Stage 3 CKD

Posted by rozalia @rozalia, Aug 24, 2016

My primary says I do not need to see a kidney specialist. Is this true. My blood chems are ok.

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@marvinjsturing

@kamama94 In the past 4 years my eGFR has ranged from 10 to 17. At the recommendation of my nephrologist, I had the fistula surgery done 3 1/2 years ago. Still not on dialysis yet. If my eGFR was 33 and holding steady, I would not have the surgery. If it was dropping, I would begin thinking about it, but would probably wait until it was lower. That's my opinion.

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@marvinjsturing, thank you very much for sharing this. Neph was thinking if there was a sudden drop or an emergent situation they'd have to access the vasculature in my neck, which even though I'm a nurse I think is pretty drastic and wouldn't want to have to go that route. But I was thinking ig my eGFR stays at 33 or even improves, I might be able to wait awhile. When you had your fistula surgery, was it outpatient? Did you have to do dressing changes or was it "bandaid" surgery? How long did it take to do it and how long did it take to heal and "ripen"? Is it uncomfortable for you now? Sorry to pester you with more questions but I appreciate your input. Thanks again.

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@kamama94 My surgery was done as an outpatient. It was done 3 1/2 years ago. I don't remember having to change any dressings. I went back to see the surgeon 4 months after my surgery. At that time, he told me I had to continue "exercising" the fistula, but it really didn't grow much after that. Mine is in the upper left arm. I was told that the first choice is in the lower arm, but the veins in both of my lower arms were shot from all the chemo I received. Most of the time, it doesn't bother me. Once in a while, it feels like it is pressing on the muscles in my arm. The one thing I didn't expect was that in order to protect the fistula, I cannot wear my watch on my left arm and you are never supposed to draw blood or take your blood pressure using that arm. Because the fistula is in my left arm, I am not supposed to lay on my left side when I sleep at night.You are supposed to check it every day to make sure there is a thrill or a pulse. With mine, I can look at it and see it pulsing. But when you put your hand on it, you can easily feel the thrill. (I have no idea why it is called a thrill, but I like to say that dialysis nurses get a thrill out of feeling my arm.)

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@marvinjsturing

@kamama94 My surgery was done as an outpatient. It was done 3 1/2 years ago. I don't remember having to change any dressings. I went back to see the surgeon 4 months after my surgery. At that time, he told me I had to continue "exercising" the fistula, but it really didn't grow much after that. Mine is in the upper left arm. I was told that the first choice is in the lower arm, but the veins in both of my lower arms were shot from all the chemo I received. Most of the time, it doesn't bother me. Once in a while, it feels like it is pressing on the muscles in my arm. The one thing I didn't expect was that in order to protect the fistula, I cannot wear my watch on my left arm and you are never supposed to draw blood or take your blood pressure using that arm. Because the fistula is in my left arm, I am not supposed to lay on my left side when I sleep at night.You are supposed to check it every day to make sure there is a thrill or a pulse. With mine, I can look at it and see it pulsing. But when you put your hand on it, you can easily feel the thrill. (I have no idea why it is called a thrill, but I like to say that dialysis nurses get a thrill out of feeling my arm.)

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A couple of year ago, my wife temporarily needed dialysis after her heart valve replacement surgery. She had it done in her neck. I am glad I have my fistula, because after watching her, I don't want it done in my neck.

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My husband's tunnel catheter was in his upper right chest, not neck. It had to be kept dry and the dressing changed each time of dialysis, but it was not painful. It is supposed to be a temporary solution when dialysis is needed and there is no fistula. At the time they put it in (March 2017), they did not expect him to live very long. In June of 2017 he was put on Keytruda, which has kept the cancer at bay – it truly is a miracle drug.

His fistula was put in last June. The operation did not take an hour or so, and was outpatient. They did not start using it until November.

