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Kidney Disease
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High Creatinine at 8.0

Just new labs, creatinine jumped from 7.0 to 8.0, GFR now at 7, access surgery schedule 1st week in Jan. I now get labs weekly.

My question is why I don't feel the symptoms of ESRD. I fatigue after standing too long but I attribute that to a Hgb rate of 8.6, feel okay when taking procrit, which I haven't needed to do in 5 weeks (had readings of over 11). Is there anyone who as experienced this situation. I fear with worsening GFR I will end up in the hospital prior to getting PD catheter. Should I consider moving up the PD catheter surgery,

Thanks,

Fleo

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Hi Fleo

My gfr was 7.5 and had no symptoms other than the odd day of feeling sick and being tired. I had my fistual done in june 2017 with a gfr of 7.5 in preparation. Its better to have the surgery done ready and then it stops emergency lines and gives things times to recover. I opted for home hd as pd wasnt an options due to my small body frame and low weight. My symptoms didnt kick in until I got to 4.5 which was July this year, with fluid overload and poor sleep and nausea. Still no dialysis, but a change in medication which really helped. I'm now at gfr of 3.5 and starting dialysis in January. Currently having training for home HD.

I'm glad I had my surgery early when I was still doing ok. I have an excellent doctor he looks at my labs but also listens to how I feel.

It's not just about your gfr, they will look at your urea, phosphate, potassium and sodium levels.

Have you started epo injections or iron infusions?

Your doing well Fleo and you know how your feeling. Having the surgery doesn't mean you have to start dialysis it just means your ready for when it's needed.

Charlene

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Charlene, thank you for your encouraging and helpful response.

Your path serves as a guideline that I want to take, be informed, be prepared and be honest with myself about the need to start dialysis that I know is going to be needed.

My doctor who I'm meeting today is a bit old school and I respect his viewpoint that it is better to get started with dialysis and avoid all the potential problems with getting caught flat footed when the need for dialysis arises. That may be correct medically but if I have 9 mos, 6 mos, 3 months that I can delay starting dialysis but still feel normal, that is what I am gong to do and enjoy every minute of it.

I got labs on Fri (I'm now get a weekly labs done). Sodium 134, Potassium 4 .9, Creatinine 8.0, BUN 78, Phosphorus 5.2, Calcium 8.7, Hgb 9.1, PTH 78, Albumin 3.4, GFR 7

I honestly feel pretty good, I do get a bit tired if I exert myself but I don't know if that is from the low Hbg or CKD, probably both. I still operate my various businesses and work a full workweek plus. Driving (5+ hours) to New York tomorrow on business. So far CKD has not been disruptive in my life other than going to doctor, getting labs and mentally thinking about it.

Your email encourages me that there are many people that function with ESRD and a low GFR, it's hard to get that input from on-line. I search and search for that trigger point when you know you have to commit to dialysis, but there is no magic formula. I've done about all I can from a dietary standpoint, controlled diabetes (A1c 5.6), etc., though I don't exercise enough

I do have anemia and took EPso shots (Procrit) weekly, then bi-weekly for over a year, then started taking a Blood builder and have averaged Hbg around 11.4, so no EPO shots but my last lab came in at 9.1 shot I'll probably get a shot today.

What kind of nephrology medicines did your Doctor give during your ESRD? I've been going to a Nephrologist for over 5 years and I take a diabetes med, hypertension meds, and TUMS (recently for elevated phosphorus and that's working), no other meds so I'm curious of any options. Also considering a 2nd medical option on a plan, my Doctor is semi-retired so may not be up on the latest.

When you started getting symptoms was it a slow progression or did it start and get worst quickly.

Regards,

Fleo

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Hi Fleo

I was at 7.5 for 18months but I was put on diuretics as I was holding fluid a lot so was also put on 1000mls restriction and then it dripped from 7.5 to 4.5 in 10 days which was a surprise and I had 8kilos of fluid overload so restricted down to 650mls and doubled dose of diuretic. I actually lose potassium so on a potassium supplement and Alison weekly app injections and 6monthly I have iron infusion.

I was also advised to avoid potatoes as causing increased phosphate so I haven't had potatoes for 6months, I'm allergic to dairy but know I was told to restrict that but that was never an issue for me.

Obviously this is individual to me and each case is different so best talk to your consultant before making any decisions. They estimated I needed dialysis in 2009 so I'm 10 years further than ever imagined.

You don't have to go mad with exercise just a gentle walk will do.

I would say get ready by having the surgery and then just keep doing what your doing. I've had an extra 18months since my fistula so there is no harm in being ready it just sits there doing nothing.

The sudden decline did hit me hard I can't lie as I was like you doing ok and then bang it hit me. I think the problem is we get use to the slow decline and I can't remember what normal is but you just get on with what you have. I'm 38years old and was 20 when diagnosed. Do you mind me asking how old you are.

Keep fighting a good fight, dialysis sounds scary but it will be ok. Are machines just need a bit of help and I'm imagining that now I'm feeling the effects of the disease I will feel better as the machine will get rid of the toxins we can't.

If you ever want to ask me anything feel free to message me privately if you prefer.

Take care

Charlene

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These are ideas from someone who has a GFR of 15, is on Procrit and just getting over 12 years of cancer. I was a tired old man (73) with low energy. I talked to my nephrologist before I did any of this, but here it goes. My CBC showed problems that no body ever looked at. My Vit B 12 was low, so I took 2000IU under the tongue and my levels increased with my energy levels. Also, my Vit D3 was very low even though I was taking 3000 IU daily. So he gave me a prescription of Vit D3 50,000 IU once week for 13 weeks. The kidney sends calcitriol throughout the body and the blood stores this up, but my storage was empty! So now I feel better again. I was snoring at night with sleep apnea and I got a CPAP machine. Now I awaken refreshed, and I use it when I nap. I meditate daily for 20 minutes (I use an alarm clock) and this keeps me "centered". I'm not ashamed to tell you I go to church and have many new friends. So just see if one of these ideas can help you feel young and wonderful again, I feel about 10 years younger. It wasn't my kidney disease, it was other things making me tired.

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join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://www.facebook.com/groups/naturalkidneyjourney/?epa=SEARCH_BOX answer the 3 questions when you click on the site to join or you will automatically be deleted...

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