Diagnosis Hemolysis

[djacq]

Thank you for all your concern and response to my problems. After having my lab work for a month, my hematologist told me yesterday that I tested negative for Porphoryia. I guess that was a long shot as it is such a rare, odd disease. The labs work did show anemia and I am surprised I had to wait a month to hear this and get started on Iron. What a wasted month.

She is concerned the blood work did show ?mild hemolysis? which I understand is a complication from VR. From what she said there is no help for this?
The Iron is a ?band aid? and she wants me to have more work ups.

More Lovenox bridges. I still have lumps in my abdomen from the last series a few months ago even though I used all of your great tips, ice, etc.

The problem still remains that I cannot tolerate any meds and Warfarin is the only thing I can take and now that is on a wild ride of INR?s all over the place. I am noting in my work in the community, a lot of people on warfarin have unsteady INR?s.

The rest of the story is because I cannot take any meds, I now have a fracture in my back. My PCP is realizing my problem of med side effects (myoclonus)and is referring me to an endocrinologist. I guess to rule out parathyroid problems. My Asthma Dr is still working on how I can take asthma meds. My lipid nurse is recommending Co Q 10 for my borderline cholesterolemia and I am trying Isotonix Calcium to prevent further fractures.

Again, thank you for being there but I still really don?t have any answers and have continued frustration for my need for larger and larger doses of warfarin and up and down INR's.

Hope everyone is enjoying what seems to be such a short, hot summer.

Donna

 

[Nancy]

Donna-

Joe had hemolysis, basically from his very old Bjork-Shiley valve.

He took iron supplements, prescription folic acid and ProCrit shots (which I gave him) 3 times per week. He was under the care of a hematologist for years.

That only managed to keep him at very low normal, or just below most of the time. There were times when he still had to be transfused.

Later on, he developed kidney problems, and this also contributed to the anemia situation.

I hope they can find a good solution for you.

 

[djacq]

Thanks Nancy,

I thought I remembered that Joe had hemolysis but didn't realize it was from his old valve. I wonder how often this happens with the newer St Jude valve. Also, it was a help to note he continued to see the hematologist as I sorta felt she was not going to follow this. Yes, she wants a kidney work up also. I wondered why she did not precribe Procrit. I don't see her for a month which I think is rather long. Living on the coast of RI, we seem to have a Dr shortage and its difficulty getting in to see anyone.

Thanks again, Nancy

donna

 

[Nancy]

He also had some sort of condition in his stomach which was an inflammation kind of thing (gastro called it "punctate erythema"), I saw the pics, it was little pimples which were bleeding in a seepage sort of way. He had to have that sealed with argon vapor cauterization. They did about a third of his stomach. That helped some too.

So there were several issues involving his anemia.

 

[ALCapshaw2]

Thanks Nancy,

I thought I remembered that Joe had hemolysis but didn't realize it was from his old valve. I wonder how often this happens with the newer St Jude valve. Also, it was a help to note he continued to see the hematologist as I sorta felt she was not going to follow this. Yes, she wants a kidney work up also. I wondered why she did not precribe Procrit. I don't see her for a month which I think is rather long. Living on the coast of RI, we seem to have a Dr shortage and its difficulty getting in to see anyone.

Thanks again, Nancy

donna

Donna,

Do you know what series of St. Jude Valve you have?
(i.e. is it the older Master's Series or the relatively new St. Jude Regent Valve?)

You may be want to read what On-X has to say about Hemolysis. Hopefully it is on their www.onxvalves.com website. If not, contact Catheran Burnett, RN, at [email protected] or 888-339-8000 ext 265 for more information.

'AL Capshaw'

 

[djacq]

Good Evening Al,

Jeez, maybe I wish I had the on-x valve. Looks like it is more hemodynamic.

I have a SJM Regent Valve implanted 12/02. Its not that old and choppy is it? Do you think I will need it replaced? Maybe I'll just eat a bunch of liver everyday but that won't help my cholesterol will it?

Thanks for the referrals for info.

thanks al,

donna

 

[catwoman]

Donna:

I have hemolytic anemia. DXed last year. I have some perivalvular regurgitation, which is a contributing factor.

I take 1,000mcg of B-12 tablets daily -- 16,666% of the RDA. That seems to help. Also take a general multi-vitamin.

I can tell a big difference if I go without the B-12 and also don't get enough sleep for more than 2 nights running. I start feeling like I did post-op.

Don't know much about Procrit, other than I assume it's another trademark version of erythropoietin, which our cat Ramses was on for 18 months due to kidney failure. (This was in 1994-1996.) It boosted his energy immensely, and he could go to 3-4 weeks between injections.

 

[Susan BAV]

She is concerned the blood work did show ?mild hemolysis? which I understand is a complication from VR. From what she said there is no help for this?

Hi Donna - I hope they will get to the root of your problem.

Your comment made me wonder about a couple of things. Perhaps you or the other responders know?

Could a diagnosis of "mild hemolysis" cause the severity of your problem? Is it an ongoing issue? Is it a situation that gets worse? And can this happen with a tissue valve?

Also, can this happen with a natural but unhealthy aortic valve--I ask because one of my uncles may be struggling with this, though his doctors still aren't sure after putting him through dozens of tests; and he still has his native valve and has never had OHS or any significant heart issues before this.

