topic Re: Extra Red Blood Cells in Wellness

Extra Red Blood Cells

spud188 — Mon, 10 Feb 2014 21:09:11 GMT

Had my regular blood work done and have too many red blood cells making it thick and sticky.Am now going in for weekly theraputic phelbotomy,they take out a pint each time.

Have any of you had this problem or know anything about it??.I am not finding much on the web.

Re: Extra Red Blood Cells

RedTop — Mon, 10 Feb 2014 21:39:16 GMT

I know someone with the same disorder. It was discovered in his 20's, and he described it as a mild inconvenience through his 20's, 30's, and 40's. He was in his 50's when he was diagnosed with diabetes, gout and several other health issues. He suffered a serious heart attack last year, and there were some complications in his recovery, related specifically to this blood disorder. Please make sure you follow your physician's advice regarding treatment options, to keep your situation under control. Best wishes to you.

Re: Extra Red Blood Cells

PhatCat — Mon, 10 Feb 2014 22:00:43 GMT

Myeloprolifertive disorder, Polycythemia Vera. My husband has had this for years. He started out with having phelbotomy twice a week and then once a week. After a few years it didn't help anymore and he started chemo meds about 5 or so years ago (hydroxurea) sp. He sees his hematologist every three months and has been doing well with the chemo med.

Good luck to you.

Re: Extra Red Blood Cells

maddiecat — Mon, 10 Feb 2014 23:26:13 GMT

My neighbor has this. She was diagnosed in her mid-40s and is now 54. She jokes that her blood has the consistency of grape jelly! She goes for a phlebotomy about once a month.

You'd think that she would be tired and sluggish all the time. Not at all. She works full-time and is always busy around her house.

Re: Extra Red Blood Cells

spud188 — Tue, 11 Feb 2014 06:55:24 GMT

Thank you for sharing.

Re: Extra Red Blood Cells

luvsthecoast — Wed, 12 Feb 2014 02:24:26 GMT

Hi spud. I've been a lurker on these boards for a long time but I'm signing up now to respond to you. I have PV. When it was finally diagnosed my numbers were really high so I had to go in every day for phlebs. Now that they're where they should be I go in monthly for blood tests and sometimes need them every month; sometimes I can go a couple of months. Have you had to have a bone marrow biopsy? It's amazing how much better I felt once I got past the initial phase of having them all the time and now have my blood at the proper level.

ETA: I would love to hear from you, your experiences, etc. It would be nice to have someone to go through this with....

Re: Extra Red Blood Cells

PhatCat — Tue, 18 Feb 2014 18:25:26 GMT

On 2/11/2014 luvsthecoast said:
Hi spud. I've been a lurker on these boards for a long time but I'm signing up now to respond to you. I have PV. When it was finally diagnosed my numbers were really high so I had to go in every day for phlebs. Now that they're where they should be I go in monthly for blood tests and sometimes need them every month; sometimes I can go a couple of months. Have you had to have a bone marrow biopsy? It's amazing how much better I felt once I got past the initial phase of having them all the time and now have my blood at the proper level.

ETA: I would love to hear from you, your experiences, etc. It would be nice to have someone to go through this with....

luv, I didn't mention the biopsy, didn't want to scare the poor girl.

Glad to read you're doing so well just having phlebotomy, that's wonderful!

Re: Extra Red Blood Cells

Wsmom — Tue, 18 Feb 2014 22:53:54 GMT

sorry...wrong thread!!

Re: Extra Red Blood Cells

Lapdog — Wed, 19 Feb 2014 05:03:21 GMT

I also have Polycythemia Vera. My doc also talked about a bone marrow test but I asked if I could try the draws first. I only had to have the therapeutic draws once a month. I am lucky, I had quit smoking and my levels now remain normal without the draws. I had the draws for about a year. Best wishes.

Re: Extra Red Blood Cells

Reever — Wed, 19 Feb 2014 05:06:51 GMT

I dread getting blood tested because of the anxiety created waiting for test results to come back. It can take over 10 days to hear back if everything is normal or not. My doctor really goes over them with a fine tooth comb and even tests for Vitamin deficiencies.

Re: Extra Red Blood Cells

luvsthecoast — Wed, 19 Feb 2014 05:57:35 GMT

FATCAT, that was probably smart not to mention the biopsy! lol It's good to hear your husband is doing well on the meds.

Lapdog, you are indeed very lucky not only because quitting smoking is able to keep your levels normal, but also that you were able to dodge that biopsy! The doctor didn't give me the option. Do you still go in routinely for blood tests to monitor?

Reever, that's great your doc goes over them so thoroughly! Unfortunately, my doc was worthless and never checked a thing so this got completely out of control and in complete danger mode before it was caught.