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@gaybinator

My husband's tunnel catheter was in his upper right chest, not neck. It had to be kept dry and the dressing changed each time of dialysis, but it was not painful. It is supposed to be a temporary solution when dialysis is needed and there is no fistula. At the time they put it in (March 2017), they did not expect him to live very long. In June of 2017 he was put on Keytruda, which has kept the cancer at bay – it truly is a miracle drug.

His fistula was put in last June. The operation did not take an hour or so, and was outpatient. They did not start using it until November.

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Thanks, @gaybinator. Sending you both positive thoughts.

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@kamama94

Would like some feedback. Not medical advice, just patient opinions from other CKD people. I've moved back into stage 3 CKD and am feeling quite well but neph wondered if I should go ahead and have the arterial-venous access graft surgery some time this year in case dialysis becomes necessary sooner than we currently think it might. I asked my neph to refer me to another neph for 2nd opinion and am in the process of getting an appointment for that consult. I don't want to put anyone on the spot but here's my question: would you go ahead and have the graft done if your eGFR is 33 and your BUN and creatinine are coming down closer to "normal" (but still high) or would you wait and see if your kidney function improves some more? I'm not asking for diagnoses or medical advice, I just want to know what others in my situation might do. Thanks!

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@kamama94 My opinion for the arterial-venous access graft surgery is to wait if you are basing it only on your test results. My first step would be to ask your current nephrologist why he is making this suggestion at this time. What basis is he using to support this suggestion? Is there something other than test results? If so, what is/are it/they? I have been stage 3 CKD since 2013 and holding. I think dialysis is always on the list of things to consider once you reach stage 3 CKD. Keep us posted please. Blessings.

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@kamama94

Hi, all. I just need to vent a little. Last week-end I started coming down with a cold. By Monday night my airway was shutting down so a friend called 911 and I went to the hospital per ambulance where I was admitted from ER.

By the way, the local hospital, which is affiliated with a state university teaching hospital, offers a renal diet for inpatients with CKD but some of the offerings were outdated and better choices were unavailable on the menu but all in all it was a good kidney-friendly diet so kudos to my "small" city hospital. I did share some of my research with the hospital dietitian and she will be "tweaking" the hospital's renal menus.

I'm home now and doing much better but because I'm temporarily taking prednisone for my COPD and Combivent inhaler, my blood sugars are high when they had been so well-controlled at home before this episode. Both albuterol (in Combivent inhalers) and prednisone tend to interfere with insulin absorption which results in elevated blood sugars so I'm hoping this is a temporary setback which will resolve once I've finished the post-discharge meds.

I'm also hoping that the drop in my GFR from 37 to 35 while in the hospital is temporary. It's possible that the slight GFR drop is related to the viral load of the upper respiratory infection and will come back up once I have finished the COPD exacerbation meds and can improve my renal vegetarian diet a bit after that.

Also my BUN and Cr elevated slightly while I was in the hospital. They tend to be high anyway and I can't seem to get them down much. I'm not on any fluid restriction and I do drink about 6 8-oz glasses of water a day plus other fluids but this doesn't seem to have much effect. Any suggestions as to how to lower both the BUN and the creatinine would be appreciated.

I just wanted to share some of my frustration. Thanks for listening to me gripe.

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@kamama94 Regarding your elevated BUN and Cr, my doctors recommend drinking 2-3 liters daily. This equals 70 to 100 ounces. I have a 20 ounce travel mug I fill a minimum of 4 times daily. 80 ounces is about 2 1/2 liters. A better check to see if you are getting enough fluids is to check your urine. If it is clear or very light yellow you are good. The darker yellow the less hydrated you are. If it is near orange you are probably in or near to crisis. Blessings.

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@2011panc

@kamama94 Regarding your elevated BUN and Cr, my doctors recommend drinking 2-3 liters daily. This equals 70 to 100 ounces. I have a 20 ounce travel mug I fill a minimum of 4 times daily. 80 ounces is about 2 1/2 liters. A better check to see if you are getting enough fluids is to check your urine. If it is clear or very light yellow you are good. The darker yellow the less hydrated you are. If it is near orange you are probably in or near to crisis. Blessings.

