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Author Topic: Hello, kidneys worsening and feeling down  (Read 785 times)
MikeOK
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« on: March 14, 2017, 12:10:53 PM »

Hello all, I am new here. I have read many posts and have learned a great deal. My kidneys shur down about 3 years ago because of a prescriptio drug (lithium) and I was in the hospital for 28 days. For the first couple years after my creatinine tested 1.4-1.5. Last Friday I went in for my annual and my creatinine had gone up to 2.36 and my gfr was 29. It has me worried, I am terrified of dialysis. I did start taking Lisinopril about 6 months ago, and I have since read that can raise creatinine up to 30 %, so if that's the case it would explain most of the increase. I am doing labs again in a month but I'm still worried. When it was running 1.5 I wasn't so concerned because I figured I would need dialysis in about 30 years, now I'm not so sure. I'm 54 years old. Please share your words of wisdom with me, I could use anlittle cheering up. How long can you live on dialysis? If I do eventually need it, I plan on overnight PD. What decides if you stay dry or wet during the day? I read of a new artificial kidney in development that may be available as soon as 2020, that sounds promising.
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smartcookie
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« Reply #1 on: March 14, 2017, 02:00:33 PM »

Hi MikeOK!  Welcome!!

Dialysis is scary because it is the unknown, but it sounds like you have a little while before starting.  People can last a long time dialysis, 20-40 years if they take care of themselves.  There are different kinds as well, like hemodialysis and peritoneal dialysis.  Patients who are informed, take their meds as prescribed and watch their labs do the best.  You can sign up for a transplant when your GFR reaches 20. 

Take a look at the threads in the Pre-Dialysis section.  You can get a lot of good information on diet and other things you can do to help your kidneys last longer. 

I am looking forward to reading more of your posts!!  Good luck!  :welcomesign;
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
MooseMom
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« Reply #2 on: March 14, 2017, 02:43:51 PM »

I'd like to have a bit more information, if you don't mind.

I don't know anything about lithium and how it affects renal function.  When your kidneys "shut down", what exactly does that mean?  Were you on dialysis for the 28 days you spent in the hospital?  Were your doctors sure that it was this drug that adversely affected your kidneys?

Do you still take lithium? 

Why is your renal function worsening?  Has your doctor given you any treatment plan?  Does s/he assume that Lisinopril is to blame?
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"Empathy is the soul of democracy."  Jeremy Rifkin
tigtink
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« Reply #3 on: March 14, 2017, 03:35:39 PM »

Hi Mike. My kidney disease was also caused by long-term use of lithium. The single biggest predictor of ESRD for people who use lithium is the time you were on the drug. You are only three years younger than I am, so if you started taking lithium back in the eighties or nighties you likely got a higher dose than they give now, which can also raise your risk of kidney problems. It is generally a slow progressing form of CKD but an increase in creatinine from 1.5 to 2.36 is cause for concern. Do you still take the lithium? I was told when I quit taking it 17 years ago that my kidneys would likely not get worse, but they eventually did. You still might have several years, but there's no way to know for sure. I would ask the doctor if you could go off the lisinopril and try an ARB instead and see if that lowers the creatinine to where it used to be. That would give you some good information. I could not take lisinopril because it gave me bronchitis. I have done well on Cozaar, an ARB.

Please check out my post in the pre-dialysis section about recommendations if you think you want a preemptive transplant before dialysis. You are exactly the kind of person I wrote that for. You may still have 10 or 20 years before dialysis is looming, but you may have much less. No one can tell you for sure. So now is the time to educate yourself about your options and take charge of the process so that if you do face kidney failure down the road you have kept all your options open. There are things you can do to slow down the rate of decline, so focus on that for now and learn as much as you can about the disease and treatment options. Please do not wait for a doctor to initiate things. There is much you can do even at this stage. And maybe you will be lucky enough to never need dialysis. It is scary stuff, but try to remember that even if your kidneys are slowly dying you are still very much alive and can enjoy a good quality of life for yourself if you are willing to work at it no matter how all this unfolds. This is a beginning, not an end.

I hope you will share your journey with us. You will find much support here, and what you share will help others. Welcome to IHD.
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MikeOK
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« Reply #4 on: March 14, 2017, 04:04:33 PM »

Thanks for the kind words everybody! I took lithium for about 3 years, you have to have quarterly blood tests to find the blood level. Theraputic is around 1.0, mine was 14.4. It is toxic to the kidneys above a certain level. They did dialysis right away to wash my system of lithium, I almosr died. I haven't taken it since then. The only thing I can blame my reduced function the last year is Lisinopril, which is an ACE that is known to increase creatinine by up to 30%. That would explain most of it, but I'm still scared. I will see my neph in May and do labs again then. I stopped Lisinopril, my blood pressure wasn't that high, the main reason I took it was because it reduces protenie and is kidney protective. I've only seen this neph once a year ago and since my creatinine had been 1.4-1.5 for 2 years he didn't really give me a treatment plan, just annual labs. I know there must be some things I can do to protect my function but I really haven't looked into it much.
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LorinnPKD
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« Reply #5 on: March 14, 2017, 05:08:35 PM »

Hey, welcome!







