Reversed

[Munf]

Not a question really.. just seeing who else is out there. I'm stage 5.. Does anyone else find that through the day they just want sleep but, start to wake up towards the evening. It's like I'm a vampire 😂 . Anyway, just curious.

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When I get a full exercise routine or bike ride in there is usually no problem for me to get a good nights rest. However, over the last three months, since my gallbladder has been causing problems I don't sleep as long or as well and have to take a short nap or two during the day. The surgeon tells me that this isn't that unusual and after the cholecystectomy, my sleep patterns should return to "normal."

I've heard that others have sleep issues due to frequent urination. Could that be an issue for you?

[Jayhawker]

I’m Stage V too. I had begun having the same problems you mention even when I exercised during the day. My BUN had elevated to 73. (I’m not yet on dialysis but have been in renal failure since January of 2017 so my BUN has gradually crept up over the past 3 years.)

My nephrologist said my BUN was likely what was causing this issue. His nurse practitioner encouraged me to convert to a vegetarian diet this past July. I had a renal panel about 2 1/2 weeks after I started the vegetarian diet. My BUN had dropped from 73 to 55. And my sleep patterns had improved. They are much more normal now. I have another renal panel this Wednesday. I’m hoping to find that my BUN is still no higher than 55 if not even lower. I’m also hoping to see that my potassium is still in check. If so, I’ll be pretty convinced the shift to a vegetarian diet has been a good option for me.

Jayhawker

[Dixidude39 in reply to Jayhawker]

Jayhawker, didn't know (or missed in prior posts) that you are Stage 5. With one remaining kidney (eGFR of 27), I could land in Stage 5 should I get cancer in this remaining kidney. HD looks to be quite a challenge. Get fistula first. Based on a friend's experience, HD can lead to other health problems (landed him in the hospital several times). Not sure what I will do if I lose my left kidney.

[KidneyCoach NKF Ambassador in reply to Dixidude39]

I'm also in stage 5 having been on dialysis almost 18 years. HD can lead to other health problems. Heart disease and sepsis are the top two causes of death for kidney failure patients so it's important to keep on top of these issues.

I've had chronic insomnia for about 25 years, which has become my norm. I try to avoid using any phones, computers after 5pm. Try to keep a winding down routine like take a slow walk, dinner, a bath, reading etc prior to bedtime. Sometimes it requires a strict routine to reset internal clocks. Melatonin or Valerian even lavender scent with hops can be beneficial. Please clear them with your Dr prior to using them. With all that said insomnia is fairly common with stage 5 patients.

HD/renal failure is TOUGH. So prepare yourself in all ways possible. Try kidneyschool.org for more information. Many Blessings

[Munf in reply to KidneyCoach]

My egfr is 11 and I'm having meetings for pd dialysis. I have just spent the last three weeks in hospital so part of me wonders if I'm still recovering or a mixture of the both. awaiting to see my nephologist who has been on holiday for for the past few weeks when she went away my egfr was 18% and then it dropped to 11% . All the other Drs were Fab but I feel more at ease with my regular Dr.

[Stephene10 in reply to KidneyCoach]

Hey man,18yrs? Too much I empathize and willing to donate my kidney to you if you need it.

[KidneyCoach NKF Ambassador in reply to Stephene10]

You are too kind. If you want to donate consider signing up as a living donor at your local transplant center. I'm quite certain you could give life to someone close. I was listed for almost 10 years but my antibodies are too high. Blessings

[Dixidude39 in reply to KidneyCoach]

KidneyCoach … wow. 18 years on HD! I feel blessed to have been age 75 when my right kidney was removed due to cancer. I am now CKD4 with an eGFR of 27. Please clear up something regarding HD. Assuming you have a fistula or a graft, I would think the area where needles go in with each treatment would be mighty sore. Also, during treatment, do you read, watch TV, or something else? And, do most dialysis centers have back-up generators in case of a power outage?

