Hemolysis

[Lisa G]

I'm new.

My husband (48) had a St Judes Mitral Valve put in during June. He has been dealing with hemolysis ever since. Jim has been tranfused with 4 units since the surgery but seems to be holding his hemoglobin steady for the past 2 weeks (9.3). I can really sympathize with his fatigue because 2 years ago, my Hemoglobin was 6. Anyhow, he is taking Trentel to help his red blood cells become more elastic and survive the "chewing up" of the RBCs. His urine is the color of coffee most of the time (blood) but his Hemotologist says that his blood is definiately lysing. He has had everything imaginable checked-Renal, Digestive, Echo cardiagram.

I was wondering if some of you have dealt with this problem?

The cardiologist seems to think that the problem will correct within the next month or so. Anyone have any info on that??

Thanks,
Lisa

 

[Ross]

Hi Lisa and welcome to the forums.

While I don't know of anyone first hand, with 1100 plus members, I'm sure someone has had this problem and will be around to address it. I know I had some troubles that did straighten out on their own. Took a while, but it did happen.

Give the others time to weigh in. It's slow on the weekends around here, so hang tight.

 

[Nancy]

Joe has hemolytic anemia (hemolysis). He has two mechanicals, and one of them is very, very old. It is probably the culprit, however, having two mechanicals can definitely chew up the blood for some people.

He's been dealing with it for many, many years. No one paid much attention to it until it became critical several times, requiring transfusions. And his spleen became very enlarged.

Finally, a hematologist was called in and things started to turn around for him. He takes iron three times per day, Folic Acid, prescription strength each day and ProCrit injections which I give to him at home twice a week, and sometimes three times per week, depending on his labs.

He has lab-work very frequently.

His blood chemistries remain pretty good for his conditions. His red blood cell count is normal, his platelets are slightly low, and drift up and down. But he hasn't needed any transfusions in many years.

ProCrit is the main thing that has helped him. There is also a longer lasting form of ProCrit called Aranesp. Both are expensive, but the Procrit is covered by his drug plan, probably Aranesp too.

If the current hematologist isn't getting anywhere with the situation, think about another opinion.

It took a long, long detailed workup to determine that hemolysis was what was really going on.

Anemia can make you feel terrible, listless, and even give you some confusion. It also impacts other medical problems. So it has to be gotten under control.

Several doctors have told up that getting multiple transfusions cause problems as well, since they can transmit some illnesses that aren't checked for, and they change the blood chemistries slightly with each transfusion, making subsequent transfusion more difficult in the matching department. That has been true for Joe. He is now a difficult match, and blood has to be ordered way in advance for him. There seems to be one person about 500 miles away who is the closest match. One time, when it became an emergency, the blood had to be transported by cab from that location, since the blood bank couldn't accommodate Joe.

See about getting him some better help.

 

[Lisa G]

Thanks for the welcome Ross.
It's really good to hear what others have to say. Nancy, it sounds like your husband has the same thing that Jim does. No one has mentioned Procrit but I think we will call the doc on Monday to ask about it. I had iron IVs 2 years ago; many of them in fact. But it wasn't Procrit.
Thanks for the info!
Blessings,
Lisa

 

[hensylee]

my ex did not have any heart problems, but as a young man, it was discovered he had hemolytic anemia and his spleen was VERY enlarged. The hemolytic anemia was traced back in his family and the doctors decided it was transferred from generation to generation. My children also have the tendency but no symptoms (two out of 3 of them). The answer for him was to have the spleen removed, which was done, but he still has episodes just like he did BEFORE the surgery and that is flu like symptoms of ague (chills/fever). He seems to be living to a ripe old age, so I guess the surgery was the answer for his. Don't know if this has anything to do with your situation or will help in any way. Blessins...................