27 years off dialysis

[chicablue]

In 1995 almost died from meningococcal sepsis. Was hospitalised over 6 months requiring wound care, debridement, skin grafts, amputations of fingers and toes.

The resulting kidney damage classified as meningococcal Waterhouse Fridericksen syndrome. The treatment was dialysis to remove the bacteria from the blood for about 5 months. Then I had rehab in a nursing home for 3 more months.

I have managed to stay off dialysis ever since, even though a Dr had told me I would be on it for the rest of my life and that I only had 5 years to live! Never believe a dr when they tell you that!! I had a new dr when I finally got to come home. The only treatment I had since was blood pressure med (Diovan) which was switched to Losartan after they discovered the first one caused lung cancer. This year had to discontinue the Losartan because potassium level became too high. So now am not on any medication.

After 27 years, have had a slow gradual decline to a GFR of 11.3 at present. My chief complaint is the fluid accumulation around my eyes, which is the worst in the a.m. when I wake up. My other chief complaint is having to get up every 2 hours at night to empty my bladder! It has been like that ever since stage 3. I really balked when they wanted me to take diuretics, because they work the most at night when I'm trying to sleep! My Dr did not believe in vitamins or supplements, but I did. Once I asked him if I should do something different, and he said "No, keep doing exactly what you are doing!" So I did, but I didnt tell him I was taking supplements.

I had read that patients who take supplements had a 50% better chance of staying out of the hospital than those who did. He did recommend I take fish oil and vitamin D3. I also take supplements to support my liver, as well as B1 for kidneys.

[Bassetmommer NKF Ambassador]

Wow Chica, you have had a time of it. We really cannot recommend supplements as each individual had different needs. At a low GFR, supplements can build up in the body and can be dangerous. So whatever you end up with, run it by the doctor. Vit D and Fish oil are common ones that a lot of people take, including me. Just watch the level of VIT D as it can build up and become toxic. Thanks for the info about B1. I am looking into that one and may ask my neph about it?

[chicablue in reply to Bassetmommer]

I found the B1 info on one of these posts on this blog

[chicablue in reply to Bassetmommer]

I do get my d3 tested, it is always low

[Sarah_402]

That is really impressive! Can I ask what your eGFR was throughout the 27 years? I have AKI and also CKD.

[chicablue]

I dont know what stage I was at when i got out of hospital in 1995. I asked but my drs rcords didnt go that far back. Before he retired, he told my new Dr I remained stable in each stage for an average of 7 years.

[Sarah_402 in reply to chicablue]

Thank you for sharing. It gives me some hope I’m stage 3b and hoping I can stay there for a while.

[Bassetmommer NKF Ambassador]

Yes...... when the kidneys are impaired and cannot not filter, which is their primary function, not only do toxins from the blood build up but everything like vitamins, minerals and medications can build up as well. The blood circulates in the body, and then goes to the kidneys to be filtered and then we eliminate the toxins in our waste. When the kidney functions as it should, waste passes in urine and feces. When the kidney can't filter correctly, which is what GFR means, glomerular filtration rate, the blood does not get clean. This is one reason why it is important to have labs done, especially if you are taking any medications that have potassium (BP meds) or supplements with minerals and vitamins. It is why people feel so punk with end stage renal disease.

A common one is Vit D, which can become very dangerous if it builds up. I was taking magnesium supplement for years with no problem. As my kidneys declined, I ended up building up a level in my blood that was way too high and had to stop it.

ncbi.nlm.nih.gov/pmc/articl...

cjasn.asnjournals.org/conte...

[S_dillow]

Stage 3b here too have been since 2019

[Blackknight1989]

Much like you I have been stage 4 for 26 years. Mine was CKD stage 4 diagnosed February 1996 due to life long HBP and the Army’s live in the mid-1980s to prescribe 120 800 mg ibuprofen for sprains and strains. However, my ER doctor was completely incompetent and made a huge error that lead to AKI 4 days later with multi-organ failure and 5 minutes of flatline EKG I still have. Creatinine was 11:9 BUN 500. I was. Told everyday I would die that day for 5 months. I spent 4 months on a ventilator and 6 in the ICU. I should not have lived through that except for the loving grace of God. I was 29 in 1996 and my nephrologist who was my lifesaver passed from cancer 3 years ago but he never started dialysis because he thought I’d never recover any function if started.

