Officially am declining dialysis

[Athena]

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.

[Paul]

Dialysis has been around a lot longer than the 60's.

It was invented during the last world war.

[Athena]

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.

[MooseMom]

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.   

[cassandra]

I whole-heartedly agree with everything Moosemom said. And joining a kidney support group is a good idea.


Good luck my friend, love, Cas

[MooseMom]

WE'RE a support group!!!!

I would have lost my mind if it had not been for IHD.

[Athena]

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.

[MooseMom]

It must have taken so much courage to return from your "holiday" from tests!  Yay, you!

[enginist]

"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.

[enginist]

And like you, I'm careful about my diet.

[Sue]

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.

[enginist]

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.

[kristina]

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.
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.

[enginist]

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.

[kristina]

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. 
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.

[kristina]

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...

[Athena]

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

[MooseMom]

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.

[iolaire]

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.

[MooseMom]

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.   

[UkrainianTracksuit]

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.

[MooseMom]

Very well said, UT.  Well done!  What a great post!

[Charlie B53]

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.

[Alexysis]

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..

[MooseMom]

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.