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Kidney Dialysis
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Success and Relief🐶

My initial post in this forum focused on my current nephrologist only using in-center HD dialysis. I had been told by my former nephrologist that I was a perfect candidate for PD dialysis. Following much patient education while under his care as well as a lot of research on my part, I had settled upon PD dialysis as my treatment preference once I needed to begin dialysis.

I had to move to my current location this past summer. Thus I transferred to my current nephrologist last summer. In November I learned that my current nephrologist only prescribes in center HD dialysis for all his patients. And these treatment have to occur at a specific dialysis center that is only open three days a week. This would knock me out of work.

After hearing from so many of you, I followed your suggestions and began searching for another nephrologists; one who supports use of in home dialysis options including PD. I have found an entire practice of nephrologists who strongly support patient choice. A high percentage of their patients are on in home dialysis, either PD or HD. Nearly all the nephrologists in the practice are active in NKF. Several have been voted by other nephrologists throughout my city as the top nephrologist of the year and one has been selected by the nephrologists in my city as the top nephrologist of the decade from 2000-2010.

I've talked with the nurse at the dialysis center close to my house where I would be trained to administer PD dialysis to myself. I've also visited the dialysis center. And finally, I've verified with my insurance that both the nephrologists in this practice and the dialysis center are covered by my insurance. They are all covered🐶

So I've scheduled an initial consult appointment with one of the nephrologists in the practice for May 30, 2019. That is the date my next nephrologist appointment with the person I'm leaving was scheduled. I've had my records from my first nephrologist as well as the one I'm leaving sent to this new nephrologist in advance of the consult appointment.

So, barring a very bad consult appointment, I have found my new nephrologist. I'm truly thankful for your suggestions and support throughout this situation. I do have two other backup options for new nephrologists just in case this situation doesn't seem like a good fit. But I've got to say, this is the nephrologist practice that is by far the strongest of the three. So I am quite sure this is the solution🐶

Marj

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I'm glad you found a new doctor and center. I trust that you will find relief in doing home PD. I switched to it about 3 months ago and am very pleased with the results. Doing the manual exchanges is a lot of work but I feel so much better than when I was going for HD and I think my kidney function has improved a bit. I hope to get a cycler machine soon. Then, I can do the treatments art night while I sleep.

Keep us posted about your progress.

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This is such a major decision between PD and HD. I'm committed to PD at this point because it's supposed to be easier on your cardiovascular system, preserve remaining renal function longer, closer to the function of your real kidneys in that you are dialyzing daily, and can be done independently in my home without a care partner.

I am also still working full time and plan to continue doing this as long as possible. I've made some changes in my work responsibilities in preparation for dialysis this year--I have discontied all administrative responsibilities which has given me nearly 15 extra hours a week. BUT in-center dialysis would wipe out nearly half the work week for me. So the flexibility of dialyzing at home is really important to me.

Of course I won't know until I try it whether PD dialysis will work effectively for me. If it doesn't, I'll need to rethink this decision. But my current thinking is to start with the most workable option out of those available (based on my nephrologist's recommendation, of course) and hope for the best.

So, I'm curious, what were some of the reasons that you decided to switch from HD to PD? Also, I'm still on my employee health insurance. Dialysis will be paid in full after I've met my patient responsibility as long as the procedure is medically necessary. I did have to laugh when the insurance person said the procedure had to be medically necessary. Did she really think anyone would commit to dialysis if it wasn't medically necessary???

But I digress:) Is the PD cycler not coveted by insurance?

Thanks,

Marj

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Depending on the person PD will not give you the better numbers. I did it for 3 years and eventually went to HD. That was my experience and I was staunchly against HD.

I dislike HD only because I have to drive one town over and some days I can be drained.

However, on HD we dropped my hours to 3 per day because doing four was over dialysizing me as my creatinine was 4 and my urea was 40. Yes, there is such a thing as over dialysis.

Where most people BP goes down during dialysis, mine was going up during the 4th hour ultra filtration where water is removed.

My body does not react well to disturbing my water balance. That's why I only eat one time a day and watch my water intake to avoid them being forced to pull water aka edema.

I have residual renal function of about 10 to 12 even after 5 years of being on dialysis.

Always be an advocate of your health. They are doctors, not God and no one knows your body like you. However, you must be a steward of your health also.

Good luck and God Bless.

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Im glad in-center HD is working for you.