[KidneyCoach NKF Ambassador in reply to Dixidude39]

I do have a graft yes. Many patients use numbing cream or lidocaine. I've never used them. Surprisingly the needle sites do not become sore. For me the only pain is when someone causes an infiltration (needle goes through the vessel and exits out a wall causing blood to leak out into surrounding tissue). Infiltration can be painful. They usually use a rope/ladder technique to rotate so a different spot is stuck each time. Many establish buttonholes sticking the same spot each time creating in essence a spot similar to an ear piercing. Once established "blunt" not sharp needles are used so essentially pain free. Grafts generally cannot use buttonholes. Grafts are unable to heal after a needle stick so using buttonholes would cause failure of the graft quickly.

Needle sixes also vary from 18 (smaller) to 14 (very large) and everything in between. Size of needle will be dependent on type of machine, access, time, adequacy of treatments, blood pump speed and more. Years ago I used 15 gauge for my fistula. Now I use a 17 gauge and for this graft it will never change.

I read, watch movies, use a laptop or tablet check email etc. I am unable to sleep during treatment. Most with arm accesses need to keep that arm fairly motionless. This can cause pain if it's an unusual position. The muscles need to learn to stay still so it can cause muscle spasms. If moving arm this can cause an infiltration which is painful and VERY painful for treatments afterward until healed. Whenever I had catheters and the use of both arms I would do embroidery, knitting, play games on Nintendo DS and more.

Sadly most centers/clinics do *not* have backup generators and by law are not required. During power outages and emergencies this is a critical time for patients. The clinics will arrange for treatment at other available facilities and even transportation if necessary. Check out KCER website for emergency preparedness and more. It stands for Kidney Community Emergency Response. I've worked with them on a number of projects as an SME subject matter expert.

Hope this helps

Blessings

[Jayhawker in reply to Dixidude39]

I’m definitely planning to try PD dialysis first. If that doesn’t work I’ll need to consider HD dialysis. I’m doing my best to postpone dialysis as long as is medically safe. But it is inevitable. When my nephrologist tells me it’s time, I’ll be ready to transition to dialysis.

Jayhawker

[Bassetmommer NKF Ambassador in reply to Jayhawker]

Hi Jayhawker,

Your reply is intriguing to me. Why do you thing an elevated BUN causes sleep issues? I am not very knowledgeable on what BUN is to being with. Let me run this by you to see if I am understanding. it is a measurement of urea nitrogen and it is relative to protein levels...correct? So by eating less meat, it should drop....correct? So you think that a higher level is cause sleep issues? Why would that be?

I know my level dropped when I went mostly veggie. But it has steadily crept up there in the year. It is now at 35. That is with a low protein diet. My nephrologist also said to take B6 to help with that. Just wondering about the correlation to elevate BUN to sleep.

Thanks.

[steve680 in reply to Bassetmommer]

I'm stage 5 and BUN is the number that mostly closely describes "how you feel". Earlier this year my BUN was as high as 110 and I felt like crap. After moving to a more veggie-based diet my bun came down to 55 and I feel better. Creatinine is still high though. This is why nephrologists tell their patients to restrict protein when in stage 5 but not on dialysis.

[Jayhawker in reply to steve680]

steve680,

This is consistent with my basic, layperson's, underfunding of why my BuN created excessive sleeping and lethargy in me. I'm supposing we each respond a little differently to elevated BUN but would, in general, think that elevated BuN would cause all of us to feel pretty poorly.

While off dialysis were you (or have you if you're still off dialysis) been able to lower your BuN further by decreasing your meat protein intake?

Jayhawker

[steve680 in reply to Jayhawker]

I switched to a more veggie-based diet, but still eat some meat. One change I made is to eat egg whites instead of eggs as they have less protein and less phosphorus.

[Jayhawker in reply to Bassetmommer]

Actually, it was my nephrologist and his nurse practitioner who both said that my increased BUN was likely causing my excessive sleep and lethargy throughout the day. My BUN was markedly higher than yours though. Mine was 73 and had been running that high for several months. i did not experience those symptoms until my BUN was in the 60s.

Frankly, I had expected to hear that the lethargy throughout the day was due to my severe anemia. But my hemoglobin was coming in at 11.4 so clearly my lethargy wasn’t due to anemia. At this point I’m just very thankful to be sleeping much more normally and not excessively lethargic throughout the day.

I see the renal nurse practitioner on Sept 9th. I had planned to talk with her about this during that appointment; I’d like to have a greater understanding of this situation myself as well. Regardless, I’m definitely experiencing a significant improvement in this issue.

