3 replies to this topic

[pamsouth]

My EST GFR MDRD IS 56 and my EST CRCL CG is only 49. Remarks; ""Decrease in GFR If estimated  MDRD/CRCL chronically IS in this range thIS corresponds to Stage 3 CKD, Chronic Kidney Disease, this has been going on for about 2 or 3 years, I think.

     Last Thursday I ask my Hematologist/Oncologist about this, and he said it was BulL/SH, as Creatine and Bun were normal, it was Ok.  He didn't like the formula they est for GFR.  You can go on the internet and key in your age, female weight, and creatinine and it will give you your GFR.  Some reports say Creatinie will stay in normal range until you kidney function is below 60 %.  It is hard to know what to believe and understand it all.

      I called two kidney specialist / Nephrologist,  but they won't see me unless I have a doctor referral.  I called Medicare and they said I don't need a referral.  But it seems the Nephrologist specilist wants the doctors referral.  So I have appointment tomorrow, Mon, with  primary doc and I am going to insist on a referral.  After kidney specialist I am going to St Vincent Cardio.  I have lost 40 lbs and discontinued blood pressure med's Metoprolo because blood pressure got to low from losing weight.   I take Triamterene/hctz 37/5/25, it has 37mg of blood pressure and 25 mg of diuretic. I am suppose to take it as need, my hands, mainly the left one will swell badly, I have trouble using the hand,  so I take the Triam/Diurectic and blood pressure drops below 100 but the swelling  goes down.  Also seem like when my hands swell my hips and knees hurt, wonderful if swelling and blood pressure issues are from bad kidney filter??.  I have also tried getting The triamterene/hctz  pill form instead of capsule, so I can try cutting them in half.  Nothing works.  My blood pressure may even be normal but the swelling, make it to where I can't use my left hand very well and my joint will bother me.  So I don't know if it from a kidney problem or not.  Seems like everyone is just guessing?

Meanwhile I ask onc to switch to Sprycel 50mg for about 3 month and if I am at the low CCYR to leave it at 50mg, if not I would go as high as 70mg.  The standard protocol is maybe start at 50mg for a week then straight to 100mg.  But I will try an stay at 50mg.  He was not happy but said he would check with insurance.  I haven't take Gleevec since a week ago Friday as I had a boil on my left elbow and my arm swelled up so am on antibiotic, he wasn't real happy about not taking Gleevec, but if switch TKI need to take a vacation anyhow.

I don't want to lose my kidneys!!!!  I just got back from a 4 week vacatin in Florida, and stayed 1 week with a school chum I haven't seen in over 50 years. She has been on a kidney dialyses for over a year and has a donor friend, that is if the donor passes all her test, she will get a new kidne in a few months. .  I was in better shape than my friend.   She starts on dyalsis at 6: 30am for about 4 hours, comes home, they pulled 7 lbs of fluid off so she had to stay until they broght her bl pressure up, then comes home, sleeps the rest of the day, gets up a couple of hours goes back to bed.  Next day tries to run a few errands but has to get sit or lay down somewhere.  She will get a donor.  I can't imagine anyone giving a kidney to somene 65 years old with CMl and taking drugs that will probably shut another good kidney down.

If I have to go on a dialyses I would rather just thru in the towel.  I have read several different article and it is hard to know what to believe.  I called the pharmacist and he said Gleevec can cause kidney problem.  Been on Gleevec 8 years.

What is your opinion, as I know you have been on Gleevec  a long time 8 years, and have had a low GFR for two or three years and lost my Gall bladder after 2 years of Gleevec, Sugeon said gall bladder looked good I guess it just quit working.

1. I need to see a kidney spealist, 2. I need to go to St Vencent Cardio, one of the best Cardio hospital in the world.  3. Probably change TKI at a low dose only.

Well I see this turned out quite long!! 

Thanks Pam

[Susan61]

Hi Pam:  Relax  I saw a Nephrologist 6 years ago, due to a low GFR.  He tells me I have Chronic Kidney disease, and I kept going to him and paying him a specialist fee for him to say your okay.  See you in 6 months.  I said my Primary can do for me what he is doing.  I am running between 52 and 42 on my GFR readings now for the past 6 years or so.

I have a very bad problem with not being hydrated.  I do not drink enough fluids.  Dehydration can bring your number down also.  I forced myself to drink a lot of water before one of my tests, and my number came up to 52 from 45.  My numbers are always different.  I do get concerned, and I think about Dialysis too.

