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Early CKD Support
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I am a 63 year old female and thought I was in great health with the exception of resistant high blood pressure for the past five years. Last year, blood work was perfect and I just got the results back from my annual blood work with a egfr of 39, urea of 37, creatinine of 1.14 and ratio of 26. I knew nothing of kidney disease until my GP said she was alarmed and referred me to a nephrologist. My appt is in two weeks. I feel fine so I am wondering what am I in for? Thank you in advance for any help you can give me.

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Good you got referral to Nephrologist. When diagnosed I felt I was in good health at age 74, but realize now did have symptoms. I was misdiagnosed . My new Primary Doctor diagnosed me with CKD level 3b. It was a shock. My Doctor put me on a pre-dialysis diet 2 years ago and a modified exercise routine, things have stabilized. There are many resources for support in the CKD journey, such as this web site and Davita.

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Thank you so much! What makes me mad is that my friends who have high blood pressure take a little lisinopril and it’s fine. Mine kept fluctuating with high readings and now on lisinopril 40, amlodopine 10, clonidine (5 a Day spread out throughout the day) and the 12.5 water pill... and still big fluctuations. I asked the GP could there be any other reasons for the high blood pressure fluctuations and he said prior that just some people have resistant high blood pressure. So now I am thinking it is probably caused from a renal vascular issue. I can’t believe nobody suggested this before! I am hoping it is something that can be fixed (if that is what is the reason now for the kidney issues). How are you feeling?

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I am doing ok for my age, and fully adjusted to the diet and routine. As one ages are different medical issues, so all symptoms may not be attributed to CKD. Imagine it does have some effect though.

Once you get to Nephrologist and get on the right treatment plan for you, things will get better.

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My GP told me that, in my case, it would be better if my b/p was a tad higher rather then too LOW. It averaged 150/88 for many years but now that I've given up eating junk and lost 8-10 lbs, I'm now averaging 125/72 but my pulse is often under 50. Maybe that's why I'm so tired. Also, I'm anemic and want to correct that. Wondering if beef liver would be ok. Anyone???

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Wow that is just so great! Since I am so new to all this, maybe someone with more experience can answer your beef liver question. 😊

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The American Association of Kidney Patients is partnering with an organization on a Clinical Trial in Phase II for those with anemia. I've attached the link for you. After you answer some basic questions and give them your phone and e-mail they'll contact you if you meet their protocols. It can't hurt to try and see if they offer an alternative.

Best of luck

leapcure.com/

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hi your blood presure is fab..and you have a pulse rate of an athelete..so not that bad..avoid ibruprofen and similar dtigs which damage kidneys..and keep chin up..and most of all smile a lot...😊 regards chris and family..

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Thank you so much!!!!

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Also my kids are all worried and I told them to really read up on it as it seems like people live a long time with kidney issues! It’s the first thing that has ever seemed serious and I told them that we are getting old and stuff happens! Hope you are feeling okay!

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There is much wisdom in what OC41 said. The only thing I can think of to add is that you bring a list of your meds, including dosages, and if you are consistent, the time you take each one with you for the doctor to see. I'm sure there is a reason for you taking both Lisinopril and Amlodipine. I spent two weeks on Lisinopril before having an incident and they switched me to Amlodipine. That was almost two years ago and I'm doing fine on my BP. I check it every morning and it's been under control for many months. The only problems were four months ago when I was told I had CKD Stage 3. My GFR was down to 32 at its lowest but at the end of October, it showed at 51. Diet changes to kidney-friendly meals helped but the biggest reason for the uptick was the elimination of some meds that were not kidney-friendly, lowering dosages that were too strong for me with CKD and having the doctors aware that I was in charge of my health and they were asked to provide me with sound advice so that I could make informed decisions.

Best of luck

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Thank you so much!

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Tackle, so many things can cause kidney disease and many of then can be treated and progress slowed. My GFR was suddenly found to be stage three 15 years ago and stable since then. My blood pressure has also been hard to treat and some of the medications made me feel awful. Good news is that avoiding nephrotoxins and careful monitoring can control many things. The Nephro can hopefully diagnose the reason for your GFR decline and let you know what you need to do. I am also 63 and female. Good luck😀Debbie

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Hi Debbie! Did you have the test to see if your high blood pressure is from a renal vascular problem (that could hopefully be fixed?)

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I don't know what that test is? My blood pressure was caused by damage to kidneys as a child. I had many infections that damaged my ureters and kidneys because of reflux..this was finally corrected but the damage was permanent. Sometimes HTN leads to CKD and sometimes the HTN is secondary like in my case 😀Debbie

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Thanks for all the info... I am so appreciative. The test is a CT scan with dye and an ultrasound. Not sure if all the details yet tho! Hope you are feeling well now!

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Just based on my research of the last couple of days I have some information to share. I have a CT Scan coming up on Thursday. It was ordered by one of my doctors and it was to be given without contrast. Having one done with contrast if you have CKD can put you in danger of ESRD. There are excellent articles found online from the Mayo Clinic and Johns Hopkins if you want to read them.