Since I have been creatinine 3 and BUN about 22. No eGFR calculation for accessing damage in the mid-90s. First eGFR 12/2020 it was. 17 since it has been as high as 29 but that was past eGFR change recommended from NKF, ASN and NIKKD do we all got about 5 points of benefit when they removed race from the calculation. More importantly my comorbities especially the poly-osteoarthritis in all my joints that resulted in 22 orthopedic surgeries from ‘97-‘14 and the new issue of stage 5 idiopathic peripheral neuropathy from my hips down ( most likely caused by 26 years in stage 4 CKD) plus the COVID lockdown caused me to have to close my small business and give up employment as I am now totally disabled now. That resulted in homelessness for me, my wife and daughter in May of 2021. I am a Veteran so they helped much but due to all that upheaval stress and anxiety (GAD since ‘90) oh and probably my age of 55 has led to protein leakage. We know what that means = accelerated nephron destruction so I am having the same discussion with my nephrologist but with the closing early of the EMPA second study and the tremendous benefit shown of SGLT2s, especially Jardiance in the EMPA studies, with 0 occurrences of ketoacidosis and increasing eGFR 37% reducing proteinuria 48%, plus the heart, BP and weight lowering benefits reduces the chance of a significant CVD event in CKD patients more than 50% and the use in non-T2D patients as I don’t have diabetes. I am going that direction when i talk to my nephrologist in a couple of weeks. All the money allocated to our affliction in the last 7/8 years and the formation of KidneyX and KHI that has already led to 2 artificial kidneys ready to start FDA trials. I just need 3 more years without being forced on the archaic treatment of dialysis that carries an increased risk of a significant CVD event increase of 85% in people like me with the comorbities of HBP and hyperlipidemia plus (okay I am not a conspiracy theorists but I do significant research as I am housebound until we can but another vehicle I have the time and I have done the research because the studies are out there accessible through PubMed in US) I refuse to get the COVID vaccine or at least any COVID vaccine using the spike protein (Brownstone.org) for me dialysis is probably death.

I guess I related that because our experiences are so similar and yet you are the first person I’ve ever heard of who had such a similar experience. I wish you all my best in your quest for quality of life with CKD. Thanks for indulging my share!

[chicablue in reply to Blackknight1989]

Wow Blackknight, thank you for sharing! I never flatlined, but was in a coma for 3 weeks. The 27 surgical procedures I had were mostly reconstruction of hands and feet after amputations. Didnt know all the abreviations, but figured CVD must be cardio-vascular. Dont know if i put in my post I now have some congestive heart problem to go along with everything else. For that I take K2-MK7. I have decided not to do dialysis. I am so fed up with drs am actually thinking of going rogue without them. Had an apt with cardio this week, confirmed it online a week ago, show up, and they tell me my apt is not til next month. They changed my atp without telling me! They said well we texted you 3 times. Thanks alot you dummies, my landline does not accept texts and I dont do smart phones, I am 76 and hate technology! Why didnt they just email me??

Then my nephrologist decided to change offices and moved farther than we want to drive. So she sent me a letter to call and pick a different dr and make a new aptmt. I dont see what good it does for seeing her. She had to take me off Losartan because it caused hyperkalemia and said maybe my blood pressure wasnt bad enough to warrant b/p meds. But she gave me an alternative one to have in case it went too high. Well cannot take it, it makes my heart race. So I made the atptmt to ask the cardio guy to write a better b/p med for me. If I dont need medications and it's just a social call, why bother? The only thing I can see going to the neph for is if my red blood cell count goes too low, I can get Epo shots. My BUN has remained normal range, since I eat very little meat. My GFR is stable about 11.3

Maybe you can tell me something I dont understand is why the urine sample? What difference does it make if there is protein in it? I am not diabetic, and they always emphasized eat a low protein diet, which I do. So, if some protein is leaking out why is that a bad thing? I have gotten so disgusted with everything I refuse to try peeing in the cup anymore. I have one finger and I have better things to do with it! So they gave me a "hat" to pee in to make it easier. Well it wasnt. Then I had to figure out how to pour that into the specimen cup without spilling it, impossible to do with just one hand,

Thanks for the opportunity to vent and I hope I gave you a chuckle! I'm sorry about your disability, hope you can stay off dialysis too! Let's keep in touch, ~elaine (chicablue)

[Chimama in reply to chicablue]

hello can you tell me anything about epo shots? My red found low hemoglobin like around 9 thanks

[chicablue in reply to Chimama]

Yes, it's a synthetic hormone to get your bone marrow to produce red blood cells. Because I was over 50 miles away from my Dr, they gave me the prescription and showed me how to do the injections myself. They also sent a home nurse periodically to do blood tests. It worked great, really remedied the fatigue. Did that for a year or so, then didnt need it anymore. Of course I may need it again in the future.