Marj

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Also note that PD will cause your veins so shrink. So if you dislike needles, have poor veins to begin with, then be prepared for major discomfort for routine bloodwork, which we must have monthly or daily in case of an infection.

It got to a point where they had to use ultrasound to find my veins.

Once on HD my veins returned to the surface.

Regardless, each has ups and downs and pluses and minuses.

Kidney transplant is the golden goose.

Dialysis is 99% mental. Stay positive and never give up.

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GOOD NEWS...

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So glad you switched!!

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Bunkin, I'm waiting out the first appointment now. It's scheduled for 11 a.m. on Thursday, May 30, 2019.

In the meantime I'm doing what I can to regain my strength. Thankfully I've been feeling consistently pretty good since early last December. So I have been exercising daily most days since then. At this point I can walk a mile a day and complete a light 30 minute workout on my recumbent elliptical machine. I'm planning to begin walking 1.5 miles a day on April 1st as well as increase from a light to a moderate workout on my elliptical machine in the middle of April. As the weather finally warms up I will be able to begin bike riding regularly. At that point I'll likely either ride my bike or do a workout on my elliptical machine daily as well as walk. The goal is to be walking 2 miles daily and do a moderate elliptical machine workout or ride my bike for 10 miles each day by the end of May🐶

Frankly, I've been in renal failure since early January of 2017 and am still not on dialysis. Much of that time I haven't felt terribly well. So I'm glad to finally feel enough better to be able to do some exercising again. My eGFR has risen over the past 6 months. It was initially at 8. My former nephrologist was able to pull it back up to 10-12. Then suddenly last December it came in at 19. It's been between 17-19 ever since. The nephrologist I'm leaving, my second nephrologist, does not see this as an improvement. Regardless, I'm definitely feeling better. So I'm going to use this time before I see my new nephrologist to regain as much strength as possible.

Marj

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Wow that is amazing. I started at 11, went up to 17, then down over the past 4 years. I was at 7 I’m January, went to 8 in March, phosphorus and potassium in range, Creatinine went down! That was fantastic for me. I’ve been trying to achieve that for awhile now. Prayers for you! God can do anything 😀

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So are you on dialysis at this point? Also, how are you feeling? Great news on your potassium and phosphate levels! I can struggle with potassium as well. It can be tough to keep everything in check.

Marj

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No I’m not on dialysis. I thought after January labs for sure I would be because they were so bad, but they got better. My main problem is fatigue. Also my back gets tired and I also have low back pain. But most days I feel ok!

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Yes, I get low back pain some days too. I'm also sometimes dizzy; my blood pressure drops when I Stan up, etc. my cardiologist had me start wearing support socks which has really helped with the lower back pain and low blood pressure issues. but otherwise I feel pretty good now too.

How long have you been in renal failure?

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Not sure how long. Was told I had PKD in 2003 but nothing could be done, so I ignored it. Then in 2015 went to Er for diverticulitis. Was told my GFR was 12 and needed to see nephrologist. Started on a program, went to neurologist in feb 2016. So I have no idea how long I’ve been in this stage. I’ve never been sick really. Doctor thinks I will go on dialysis this year. I was preparing myself for it last visit but then my numbers improved! God is amazing 😀

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I was told 2 years ago when GFR was 22. I was told to “not worry”! So I didn’t control diet. You can postpone dialysis by taking on severe monitoring, no booze and limited liquids. Two weeks ago I was told by same doc that dialysis was imminent. I was angry. Now I will stay off dialysis as long as I feel ok. On my own I bought pressure socks.

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I've been in renal failure since January of 2017. Initially my renal function was worse, i.e., creatinine 4.65 and GFR 8. About a year ago my data improved to creatinine 3.35 and GRF 15. Over the past 4 months three of my four renal panels have come in with creatinine ranging from 2.58 to 307 and GFR ranging from 19 to 16 (which is the lower third of stage 4 rather than high stage 5. The fourth renal panel came in with creatinine 3.35 and GFR 15 so the very top of stage 5.)

Clearly, my kidneys are showing some additional., modest improvement. I'm hoping my new nephrologist will decide to restage my CKD from high stage 5 to low stage 4. But only time will tell on this issue. I won't see my new nephrologist for the first visit until May 30th. In the meantime, I'm absolutely feeling and functioning MUCH better. That is certainly a good thing.

Two of the three nephrologists who have looked at my data (which includes a biopsy) think it could be 2-3 or even 4 years before I'll need dialysis. The nephrologist I'm leaving is the one who thinks dialysis is imminent. However, he also does nothing with medication to deal with elevated potassium, etc. So, I'm convinced he's not terribly good.