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Charlie B53
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« Reply #6 on: March 14, 2017, 05:35:20 PM »


I am surprised no one has mentioned the 'Renal Diet'.  Making better informed choices in what you eat daily to decrease the work load placed on your kidneys.

I have to admit that even now I fail in this, mostly as it is far too late for me.  But you may find it very helpful in extending your time before needing Dialysis.
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Michael Murphy
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« Reply #7 on: March 14, 2017, 08:20:49 PM »

Mike I am going to give you the standard answer I give to people at your stage in ESRD.  How do you feel if the answer is good then modify your diet to reduce your kidney workload.  Get renal diet counciling on what changes you must make.  In my case I was told it was time to start about 6 years ago.  During that time I met with the nurse practitioner and was advised to stop eating processed foods. I did dropped 40 Pounds and  avoided dialysis for 2 more years.  Although I did have my fistula installed ( good idea to have one created as far from the start of dialysis to give it time to mature.  So remember that first question I asked how do yo feel? That's the key questioned as long as you answer good then ignore your numbers that's the nephrologist job.  Watch what you eat and enjoy your predialysis days.  I had two great years making my nephrologist nuts I told him I was waiting for a sign from god.  I never told him I was waiting for a symptom.  When one occurred I called up and started dialysis.  Last thing don't delude yourself how you feel push it past the point of symptoms showing you could be for a rough time.  My first symptom was tossing a fine lunch into a waste paper basket at work. 
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Charlie B53
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« Reply #8 on: March 15, 2017, 06:01:01 AM »


Feeling 'Down' is a normal psychological response to any life altering event such as receiving the bad news about your kidneys.  Every person goes through all the stages of denial, anger, blah, blah, until eventually coming to acceptance and dealing eith whatever they need to do to make the changes in their life.

Learning how to eat healthier is the biggest change we all must make.  We go through life eating mostly what is quick and easy, often fast processed foods that are NOT good for us.   A few very important things I have learned from some very wise old Dr's.

Prehistoric man did not eat processed food.

If it comes in a can or a box you probably shouldn't eat it as it most likely is loaded with salt, sugar, or preservatives (poison).

If you don't fix it, you maybe shouldn't eat it.
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DayaraLee
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« Reply #9 on: March 15, 2017, 06:28:40 AM »

Hello, MikeOK! I don't have anything substantive to add... But I wanted to extend a warm welcome, say pleased to meet you, and tell you I'm looking forward to more of your posts. My husband is pre-dialysis, and we watch labs every 6 months and are trying to make positive changes to diet and exercise to extend the life of his kidneys.
 :welcomesign;
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My husband is the one with CKD, but I'm who needs the coping strategies!
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MikeOK
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« Reply #10 on: March 15, 2017, 08:25:03 AM »

I have heard of the renal diet but haven't looked into it much. My diet is crap. I have gained 75 lb's in the last year because of some meds im taking. Maybe i should see a nutritionist.

The funny thing about it is i feel fine. I have no symptoms so that is good.
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smartcookie
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« Reply #11 on: March 15, 2017, 10:23:46 AM »

Definitely ask your nephrologist to refer you to a dietician.  Better to start early and save your kidneys for as long as possible.  You will also have better bone and heart health for longer as well!!
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Michael Murphy
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« Reply #12 on: March 15, 2017, 11:02:23 AM »

Again something I have written before is that the labs provide some one the information about possibly needing dialysis in the future but not so good about predicting when you will need to start. Starting has been studied and there is no benefit in starting early, again be realistic it's not good to wait to be hospitalized start when you feel tired, feet swell, or constantly nauseous.
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Michelle2016
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« Reply #13 on: March 15, 2017, 01:37:56 PM »

From my experience, the key for long lasting kidney is low sodium diet, controlled BP, and low protein diet.

Take care.
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nursey66
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« Reply #14 on: March 15, 2017, 02:31:18 PM »

We had a nephrologist explain a graft on kidney function and the creatinine number. He drew out a line going at a pretty sharp angle upward and then while continuing upward ,the line goes upward at a way slower rate , toward the end it barely went up at all. At the lowest point was a normal creatinine of 1.0 , at the top of the sharp angle going up was a creatinine of 2.5 . The rest of the numbers were added on the graft  , 3.0,3.5 4.0 4.5 and so on. The line barely moved upwards at those numbers .  What the Doctor told us is to go from 1.5 to 2.5 is to have lost half of your kidney function. After that the numbers keep going up , but the loss of function slows down.  My husband went for 8 years with a creatinine of 3.0-3.5 . Then every year it creeped up, until he had to start dialysis . I found the way the Dr explained it to be very helpful to us , especially since it's a number that we always watched and thought to get to 6 or 7 was a long way to go, but really it's not , after he explained it that way .
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MikeOK
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« Reply #15 on: March 15, 2017, 04:20:59 PM »

