Anemia and CKD

[RosemaryandThyme]

My husband has been stable in the eGFR 35 - 40 range for years but whenever he has his blood work taken his anemia is worse. His hemoglobin is now at 105. Neither his GP nor his nephrologist will offer any advice and they both refuse to recommend a renal dietician. Can anyone here help.

[Hidden]

The choice is up to you and your husband but, if it were me I'd fire one or both of them. Back in March my PCP ordered labs and the urine labs were so far out of sync, that she couldn't explain them and refused to re-do the test.

I contacted my nephrologist and he had me come in and re-do the test. The test was in the normal range. I fired the PCP and found a different, more

responsive physician.

If you are in the USA please go to eatright.org and in the upper right, they have a red box for finding an expert. Click on that and enter your zip code and you'll find a few dietitians that may be able to help. It is highly unusual, not to mention unprofessional for a nephrologist to refuse a referral to an RD considering your husband's GCR.

BEST OF LUCK

[RosemaryandThyme in reply to Hidden]

Thank you Mr_Kidney. We have realized for some time that we need a new nephrologist and GP- both unhelpful. We live in Toronto and a few years ago it was difficult to find a new doctor so we have been sticking with the ones we have now. I guess now we will have to make the effort.

[Bet117 NKF Ambassador in reply to Hidden]

👍

[orangecity41 NKF Ambassador]

I have had similar situation. I am CKD 3b and have anemia, but my GP did not offer any solution. Do not know if you are in US, but I am on Medicare and the treatment for CKD anemia is not covered until your HCT is below 36 and I am not that low yet. My RBC is low also Did the Doctor say if the anemia is related to CKD?

[RosemaryandThyme in reply to orangecity41]

No, we are in Canada. They measure things differently. My husband's HCT is .311 and I don't know how that would compare. His doctor never mentioned any treatment. In fact I had to tell his doctor that the anemia is probably related to his CKD. I went online and found a few websites that talked about shots of EPO but I don't know how that would work.

[Hidden in reply to RosemaryandThyme]

Regarding the Renal Dietitian. Knowing you live in Toronto, Canada I entered the main zip code in the eatright.org website and found two in Lockport and Youngstown NY. I bring this up as a possible solution for you. I live two hours away from my RD. I went there for two visits and if I have any significant changes to my bloodwork, we handle it via e-mail. I thought it might be something for you to consider. Best of Luck.

[RosemaryandThyme in reply to Hidden]

Thank you Mr_Kidney. You are a great help.

[Pugnut7777777 in reply to orangecity41]

Your spouse will get the treatment for anemia when he reaches the level medicare will reimburse for it , sad but true

[orangecity41 NKF Ambassador in reply to Pugnut7777777]

This is true unfortunately for those of us on Original Medicare.

[Bet117 NKF Ambassador]

Rosemary and Thyme,

I am so sorry that both your GP and nephrologist have shown their dismissive, incompetent side.

I agree with Mr._ Kidney; time to put together a new and competent medical team who will listen to your concerns, communicate directly with you in basic terms and communicate with each other.

I was faced with the same decision several years ago when my metro nephrology team had me on an incorrect dose of a blood pressure medication which yielded dehydration, refused to suggest a plant based protein to raise my albumin level; telling me to " buy a book" and slammed the phone when he called me regarding labs.

He also refused to return calls to my GP and never had the office fax her labs and visit summaries via my request.

I fired them and have found a wonderful nephrologist who is closer to home and is also associated with a teaching hospital.

It is frustrating. First look for a GP - ask around and see if they can recommend someone they respect.

We are always here to support; reach out as one of us will always reach back.

I promise that your husband will be in good hands soon.

Bet

[RosemaryandThyme in reply to Bet117]

Thank you Bet. You are very kind and supportive.

I'm sorry you had such a bad experience with doctors too. I have found that we need to check everything before following a doctor's orders. One doctor also gave me a high dose of BP medication which made me so dizzy I fell down and broke a hip.