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Tackle I have been in your spot. My kidneys are fine but my labile essential hypertension makes my metabolic panel freak out. My gfr has been as low as 29 and creatitine as high as 2.5. So your numbers can change day by day for the most part. If my BP is low my numbers are bad, if they are elevated they are better. My kidneys are used to being a bit high but when my BP is low they freak out. I take a lot of meds for hypertension and is not fun and the ups and downs are rough. (HCTZ 25mg, Spironlactone 150mg, Hydralizine 50mg three times a day, coreg 12.5mg twice a day, quinapril 40mg, amolidipine 10mg)

Take a deep breath, and write down your questions. I love love my nephrologist. He is my fav doctor because he cares and has really spent a lot of time with me. He is also a professor who does research here at the med school and has brought my case to others doctors and students. Recently the doctor has suggested I have paroxysmal hypertension through consultations. I also know I have aldosteronsim which affects my BP. Keep me updated on how the appt went.

It is frustrating to see people that take1 pill and are fine. I get that.

Good luck

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Thank you for sharing! Did you have the vascular tests I have read about like the dual ultrasound and CT scan with dye? If so, what did they reveal and did you have the angioplasty and stent procedure? I am trying not to have false hope but some articles I have read seemed very positive, not only to halt kidney damage but to actually bring back normal blood pressure. Hope you are feeling okay!

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I am on medicines for Blood Pressure, I am 76 yrs. I do pay attention to my health. After all these years I have learned that you must be a healthy weight. You can take all the medicines that they prescribe and they help to a point. You have to control your weight. I have no clue if you are overweight or not. But I do know that it will hinder most of your efforts to control your health. I have had 4 different cancers. I have had my right kidney removed. I do feel so much better today then 10 years ago. I have stage 3 CKD, because of the removal. I also, have been fighting Afib for over 30 years. After losing over 30 lbs, I have not had an episodes for months. You need to be in control !! I am still trying to lose at least another 15 lbs. Now please I know, there are healthy people out there that still have kidney disease and fighting this battle. I am just letting you know me. Again, I am 76, garden, ride my bike, walk, and feel great. Stage 3 is really ok for you stay healthy. God Bless.

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You sound like you are a real trooper!!! Thank you for your positive words!

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Hi, your story is much like mine. Mine ended up with an ultrasound, kidney doctor, kidney stone that he thinks was there a long time, then dropped, surgery. He thinks stone had been there awhile and damaged kidney according to renal scan. Other kidney is great. I too am doing so many right things. I have been drinking about 100 or more ounces of water a day. I have a stint that keeps damaged kidney flowing. I would say watch salt, and look up kidney disease.

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I am so appreciative to hear your story! May I ask how old (Er... I mean young!) you are and how long did you have high blood pressure? Were you taking several medications and still having trouble controlling your blood pressure? I don’t have any kidney symptoms... since you had a kidney stone did you have symptoms? Do you have any other cardiovascular damage? So sorry for all of the questions and I promise to pay it forward after my journey. Also, did the stent help relieve your blood pressure and slow down kidney damage? Did they know right away you needed a stent? Oh brother... more questions and soooo sorry! Thank you so much!!!

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I am on blood pressure medicine but it is not high. More for water retention of which has always been an issue, so the stint is helping me go more. I had no idea on kidney stone except gfr, creatinine numbers started changing and it wasn’t anything I was doing. I went to doc last week, thinking they may remove stint, but I asked if I could keep it. It may help the damaged kidney. Will have another expwnsive renal scan done and we will go from there. I just turned 62, exercise a lot each day, pretty much dairy free, very low carb, avoid sodium. No alcohol, do not smoke anymore. That is why my kidney doctor thinks stone had been in there awhile causing damage. I also have a very high pain tolerance. I actually passed 6 mm stone that was in my ureter and didn’t know I had passed it. Our stories are very much alike. Hope this helps. I am watching sodium, potassium, phosophorus. Some things like spinach, kale, nuts, berries...there is a list...things high in oxalates..doctor suggested I take a Tums before eating any of them. That is what he does. Done things that people have thought so healthy can be hard on kidneys. My doctor sad it is a silent epidemic.

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You are so right!!! After reading tons (up until last Thursday I had no idea a person has 2 kidneys lol so I am really starting at ground zero! And the food is so different let’s say than the food you would eat to lose a few pounds (all protein, zero carbs, bananas) So a lot to learn! Let’s keep in touch as our stories are so similar! Thanks again!

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right takle..with egfr of 39 its not the end of your world..i had 37 egfr which lasted me for about 17 years ...best to keep diet light not heavy read meat..avoid ibruprofen like the plague.or any similar nsaid drugs which damage kidneys..drink plenty of water .and most important of all is keep positive and LIVE.not worry..all the very best to you..and an early merry xmas..chris and family

..

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Thanks so much! How are you feeling now and do you know the reason behind your kidney disease?

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