In the meantime, like you, I'm certainly not planning to rush into dialysis early either. Other then my creatinine, GFR, and BUN, my renal panel data looks good, i.e., everything is in the normal range. My severe anemia us under effective treatment. I'm not retaining fluid and so am not taking any diuretics. In fact, I'm only taking medication for my severe anemia only; no other medication to support my renal function.

I have orthostatic hypotension rather then hypertension. They are not using medication to treat that now. But I just tried support/compression socks. They have made an incredible improvement with my low pressure-related symptoms. So, frankly, I'm feeling and functioning fairly well.

I do follow the dietary and fluid restrictions religiously and will continue to do this. I'm sure this helps.

Well, thanks for your response.

Marj

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How did you manage to raise your GFR? That’s amazing!!

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I'm actually not sure. Two of the three nephrologists who have looked at my data think this is happening because my blood pressure is no longer running so extremely low. It used to be no better than 82/50 and wold also suddenly plummet from that to 58/38 or even a little lower. It would do this plummeting 4 or 5 times a day every day of the week. Incredibly, I never fainted. At that time I was prescribed a blood pressure medication AND a diuretic. I was extremely dehydrated all the time, e.g., my elbows were continuously cracking open. I wold pour lotion on them, to no avail. At that time I was also placed on fluid restrictions.

So, all in all, I was in a choric state of severe dehydration. Now that I'm no longer taking the BP medication or the diuretic and have less of a fluid restrict, I stay better hydrated. My blood pressure is much better. The only issue I've got with it now is the orthostatic hypotension, it drops some when I stand up. But wearing the compression socks has solved most of these symptoms. It turns out that the low and suddenly plummeting blood pressure was causing most of the major symptoms I was experiencing.

They've done lots and lots of testing to try to figure out what's going on with my renal function. The tests haven't uncovered anything other then the type II diabetes that caused this to begin with. However, my A1C is totally normal now with no medication. It took me three months to get that pulled down into the normal range. It's been there consistently ever since. (That's since April 1, 2011.) And, again, this is with no medication. My A1C typically comes in at 5.2 now. So they are convinced the diabetes is NOT causing this deterioration.

My first nephrologist did NOT think my BP was low enough to be causing this problem. However, he was the one who had me taking a BP medication, a diuretic, and on fairly notable fluid restrictions. Clearly, that part of my treatment plan while under his care was not effective and may have actually caused the deterioration that has occurred with my renal function.

I left him a little over a year ago. Since leaving him I've been taken off the BP medication and the diuretic. I am now supposed to drink 60 fluid ounces a day. (I drink water only). My BP is in a MUCH better range. I also no longer experience the extreme sudden plummeting BP.

I finally saw a cardiologist last October. He diagnosed the orthostatic hypotension. From what I gather, that was what was causing all the havoc with what my first nephrologist was doing to "lower" my BP. Overall, my cardiovascular health is still in good shape although it is beginning to show some strain from me being in renal failure since January of 2017. The cardiologist said that either a transplant or dialysis would resolve this strain though.

Both nephrologists (the one I'm leaving as well as a colleague of his to whom he sent me this past February) believe that my renal function has improved some do to the increase in my BP. Although neither has spoken extensively about this issue.

So, I'm really not sure what's going on at this point. I just know that Im feeling and functioning a lot better. Now that I'm also wearing support socks I'm actually feeling quite well.

I just had my April renal panel last Friday and so am awaiting the data now. I'm hoping to see another renal panel with data up in low Stage 4 again. Regardless, I'm truly thankful to be feeling and functioning so much better.

Clearly, I'm not thrilled with the renal care I've received to date. But I've done my homework regarding the nephrologist to whom I'm shifting at the end of May. He's definitely one of the tops in the metro area where I live. He also works in a practice that contains all of the nephrologists voted by all the metro nephrologists as the best in the metro area for 18 out of the past 20 years. This practice is also affiliated with the transplant center that has outcomes ranking them as one of the top 10 centers in the nation. So, I believe these nephrologists know what they're doing. Plus they've got excellent patient satisfaction ratings online. I'm guardedly optimistic at this point:)

And finally, as I've worked with my two previous nephrologists, they have both handled parts of my care well. Thus, I'm taking the best from both and pulling it together. I'm gradually getting this figures out, it think:)

Marj

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