We are definitely going to find a new nephrologist first. I found one on the Rate my doctor site and he sounds wonderful- all glowing reviews but he practices in the same teaching hospital as our present nephrologist so I don't know if he will accept my husband. But we will try.

Thank you again for your support. Actually I am overwhelmed by the support and the knowledge of the people on this site.

R & T

[GERALDDAVID]

I last had an eGFR of36 and had trouble with anemia for years. I take iron every day and my hemoglobin has improved. I am 72, they found a spike in my blood indicating MGUS. You might want to look that up. People with blood cancer start with this, 1% a year up to 20% chance it could develop into multiple Myloma. They check myt blood 2 or 3 times a year now. MGUS, Monoclonal Gammopathy of undetermined Signifance.

[not2worry in reply to GERALDDAVID]

My husband had a kidney removed in 2013. During our regular 6 month visits to the Oncologist he has had no reoccurrence or metastasizing of the cancer. There was a indicator of MGUS in his blood work 2 years ago but we were told this is a natural phenomenon as we age, but does need to be watched.

My husband is 85 with CKD and CHF. Our decision at his age was to just let it be.

[RosemaryandThyme in reply to GERALDDAVID]

Thank you for the information Gerald. I have never heard of MGUS but will certainly look into it.

[RosemaryandThyme]

Thank you Mr-Kidneys. I shall have to spend some time studying the article.

[My_Kidneys]

I have added many other websites in the CKD AND ANEMIA folder.

[RosemaryandThyme]

Sorry Mr-Kidneys where do I find the folder?

[orangecity41 NKF Ambassador in reply to RosemaryandThyme]

You select posts , on the top line, and there is Search Posts and put in topic in this case anemia.

[RosemaryandThyme in reply to orangecity41]

Thank you. I found it.

[Hidden]

I'm happy for you Chitt, however we don't recommend remedies like that. If someone wants to bring it up to their physician then that would be up to them. If the claims made on the site you posted where true then every nephrologist would recommend them and there would be no one dealing with CKD. Unfortunately, there are almost 37,000,000 million Americans with CKD and there is no miracle cure. Have a nice day.

[Bet117 NKF Ambassador]

Dear R& T,

No need to thank me; this will all eventually work itself out. Right now you are going through the frustrating element- finding the best doctor.

I feel that you are on the right track; you know what you want in a doctor, make it known to them. If the team does not listen, explain in basic terms and consult with other team members; not for you.

As far as the Anemia is concerned, some great folks here have shared excellent thoughts and sites with you.

I know that the medical system in Canada works differently than in the US. One goal in getting the new team together is getting this addressed.

In the meantime is it possible to call the patient coordinator at your local hospital and ask for the name, email address and phone extension of the in house dietician who deals with the renal patients? Perhaps you would be able to meet with her and see if she can give you some direction. In this, you are not asking for a referral but information.

I think it's worth a try.

Stay strong and hold your ground ! Have faith as you will have answers sooner than later!

Reach out and let us know what is going on.

Bet

[RosemaryandThyme in reply to Bet117]

That's a good idea about checking with the local hospital. I will certainly try that although it may take a while. With the virus still running wild a lot of the services are not available.

I will let you know what happens.

R. & T.

[Bet117 NKF Ambassador in reply to RosemaryandThyme]

Please do. I am thinking of you!

B..

[Mcsnacks]

My anemia is because of liver disease. Usually anemia is associated with your spleen as it produces red blood cells that are then passed thru your liver and filtered thru your kidneys into your bloodstream. Or that’s how it was explained to me I think. Confusion has started to set in due to less oxygen in bloodstream getting to my brain. The only ways to check and be certain it’s liver disease are unpleasant and doctors usually wait until liver disease is severe to check it because of that. Blood test and imaging aren’t conclusive enough. Liver biopsy or a bone marrow biopsy are the tell all.