[Blackknight1989]

Why are doctors like that . I consistently amazes me the stories I read on this site alone about doctors incompetent actions. I’m in the middle if that currently. My VA doctor has a new nurse with a 65 mile drive one way to work. She has decided I take too much of his time so at my last appointment she did not let me see him specifically because “he was too busy”. I told her my concerns and I needed my referral to my nephrologist ASAP. Had to go back next day for an ekg as she thought had Arterial Fibrillation and wanted an ekg on the first appointment which I declined because my anxiety was peaked for that day. Again would not let me see him. I attempted to make 2 phone appointments and she denied, anyway I had told her I was out of my meds as well. Now here I sit 3 months later no meds and still waiting on an appointment. My BP is not well controlled since my bout with COVID. My underlying cause of my CKD and resulting AKI is HBP as well as over ingestion of NSAIDS this you’d think they would be as concerned about BP control as I, well their actions tell me know. He is great but she is as lazy and worthless as t#ts on a boar hog. The reason for her not wanting me to see him is the time we spend together and she has that drive so she need to get home on time. She has to watch her shows! Anyway. It (now) no longer surprises me to hear what you related. Sounds like your nephrologist may be passive-aggressively pushing back against your decision not to start dialysis with the seemingly out of the blue decision to stop your BP meds with a stand by “in case it goes too high”. That sounds like a CYA statement not proper medical advice and a stupid move because if your not going to start dialysis then it would be beneficial to keep BP controlled to preserve remaining kidney function. But I’m not a nephrologist and apparently these are incredibly complex decisions….yea right.

Here is the issue with protein spillage as I understand it. With the indication of proteinuria that is direct evidence of active destruction of kidney nephrons. Less nephrons less function= closer to ERSD or death. See the protein molecules are by definition lager in size than nephrons. So when they are being excreated in urine all that made it to the urine were not cleaned properly by the kidneys and were not filtered but made a path through like bumper cars in an old fair ride destroying every nephron they encountered. Thus, for you they have the obvious implication of lowering what small amount of properly functioning kidney cell you have left. If you are not going to do dialysis this will hasten your death as opposed to NOT having spillage. The spillage is probably being made much worse by the discontinuation of any attempt to control BP. But I’m not a nephrologist so what do I know!

Most definitely let’s keep in touch. As I mentioned previous I have not encountered someone with such a similar situation to mine ever in 26 years. I understand the underlying conditions are completely different but the ICU hospital experience are very similar. Additionally, I am interested in whatever you are willing to share about not starting dialysis as I am not there yet but lean heavily that direction. With all my comorbities I am not eligible for transplant plus with the constant pain daily I’m not opposed to natural death. What concerns me daily is a significant CVD ( yes you got it that’s cardiovascular) event with my history of what must be familia hyperlipidemia and HBP that I will have one that leaves me brain dead and a complete burden on my family. With the recent developments of the severe wording of my osteoarthritis and development of the idiopathic peripheral neuropathy forcing me into a wheelchair and the only way to better quality of life is more osteoarthritis surgeries and all that leading to my total disability I question my purpose of living daily currently. While I assume I won’t know I’m brain dead I have no desire to place that burden on my family. It hurts me how gel get 75% dependent on them for tasks of daily living So my approach to my health has changed and I want to do all I can to postpone dialysis until dialysis is jade obsolete by all the new innovations in artificial kidneys. If all goes as planned that should be 2/5 years. For me specifically dialysis will destroy what little quality of life I have now and the chance of a significant CVD event within the first 6 months of dialysis is over 80% so I’m of your mindset on dialysis. I know I’ve got about 10 years of life left due to all the health issues I can live with less if quality is decent. Prolonging life for the sake of prolonging life hold no interest for me. I have been super blessed with 26 years of great life I most probably shouldn’t have lived to see. I have 2 tremendous kids now 25 and 20. The 20 year old most likely need me around another 5 years but they will both be good and my death won’t cause their great start at life to become derailed. I have been blessed with a spouse who made me into the best version of myself and allowed me to run a small financial planning business that helped hundreds of individual families life their dream life so I am satisfied. In fact if I had to live 20 years in my current condition it would take away all those wonderful feelings and blessings because of the burden I have become and the lack of contribution to life I offer. So it is important to me to make the correct decision on dialysis when or if my time gives. Please feel free to message me etc. further if you’d like we could trade personal emails/phone numbers at you direction. Meanwhile good luck with the day to day….not as easy as it used to be… take care!