categorically refuse dialysis, I wouldn't necessarily let them force you onto it either. For the record, and I've told the doctors this - I'm going to fight to go without dialysis as long as I possibly can. I've read people functioning adequately at 8-10% eGFR. Everyone is different, and in my experience so far, very, VERY few people are as fit as I am.
Additionally, there's not a single other health related problem of consequence, outside of the standard kidney related stuff. I just did an echo two weeks ago and crushed it. Got my BPM to a steady 160 and felt my knees would give out before my heart ever would. I was at like 15-16 on the borg scale at the very end.
Also, I too have been recommended that an 'average' protein diet is fine. My nephrologist is literally on the board of directors for my disease (PKD). She was the chief science adviser for five years. I am 170 lbs and she wants me at 65-75g protein a day. Many days I'm under simply because the process of eating low salt, low potassium, and now lower phosphorus really makes eating healthy a struggle. Never mind maintaining muscle mass.
I will add that as far as animal protein goes, my neph did suggest keeping it limited.
You sound like a fighter. Keep fighting. It's hard, I have dark days and short periods of time. It sucks. However, I rebound. Because surrendering only expedites the problems. To hell with that.
Thank you FightingPKD for your detailed response. We are in very similar stages ie 17-18% eGFR. I've just had recent labs done & am literally not wanting to know what they are! I figure, if they were extremely bad, someone would have called me by now.
You have an impressive enviable exercise routine. I know what you mean by saying you feel relatively fit & healthy. I do most days as well. I am a long distance walker & hiker. I seem to have good aerobic capability - even though I need to take EPO injections to avoid becoming anemic.
The way I cope with this disease is to live day by day & not think too much about the future. I am literally happy to wake up each day & see that I am still alive & able to get through it. I try to pursue enjoyable activities as much as I can & feel happy when I do. I also still have fairly good stamina & determination to overcome challenges & obstacles that come my way.
Everyrhing is now in dissarray where future medical treatment is concerned. My regular Neph who has looked after me for 10 years is quietly retiring. My transplant Neph is fully retiring next year & I will be in the care of a much junior less experienced Neph! I thought I was on the inactive kidney transplant list but apparently I'm not, as it was revealed to me.
So all roads lead to the one conclusion, which is that I don't want the future to arrive! :stressed
Today is the most perfect moment in time. It will never be as good as it is today. :bandance;
But I will fight for myself in whatever situation I will find myself in. That's a given.
Thanks for your attention & for listening. Obe question I have for you is whether strenuous weightlifting may place a bit of a burden on your kidneys? I have heard this before somewhere but am unsure of any real facts about this.
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Yes, Athena is right. Weight training can cause your creatinine to rise. I wouldn't take the chance. What's healthy for a normal person doesn't always apply to a kidney patient. The same is true for most animal proteins. You should introduce tofu, egg whites, and low-sodium tuna to your diet. And a daily smoothie with a scoop of whey. And when you've faithfully observed the renal diet for a week or so, you can have a free day and go nuts with a burger or a beef burrito or anything else you want. You can also wash it down with a couple of beers. Most days you have to be virtuous, but occasionally you can be indulgent and delinquent. When my GFR was 17, I was told to start preparing myself for dialysis. And then, on the very next draw, the number shot up. I'm convinced that it was due to my conscientious diet. You can read posts by Jean and Kristina, to name just two, who wrung many years of extra life out of their kidneys by being hyper-vigilant about their food intake.
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Strenuous weightlifting does (temporarily) increase creatinine levels. It also temporarily increases blood pressure. However, I'm living proof that the benefits outweigh the risks if it's done right.
I was first diagnosed in 2004, at age 31, when I actually lost my first kidney (freak incident, detailed in my intro post). My second one was at 50% egfr then. It's been 15 years since, I've been lifting to some extent for almost all of that time.
All I can tell you is I blew away the entire staff that reviewed me from the surgeons to the dietitian to the cardiologist. By - in this instance - not doing what they told me, I'm 100% convinced I've not only given myself a superior quality of life over this time , but I'm better equipped to deal with the transplant experience going forward. Today, I'm in physically better shape than healthy men 10 years younger than I am.
I suppose "everyone is different" though.
I also do yoga as I mentioned somewhere, 1-2x a week. I also, like you Athena, do a lot of walking. Walking for distance is a HIGHLY underrated exercise for middle age to older folks. Walking/hiking endurance gains are real and they are virtually no impact on the body! I don't walk as much these days with the weather getting colder, but for about 6-7 months this year I was walking around 25-30 miles a week.
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That said, I completely agree with the dietary stuff Enginist said.