I have read some information here--perhaps the other posters can verify or nullify it--that greater Vitamin K intake can smooth out the INR fluctuations. I hope things will smooth out for you soon.

 

[Nancy]

Donna-

Maybe the reason ProCrit hasn't been suggested for you yet is because your problem is not severe enough. ProCrit is very expensive. If I remember correctly, it was $150.00 per shot, times 3 per week-- a huge amount! It was paid for with insurance, but still, perhaps doctors have to really justify its use.

It did work well, though, for Joe.

There is a longer term form of Epoetin which doesn't have to be given three times per week, only once, I think. Can't remember the name. They always used it as a substitution in the hospital. What happened when they used this on Joe was his bloodwork would dip at the end of the dosing term. So I thought Procrit 3X per week was the better choice for him. It was a more even dosage.

 

[briansmom]

Yes, ProCrit is very expensive and they also have found that erythropoitan can cause blood clots (though all the studies were done in cancer patients). They do not want to give EPO shots anymore unless the HGB is below 11- some docs won't give it unless the HGB is below 10. Brian got a shot of Aranesp last time around and his anemia has been good for at least 3 months now - so maybe that is the long acting one.

We have been trying to figure out my son's anemia for 2 years now and we have never gotten a definitive answer. Brian also resorted to IV Iron therapy to bring his iron into range because he just couldn't take enough iron - it made him sick to his stomach - but the IV iron really gave him a lot more energy.

good luck and please let me know if you figure out anything.

 

[Nancy]

That's it Aranesp, the long acting one.

 

[djacq]

Thanks for the info Marsha. I went out and bought B12 1000mcg and I am taking the Iron 325 three times a day and C Q10 per my lipid Dr as I can't take statins or anything else. Yes, I feel as bad and maybe worse since my AVR. My HGB is 10.4 and I guess I thought I should have more medication (Procrit or Aranesp? or even IV infusion).

Today, I realized in spite of all the Dr's involved in my problems, I should inform my Cardiologost as my Haptoglobin is 7 with norm 43-212. My LDH is 205. I don't know if this is his provence now. I faxed him lab reports and will see if he calls me I guess.

I hope I start feeling better with the Iron, B12 and regular Vitamins. I am struggling with all the waiting as my hemotologist who had the bad labs for a month before she told me so now I am getting copies of my labs and being pro active and call the office for results instead of waiting forever.

Susan, I wish I had the answers myself to you interesting questions. Yes, I also wonder if my carefulness not to overdo Vit K has caused other problems.

I have had this problem (anemia) 3 years ago. Well, not with labs so far off, and never found the reason either. It seems to be an elusive diagnosis and I will check on that stomach thing that Joe had Nancy.

So, Upper GI in 2 weeks, Pulmonologist Monday for Sleep Apnea and unmedicated asthma. The other thing the Hema Dr wants me to do is have a kidney work up and I see an Endo Dr to get my parathyroid checked due to my back fracture and inability to tolerate most meds.

Will let you know if I magically get any answers on the mysterious anemia.

Appreciate you help,

~donna

 

[catwoman]

Yes, ProCrit is very expensive and they also have found that erythropoitan can cause blood clots (though all the studies were done in cancer patients). They do not want to give EPO shots anymore unless the HGB is below 11- some docs won't give it unless the HGB is below 10. Brian got a shot of Aranesp last time around and his anemia has been good for at least 3 months now - so maybe that is the long acting one.

Last night, I consulted my copy of "Plumb's Veterinary Drug Handbook," which of course is for veterinary use. However, most -- if not all -- of the drugs listed are HUMAN drugs, with adaptations in dosage for animals by species (quoting research behind those dosages).

I checked out erythropoeiten, and read that it's not suggested for use in small animals until the HGB (PCV -- packed cell volume) is in the teens. (Which kinda goes along with the HGB being below 11 in humans.) Mentioned that this is due to the expense of the injections and because 50% of animals -- mostly cats -- can develop antibodies against the drug; this is not a problem with humans. Suggested an injection, followed by a HGB test in 1 week, another injection as needed, hoping to be able to go 1 month between injections.

Also said that -- I didn't write this down and am relying on my memory -- that it's the toxic buildup from uremia that depresses red blood cell production, thus causing anemia in chronic renal failure.

BTW, this vet's drug handbook also has WARFARIN in it. Pretty interesting bedtime reading -- despite the $100 pricetag.

Donna:
Keep us updated on your health. You'll be in my thoughts.

 

[netmiff]

C Q10 per my lipid Dr as I can't take statins or anything else.

Donna: not sure where I heard it, but there may be a possible interaction between warfarin and coQ10, if it is the same stuff I am thinking of. Maybe chech with your pharmacist, do a search on here or start another thread with coQ10 as the subject.

Sorry, I an tired right now, just wanted to let you know that something was rattling around inside my skull and I had to get it out before it gets lost

 

[djacq]

Thanks Jeanette, I think I heard something of this nature also. The prescriber is a Coumadin RN so I thought it was ok. Her plan is to use the Co Q10 to build up my muscles so I can take an old statin at low dose (twice a week) as I get the myoclonis muscle reaction.

I self test so will watch my levels carefully and will look for further info re: interactions.

Hope you get some rest.

~donna