Living with Hemachromatosis 2

hemochromatosis-8-728Continued from first blog.

After the holiday I contacted my doctor about the failed attempt for the Phlebotomy and asked for a new corrected script.  I was told to go to a different lab…an actual blood donation center … and that they preferred I went to the Hematologist for the prescription.  So I contacted the Hematologist who insisted on yet another appointment to write the script.  To shorten this part of the story, I went to the appointment got the script.  The next day I scheduled a baby sitter for my foster infant and went to the blood center.  I registered, went back and was told a “preliminary test” had to be done according to the script.  They did the test and said I didn’t qualify for the bloodletting because my Hemocrit is 38%.  I truly did not understand what they were saying and why.  I asked if my Ferritin level had miraculously gone to normal!  I was told no it didnt have anything to do with that.  The nice woman said I could keep coming back everyday to see if the Hemocrit level changes, that it has to be 46% minimal.  OR I can get the doctor to rewrite the script for a lower percentage which some do.  Disappointed again I leave without the procedure.

I call the Hematologist.  The nurse informed me that the doctor will not write a script for a Hemocrit less than 46%.  Still not understanding this Hemocrit stuff I turn to WebMD again.  Hemocrit = blood volume, 37%  = anemia.  Why could they have not just explained this to me in these simple terms?  I know what anemia is, I understand that if I’m almost anemic I can’t have more blood taken!!  But wait a minute, this is not good news.  I have Hemochromatosis, my Ferritin level is too high and is beginning to cause liver damage, and the treatment bloodletting, is not an option for me because I am also borderline anemic.

Rheumatologist appointment is finally here.  He opens the file and goes over the lab results with me and provides a good exam of my joints.  He tells me the good news is…I don’t have Rheumatoid Arthritis or Lupus!  Yay!  The bad news is…I have Hemochromatosis induced Osteoarthritis which is more intensified than the basic.  Okay, so what is the treatment?  The Doctor shares with me, there is none.  He says to continue to take ibprophen and eventually I will have to endure joint replacement surgeries.  If the symptoms increase I can contact him and we can discuss a different pain option.  But for now have my regular doctor continue to prescribe the prescription strength ibprophen.  I ask him if ibprophen is hard on the liver (mine already being compromised) he said not really unless taken in large doses.  He said he will see me on an as needed basis and to follow up with my regular doctor.  End of appointment.

Back to my “regular” doctor for a follow up visit to discuss all the results from the Hematologist and Rheumatologist.  DOCTOR; So your fatigue is caused by Hemochromatosis, which inturn has caused Osteoarthritis, mild liver damage, borderline diabetic, increased iron levels, enlarged red blood cells and depression.  Bloodletting can’t be done because your basically anemic.  I wish there was something I could do for you, but there is nothing.  ME;  So are you telling me this is my life from here out and I am not going to get any better and there is no treatment?  DOCTOR;  “Well the good news is your not going to die today, the bad news is each day forward is going to be your best day”.  ME:  So let me make sure I am understanding you correctly, today is the best day of my life because each day I live is a progression in the disease and the subsequent diseases that are caused by it?  There is no help or cure, this is just what I have to live with?  DOCTOR;  Correct.  The only other treatment I know of is a particular injection they can do, but only in extreme severe cases and your not there yet.  The bloodletting is the tool they use to keep the iron levels down, but since you can’t have that done there is no way to get the iron level down on it’s own consistently.  I wish there was more, but there is not.  Come back in six months and we will check your blood levels again with labs.  So I ask the Doctor about the ibprophen the Rheumatologist wants him to prescribe for the pain in the joints.  He says he will prescribe it for me no problem, but to try not to take it everyday because it can cause damage to the liver.  Wait! Back-up here!!  Didn’t I ask the Rheumatologist about that??  Didn’t he say it wasnt really a problem?  Didn’t I doubt his response?  NOW this Doctor is saying it could be a potential problem…does anyone really know what they are doing or care about my health??  This is so discouraging.

The stunning reality of the multiple Doctor appointments and tests are slowly creeping in, but I admit this is hard to digest and my mind does not want to accept it.  We can transplant hearts and limbs, but we dont have a valid method for getting too much iron out of a persons blood.  In case I didnt mention it earlier, the problem with too much iron in the blood is that it saturates and attacks a persons vital organs destroying them and causing pain and death.  Basically its a long term death sentence.  I am struggling with this emotionally.  But there is some good news, my husband and I had a really good doctor we both thought highly of and had confidence in.  We were no longer able to go to him because of Insurance (not being in the network), we just found out that he now accepts our insurance!! So I will be going back to him, thankfully.

I will continue to write about my daily life and journey with this disease, It will be titled “Living with Hemochromatosis 3”  It will be an ongoing blog so be sure to check it for updates to whats going on.  I also encourage feedback, especially if you are familar with this disease and have knowledge to share.  Company is usually a good thing.  God Bless you.


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