Intravascular hemolysis

Posted by inali @inali, Apr 17 10:54pm

This condition recently showed up in a series of blood tests done by my pulmonologist. He’s referred me to a hematologist, but I can’t get in until July. I’ve searched the web for treatment options but not finding much useful info. Anyone familiar with this issue? What can I expect the progression to look like? Thanks for any advice.

@inali July is a long time to wait to see a hematologist. Members like @pattitoo @mjpm2406 @helen2209 @tayleebuzz @oldkarl @dwlowrance @donlynn @mariabrat @pennyhedgecoth have recently posted to the group and may be able to offer support or information.

May I ask what information your pulmonologist gave you?

REPLY

I am sorry that you are not able to have an appointment earlier. It took 1 month for me to see an hematologist, unfortunately I am not really useful here as I live in Germany so the health system is different. Maybe the other members are more familiar with this conditions?

REPLY

@inali I don't know much about your disease, but maybe I can help a little. Thing is, you can use this time to get yourself ready for the appointment. First, check out what the best online sources have to say about it. Google, Wikipedia, Mayo. Take lots of notes. Then go to the NIH (national institutes of health) and NCBI ( or is it NBCI-I can never remember), especially OMIM.org. Enter the name of your disease, and, if they have it listed, it will pop up with a lot of info. Nose around until your appointment comes, Then you will be ready for the Hematologist. But, in today's world, you have to be your own best doctor. I have had my whole system gone over by the Mayo folks and 20 other fine clinics, but the best medical work has come from my time with these resources. I can not make the formal diagnoses, but I can get into the right area. And get your whole genome sequenced by a good DNA group such as LivingDNA.com, Sequencing.com, Nebula, Ambrygen, or any of the others. It costs about $400 for the groups to sequence the whole genome, and another $200-300 if you want them to interpret it. But you can do that yourself if you want and are willing to study. Then you will REALLY be ready for your appointment. I have several pathogenes, including Gelsolin, Fukatin Limb Girdle Dystrophy, Sjogrens, many Cancer locations, Diabetes II, and all their little related so-called "minor" inconveniences and death traps, but after this work by myself and my clinics, I KNOW what I have and what to do about it. Have fun. I can bore the H___ out of anyone, including the neighborhood busy-body and my pastor.

REPLY
@oldkarl

@inali I don't know much about your disease, but maybe I can help a little. Thing is, you can use this time to get yourself ready for the appointment. First, check out what the best online sources have to say about it. Google, Wikipedia, Mayo. Take lots of notes. Then go to the NIH (national institutes of health) and NCBI ( or is it NBCI-I can never remember), especially OMIM.org. Enter the name of your disease, and, if they have it listed, it will pop up with a lot of info. Nose around until your appointment comes, Then you will be ready for the Hematologist. But, in today's world, you have to be your own best doctor. I have had my whole system gone over by the Mayo folks and 20 other fine clinics, but the best medical work has come from my time with these resources. I can not make the formal diagnoses, but I can get into the right area. And get your whole genome sequenced by a good DNA group such as LivingDNA.com, Sequencing.com, Nebula, Ambrygen, or any of the others. It costs about $400 for the groups to sequence the whole genome, and another $200-300 if you want them to interpret it. But you can do that yourself if you want and are willing to study. Then you will REALLY be ready for your appointment. I have several pathogenes, including Gelsolin, Fukatin Limb Girdle Dystrophy, Sjogrens, many Cancer locations, Diabetes II, and all their little related so-called "minor" inconveniences and death traps, but after this work by myself and my clinics, I KNOW what I have and what to do about it. Have fun. I can bore the H___ out of anyone, including the neighborhood busy-body and my pastor.

Jump to this post

Thank you @oldkarl for your reply. I appreciate the tips you’ve shared and I’ll check them out. I struggle with keeping a good attitude about all this. One day I just want to hide my head in the sand and pretend nothing is wrong (I.e. a bad day), and the next I’m reading everything I can get my hands on (a good day).

REPLY
@inali

Thank you @oldkarl for your reply. I appreciate the tips you’ve shared and I’ll check them out. I struggle with keeping a good attitude about all this. One day I just want to hide my head in the sand and pretend nothing is wrong (I.e. a bad day), and the next I’m reading everything I can get my hands on (a good day).

Jump to this post

Hi @inali
Hope you’ve had your appointment by now and have gotten a few answers. Hope all is well.

REPLY
Please sign in or register to post a reply.
  Request Appointment