I've been on this type of diet for about 18 months now (low sodium was the latest modification then). The sodium was HARD. It took my wife and I about 4 months to really get a grip on low sodium cooking. I lost like 10 lbs over the first few months because I simply wasn't eating much.
Thank goodness my wife is a very good cook and she eventually got a hold of good recipes. Most nights she'll make a dinner with enough leftovers for me to eat for lunch the next day. Breakfasts are on me, I tend to eat high fiber oatmeal, scrambled eggs and cheese with salsa, or a millet/flaxseed bagel with butter.
There are actually low sodium versions of food out there, they are just hard to find. We spent dozens of hours researching all of the grocery stores in our area, finding the lower salt options for virtually everything. Example: We actually found bacon that was 75mg of sodium per slice. Seriously, it's nitrate free too. I think my wife gets it at BJ's. Example 2: Most cheese is actually workable into a low sodium diet. Cheddar cheeses can run as low as 110 mg/slice. If (whoever reads this ) commits to the time and research, you'll be amazed what you find. There are plenty of spaghetti sauces under 200mg a serving.
I tend to have two serious cheat meals on the weekend. During the week I rarely go over 2g of sodium (the parameter I'm given) much at all. Maybe once if we have to eat out one evening. My alcohol consumption is fairly limited for the most part. I may go out and binge drink with my wife or a couple friends once very few weeks. The rest of the time it's maybe 3-4 drinks at most during a given week.
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When those who maintain a fitness routine are stricken by an illness, they are likely to have better outcomes than those with a similar illness who are out of shape
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When those who maintain a fitness routine are stricken by an illness, they are likely to have better outcomes than those with a similar illness who are out of shape
I totally get the concerns with doing it. I literally know of ONE other person, in all of the kidney forums/groups I've ever visited, that did the same as me. He turned out well, too.
My nephrologist (again, an expert in the field) was not a fan initially. Over the years she seems to have come around on it, but I suspect she's seen the benefit in me. Her sons starting doing crossfit a few years ago so we talk about it.
Even if we were to, for a moment, entertain that I am right, and what I've done is repeatable by a certain population of kidney patients- there's still major risk involved.
I spent months and months studying and fine tuning the compound barbell movements. Anytime I had pain, I backed off. I never once have had blood in my urine since lifting, and as recently as 3 years ago I was pulling 335 and almost squatting as much.
Having a high level of self-awareness and capable of understanding when to stop, deload, take a break is unfortunately not always common sense. People can and do get hurt doing what I do. It takes commitment to education. Just like everything else involved with this disease.
I do think, if I were to EVER suggest to someone to do what I did....I wouldn't do it EXACTLY how I did it. I lifted HEAVY. I mean, in the strength matrix of 1-5 rep sets. If I could do it over again, I think I would stick more towards strength/hypertrophy hybrid --> 5 to 8 rep range where your heaviest sets are 5 rep maxes. I've been doing this latte version for the past year or so. I've also adapted to my kidney as needed. 3 months ago I stopped doing conventional deadlifts, and now do trap-bar. Less masculine? Yes. Required for my kidney now? Yes.
I do think I took some un-necessary risks by pulling so heavy for so long. Risks that didn't come to bite me. This was simply part of my mindset. I hate the fact this disease has sucked the strength and masculinity out of me, slowly but surely over the past 15 years. I've always been fit, always played sports. Tennis and hockey in high school, hockey in college and after until the day I lost my first kidney.
Ultimately, I decided that I wasn't going to allow my body to decay any faster than it needed to just to cater to a problem kidney. From what everyone says, dialysis is nothing but physical decay. I chose to fight by building some muscle mass and enjoying the past 15 years or so as best I could :)
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Tim,
I too am a fitness buff and my name is Tim. I did martial arts for 30 years and especially loved the sparring, which I miss. I'd still be doing it, but because of a poorly trained nurse I ended up with a suprapubic catheter, which means that I can't take any jabs or side kicks to the gut. I can, however, run, swim, and do stairs. I also like body-weight exercises, such as pushups and chin-ups. Although I have CKD, my kidneys aren't as bad as yours. I recently had an incarcerated hernia that left me puking for two days until I called an ambo. The dehydration sent my GFR down to 11, but it recovered fairly well. I have been extremely lucky since I was first diagnosed, but my nephrologist says that anything could take me out--flu, pneumonia, sepsis, or one of those insidious hospital-acquired infections. When that day comes, I have resolved to skip dialysis and go straight to hospice. I am 71, so at some point I will begin to deteriorate, regardless of what happens to the kidneys. I don't want to go to a nursing home. You, on the other hand, are still young enough and strong enough to do well on dialysis. I think you will be fine. There are many posters on this site who have remained vigorous in mind and body after years of treatment. You will learn a lot from them.