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@2011panc, last labs show BUN & creatinine coming down. Blessings to you also, thanks!

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@2011panc

@kamama94 Regarding your elevated BUN and Cr, my doctors recommend drinking 2-3 liters daily. This equals 70 to 100 ounces. I have a 20 ounce travel mug I fill a minimum of 4 times daily. 80 ounces is about 2 1/2 liters. A better check to see if you are getting enough fluids is to check your urine. If it is clear or very light yellow you are good. The darker yellow the less hydrated you are. If it is near orange you are probably in or near to crisis. Blessings.

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@2011panc, good idea, I drink 60 oz a day, urine pale yellow, so hydrating ok. Neph said she thought it would be better to have the AV access and not need it than to need it and not have it.

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@marvinjsturing

@kamama94 In the past 4 years my eGFR has ranged from 10 to 17. At the recommendation of my nephrologist, I had the fistula surgery done 3 1/2 years ago. Still not on dialysis yet. If my eGFR was 33 and holding steady, I would not have the surgery. If it was dropping, I would begin thinking about it, but would probably wait until it was lower. That's my opinion.

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@marvinjsturing Wow, what a journey you have had. Please tell us how having a fistula surgery that long ago without using it has changed your life. I am curious to know. Thank you!
Ginger

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@kamama94

@2011panc, good idea, I drink 60 oz a day, urine pale yellow, so hydrating ok. Neph said she thought it would be better to have the AV access and not need it than to need it and not have it.

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@kamama94 From what I am reading in these posts, it sounds like most people are against the idea of a fistula graft at this time. One thing to question to your nephrologist is if their family member came to them with their doctor telling them the same thing that she is telling you, what would she advise? You have had some very good input from others of why your doctor thinks this is a good thing to do now. I'm all for handling medical issues but needless medical procedures are not in my wheelhouse! I have been stage 3b for over 5 years, eGFR ranging from 32 to 40, and would not agree to graft or port placement at this level.
Ginger

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@gingerw, this is why I told her I wouldn't consider it until I had a 2nd opinion. I also want to run it by my primary, who is extremely knowledgeable about such things.

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My understanding is that a fistula and a graft are two different things, with the fistula preferred. https://www.azuravascularcare.com/infodialysisaccess/types-of-dialysis-access/

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@gingerw

@marvinjsturing Wow, what a journey you have had. Please tell us how having a fistula surgery that long ago without using it has changed your life. I am curious to know. Thank you!
Ginger

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@gingerw The biggest changes are diet and energy level. Ten years ago I was diagnosed as a Type II diabetic. After a long learning curve, I adjusted well to the diagnosis. Through exercise, diet and metformin, everything was under control. I actually enjoyed the foods I was allowed to eat. Then came pancreatic cancer and complications from the chemo. Now I am a Type I diabetic and have stage 4/5 CKD. I've had to give up a lot of the foods that I have enjoyed. I have to watch my intake of phosphorus, potassium and sodium. I try to balance my diet between CKD and diabetes. Maybe I would do better if I watched my diet better, but I've decided that I am also going to enjoy my life. I take lots of meds to compensate for what my kidneys can no longer do or to slow down the deterioration of my kidneys. My nephrologist suggested that I look into a kidney transplant. I wondered if I wanted to go through that since things have been holding steady for so long. She reminded me that I have been on the edge of needing dialysis for a long time and anything could push me over the edge at any time. I was evaluated at Mayo Rochester last August and am on the transplant list as inactive at this time. Coming to Rochester in June for another checkup. If I am still cancer free I will be placed on the active list. My sister is coming later in June to see if she qualifies as a donor. Just waiting to see how things progress.

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@gaybinator

My understanding is that a fistula and a graft are two different things, with the fistula preferred. https://www.azuravascularcare.com/infodialysisaccess/types-of-dialysis-access/

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@gaybinator, thank you. I was using the terms interchangeably, which wasn't accurate. You're absolutely right, a graft and a fistula are two different things- a fistula uses your own vasculature exclusively while a graft connects artery and vein with "tubing."

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