Thanks all, I feel better now. If I have 5 or so years, maybe that artificial kidney they are working on will be on the market  :yahoo;
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MikeOK
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« Reply #16 on: March 15, 2017, 06:01:55 PM »

I've been researching the renal diet. No potatoes?? I eat potatoes nearly every day. And bacon and eggs? One of my favorite meals. I suppose it would be better than dialysis.
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Michael Murphy
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« Reply #17 on: March 15, 2017, 07:01:06 PM »

What you have to give up is more than made up for by not being in dialysis.  The best thing I have ever said is that dialysis is better than the alternative.  The Artificial Kidney is been tested successfully as a Wearable Artificial Kidney and plans are to start implant testing in the next few years.  The results from the testing as a wearable were outstanding testers were tod eat and drink anything blood work normal and no fluid gain.  It seems dialysis is being turned into a bridge to the future.
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MikeOK
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« Reply #18 on: March 15, 2017, 07:07:31 PM »

There is an implantable artificial kidney being developed, possibly by 2020:
http://www.nephrologynews.com/implantable-artificial-kidney-project-making-progress/
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MikeOK
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« Reply #19 on: April 05, 2017, 01:38:32 PM »

Hello again. I just got my labs done and my creatinine went from 2.36 to 1.6! My bun was18 whatever that means. It must have been the lisinopril I was taking for high blood pressure, I read that it could raise creatinine. Just one month of not taking it lowered it that much. Thanks for all your support and kindness. I may need dialysis one day but not today.
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MikeOK
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« Reply #20 on: April 05, 2017, 01:48:49 PM »

Also I have a question. The lisinopril is supposed to help the kidneys (it's an ACE), I need something for my blood pressure but do all ACE and ARB meds help the kidneys? Can anyone tell me of a blood pressure med that both helps the kidneys and doesn't raise creatinine? Lisinopril raised my creatinine from 1.47 a tear ago to 2.36 last month. It really had me scared!
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PrimeTimer
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« Reply #21 on: April 05, 2017, 02:26:19 PM »

I've been researching the renal diet. No potatoes?? I eat potatoes nearly every day. And bacon and eggs? One of my favorite meals. I suppose it would be better than dialysis.

 :welcomesign;  Ask a dietician at your clinic. You may not have to give up potatoes entirely. Visit the Fresenius or Davita site and look at recipes. Just when I thought I was cooking my husband healthy meals and his labs were looking good, I've learned to strictly use kidney-friendly recipes and his labs look even better now. I found most recipes use a lot of very tasty ingredients, not as bland as you'd think they might be. Our favorite is "Easy Shepherd's Pie" that I found on the Davita site. I now peel and boil our potatoes twice. He might not be able to have them every day but he does get to still enjoy some. Anyways, I love these recipes because they are good for both of us and so full of flavor. We were pleasantly surprised. Good luck and happy cooking!

Fresenius doesn't make it easy to find their recipes. Hopefully this will help.

1) Go to Fresenius Medical
2) Click on the menu in the top far right corner
3) Click on "Patients And Families"
4) Click on "Living With Kidney Disease"
5) Click on "Eating Well"
6) Click on "Recipes"   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Michelle2016
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« Reply #22 on: April 05, 2017, 03:22:02 PM »

To MikeOK: I have high BP. I took Atelenol before. But my kidney Doctor change it to Lisinopril. I also worried about increasing CR. Now I stop taking Lisinopril, and taking Atelenol again.

Thank you for sharing your experience with Lisinopril.

You can eat potatoes as long as your potassium and phosphorus level are normal.

Take care.
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Michelle2016
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« Reply #23 on: April 05, 2017, 03:34:21 PM »

To MikeOK:

There are many medications for high BP. As a patient, you can refuse to take the medications such as Lisinopril.

Your kidney will last many decades if you take care of it. Again, try the renal diet such as low or moderate protein, low sodium, and control blood pressure with med.

Take care.
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Michael Murphy
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« Reply #24 on: April 05, 2017, 04:18:34 PM »

Mikey's one of the leading causes of kidney failure is high blood pressure. The increased BP damages the nephrons that  are the actual filters in the kidney.
Controlling your BP is more important than diet.  Once you need dialysis phosphorus and potassium are important to watch and adjust your diet to your latest labs.  Right now controlling your BP should be your main goal.  I have been on lisinopril for over 20 years. It all the time I've had no problems caused by lisinopril. However if you feel it's a problem have you talk to give you another form of blood pressure control Well I have no problem with the cerebral I do have a problem with most of cholesterol drugs and they won't finally found one that doesn't bother me "pravastatin that is not the most modern however it works you need the same thing a BP drug without side effects.  Your diet will be different then the diet of people on dialysis fresh fruit and vegetables less meat stop eating processed foods.
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