    Try not to imagine the worst.  I know Gleevec which is what I am on can effect the kidneys, and your told to drink a lot of water with your pill.  I have also been on BP medication for years which is known to effect the kidneys.

   I have to go in a few weeks for my blood work, and I am more anxious over my GFR than the rest of my blood work.

So I do understand how you feel.  You sound very overwhelmed.  Please let us know how you make out with these other doctor visits.

Susan

[pamsouth]

I see my primary tomorrow.  I am going to insist on a kidney specialist.  This GFR has been getting worst over the last 2 ?3 years.  Yea your right I am overwhelmed about my kidney's.  I stayed a week with my best friend from school days, hadn't seen her for over 40 years.  We hung together in Florida for about two weeks. When young, we were both tom boys and rode their horse and swung on the intertube and jumped in the ponds, those were happy days, grooming the horse and going to horse shoes.  However when we grew up we went different dirrection.  I furthered my education and job skills in the computer. technology and worked mostly for Electronic data system with General Motors.  She was a tall, lean red hair, freckle face, muscular gal, very stunning.  She went into construction, roofing, painting, etc.  That was back in the late 60's and 70's when women didn't do that kind of work.  I can't believe the toll her health has taken on the kidney dialyze.  Hopefully her donor will pass all her test and she will get a new kidney.  When she was 57 years old, she found out  that one of her kidneys did not fully develope, a dud, so she has been living on one kidney, she is 65 years.  I can tell you after hanging out with her for two week, there is no way I would spend my last years on a dialyse, that is definitly when I am throwing in the towel.  That is why if the ins approves Sprycel there no way I'm going above 70mg, going to try to stay at 50 mg.  He says oh you will know when you can't breath, now that is a joke, when I can't breath.  No way Hosea, going to try and stay at 50/70 or go back to Gleevec on a lower dose, I'm not loosing my kidneys I already lost what the surgeon said look like a perfectly good gall bladder that quit working, that was two years after taking Gleevec, I thought it was Gleevec making me sick for the first two years, then when I had this 2 hour test they said the bile duck tube didn't open when it was suppose to.  So what went work with the gall bladder and now the kidneys going bad?  I would say a combination of drugs, age, and leukemia all mixed into one.   It like no big deal just go on  dialyze, I don't think so.  I will go on a low dose of whatever and take a vacation if I need to.  What make the diff if you die from Leukemia or they kill off your organs.  I think we are the guinea pigs for what, these pills are not even close to a cure, no where close to a cure, but they do bring big profits.  The oncology nurse said oh I have a friend who does dialsye at home and he is fine.  They down play everything.  For those who are canidate for a transplant is one thing, but there no way I would expect anyone to give me one of their kidneys, not a 65 year old with leukemia that takes toxic drugs that kill slowly kills your organs.  I told onc you know this start at the top with one stem cell and these TKI only kill the PH+ at the bottom of the chain, and the PH+ is in everything, he said right and I said that is far from a cure, so where is the cure I was promised 8 years ago, he said maybe in 50 years.  You would think with all this money they make from these doctors they would find something.  I think there are natural remedies, but you can patent herbs and their is no money in them.  That is my beef.  I think our health care is screwed up!!!  I don't think it started that way when I was a little girl and doctors took an oath, but greed has set in, even in our government.

Sorry, but this merry go round with health care is really p... me off.

PamSouth

[Susan61]

HI Pam:  I am very upset with all my health issues also.  I try not to discuss it all on here, and stick to my CML.  I am sure you and I are not the only ones with these problems.  We know long term use of any drug will take its toll, and thats why so many on here are trying to stop their TKI drugs.  I have to stop, and look at where I was back in 1998 when first diagnosed.  I went through a lot back then, and  had no choice but the Gleevec.  I have to be thankful everyday for the past 14 years. I also hope to cut back on the Gleevec.  I am on the Gleevec for 8 years longer than you, and I am sure it has caused a lot of my other health problems.

     How do you know what to blame the kidney problem on.  I also have been on BP medication for many years, and my BUN/Creatnine has been low and high since the late 80's before I started on the Gleevec.  Also, years ago the blood work did not report a GFR.  Its only been the past 10 years or so that we see that on our lab reports.  I cannot keep making myself crazy with all the what ifs.  I am also Diabetic.  There are so many things that can effect our other organs.

    I hope you feel better after your doctor appointment.  Please share what you find out at your Primary appointment, and in the meantime just trust God to get you through all this.  I will keep you in my prayers, please do the same for me and everyone else.

Susan