Jayhawker

[Bassetmommer NKF Ambassador in reply to Jayhawker]

Thanks for the info and let me know what you discover. There is so much to learn about CKD.

BTW, I too had anemia and was prescribe OTC iron. I took it for less than a year, and stopped So far, things have stayed stable and that is because I think I eat a lot of greens. I have to watch potassium. It is a trade off.

[Jayhawker in reply to Bassetmommer]

My anemia is pretty severe; without medication my hemoglobin is 5.6. I’m extremely winded and sleep nonstop, etc. procrit helped some but they shifted me to a different medication that is actually a phosphorus binder called Auryxia, I take 3 210 mg tablets a day. It’s an iron medication. It has been a major game changer for me. No more procrit injections. And it keeps my hemoglobin pretty stable between 10.5 and 11.2.

Jayhawker

[KidneyCoach NKF Ambassador in reply to Jayhawker]

I've heard many great things about this binder. Glad it's helped you as for BUN it is blood urea nitrogen. It is the most simple and easiest toxin removed during dialysis. HTH. Blessings

[Jayhawker in reply to KidneyCoach]

That’s my understanding about BUN. So I suspect that when I do start dialysis I should be feeling better. And, yes, my first nephrologist shifted my to auryxia several years ago. He was right; it has worked very well for me. That has been a major blessing as my anemia was already very severe even when I had an eGFR of 32. I’m not sure I could still be working if he hadn’t tried this medication with me🐶

Matj

[Dixidude39 in reply to Jayhawker]

Jayhawker … my phosphorous is on the high side, and so I will research the binder you mention before asking my nephrologist. Also, having read the book on how to avoid dialysis by the Johns Hopkins prof, I am supplementing my low protein diet with essential amino acids, supplements I take am and pm.

[Jayhawker in reply to Dixidude39]

What is the name of the book you mention? And, yes, I gather that if I’m not careful with the vegetarian diet, ie, I don’t eat enough “complete” vegetable proteins, that I won’t have enough amino acids in my diet. Thus my concern that I may not be eating enough of the “complete” plant based protein options.

I’ve just figured out a better way to cook tofu🐶 So I’ll now aim for a serving of tofu daily. I’m also eating a serving of egg whites daily. I can’t wait to see a renal dietician on Sept 24th ...

Regardless, I’m definitely feeling better no longer eating meat based protein.

Jayhawker

[Dixidude39 in reply to Jayhawker]

The book is titled "Coping with Kidney Disease, a 12-Step Treatment Program to Help You Avoid Dialysis" by Mackinzie Walser, MD.

[Jayhawker in reply to Dixidude39]

Thanks!

[Jayhawker in reply to Dixidude39]

I just learned in my most recent nephrologist’s appt that while auryxia is a phosphorous Bindeman it’s a weaker bi see than other options.

Jayhawker

[SN23 in reply to Dixidude39]

What amino acid supplement do you take? One that my son’s neph approved is called Ketorena. His diet is also plant based.

[Dixidude39 in reply to SN23]

SN23. I started with the amino acid tablet sold by Vitamin Shoppe, but when I needed additional product, they were out-of-stock. So, I went to Amazon.com and ordered ON Superior Amino 2222 Tabs. The only downside is the size of the tablet. It is pre-scored for splitting, but not sure it would suitable for a child. Amazon has other essential amino acid products.

[SN23 in reply to Dixidude39]

Thanks so much.

[rabbit01]

I am at stage 5. Just 8% left. Are you in UK?

[Munf]

Yes, I'm in the UK

[CaseySam]

Hello! I'm at stage 5 about 14 gfr and I watch the sunrise every morning....can't sleep which is why it's 2:41am and I am writing to you. I keep falling asleep during the day and absolutely feel like I'm in a fog.

[rabbit01 in reply to CaseySam]

I guess I have been lucky as even at my current 8% eGFR I am still sleeping pretty well. My decline from 14% to where I am now took about 18 months so I assume the slowness of it helped the rest of my body adjust. I actually feel and sleep slightly better at 8% than I did at 12% so go figure that one out! The human body is so complex and even with all our clever medical science we are still nowhere near understanding how it all works and the true relationships between the various organs. Well the best of luck and I hope you get some rest.