The Blood Is The Life

So one random day at work last August I felt a little tired and really winded walking up the hill to the parking lot at work.  When I got home my wife of 2 months (we were marred in June of 09) said I didn't look well.  The next day when I went to work everyone told me I looked yellow and that I should go the the doctor.

Friday August 25th I went to the urgent care after work and was immediately rushed into a back room, hooked up to an EKG machine and had blood drawn.  I thought they were going to come back and tell me that I was fat, out of shape and had high blood pressure and give me some pills and I would be on my merry way.  How wrong I was!

That night I was taken to the hospital where they performed all sorts of test, more blood drawn and found my levels to be around 4.5.  I have immediate trans fusions and found out I had AIHA.  The name alone scared the hell out of me and definitely scared my new wife.  This disease hit me like a ton of bricks going from one of the happiest times of my life with the wedding and honeymoon and coming back and being married for less than 2 months going into the hospital and I had never been sick before or EVER in a hospital for anything.

The Doctors put me on extremely high doses of pregnosone and said I had to stay in the hospital for 2 weeks to hopefully allow the steroids to work.  2 weeks and several blood trans fusions later and there was  no improvement.  The doctors decided to transfer me to the Mayo Clinic as I live in MN to see a hematologist.  

When I got to the Mayo Clinic I was in St. Mary's where they said they were going to try another steroid to see if it would stop my anemia.  By this time I felt terrible and I was urinating blood and coca cola color daily.  I had more needles stuck in me than a heroin junky and more blood transfusions.  After 2 more weeks it still was not working and the doctors said they had to take more serious measures.

The Doctors decided to remove my Spleen and said they would remove it laproscopiclly.  I made it through the surgery and all I remember was complaining of being thirsty.  Several hours later the doctors rushed into the room and said I was bleeding internally and that I had to go back to surgery.  I lost over 2 liters of blood in the second surgery and have a scar from my sternum to my kidney area.  The second surgery not only tried to correct the bleeding but also caused more harm.  I had complete kidney failure and bowel failure.  They then took me into a third surgery to put a dialysis port in my neck.  

I was in the Mayo for 4 more weeks so now I had already been out of work for 2 months.  With daily walking and starting to get better the doctors said my anemia was in check and my levels were coming back up.  They let me go home to recoup with out patient dialysis.  4 Days after going home from the hospital I woke up at 2 in the morning feeling like I was being squeezed with every breath and it was like a belt tightening around my chest.  I tried to tough it out but woke my wife up at 5 to bring me back to the hospital.

I went to the emergency and they found out I had bled again internally and also had blood clots in both lungs.  I was in the ICU for 3 weeks and then was finally released.

After 2 months of out patient dialysis my kidneys started to work and I got the ports removed. It has been almost a year since the event and I am feeling OK.  Thank God I lived and didn't die on my wife in the first 2 months of marriage.  

Things this has taught me:

First most teaching hospitals get their new residents in July and August.  If you are going to a teaching hospital make sure to ASK for the Doctor to do the surgery specifically and not have any residents touch you as they are green and definitely have no clue besides some book smarts and labs.  There is a reason they call it "practicing medicine".

Second.  Get physicals every year as I didn't go to the doctor for anything prior to this and you can bet I will be getting physicals every year from now till the time I die.  

Third make sure you have someone in the hospital with you for every Dr talking  to you or get a tape recorded and record everything they say!!!!!!!!!

Fourth... be your own advocate!

The scary part of this for me is that it can come back at any time according to my doctors and they have no idea what causes the disease in the first place.  

I hope my story sheds some light for some people and if you have any questions don't hesitate to ask.  After spending 3+ months in the hospital anything that I can do to help someone else with this terrible disease and/or avoid what I went through I would be happy to help!  Wouldn't wish this on my worst enemy.

By the way this can strike anyone I am only 28!

JonDD1 JonDD1
26-30, M
3 Responses Jul 26, 2010

hi this is very inspring to hear bc currently my 11 yr old son is hospitalized with this and he is very severe in icu he just had his spleen removed and his hgb continues to drop

When I first got the the hospital I was on doses around 150 mg a day. After all the surgery they brought me down to about 75 and progressively walked me down from there. So I am not on any medication currently. <br />
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The one thing I forgot to ask and didnt find out was if AIHA shortens life span at all. Anyone know the answer?

Wow, quite the ordeal for you! Your advice is good, particularly to have someone else always around when speaking to doctors. Especially early on when you are very weak, in shock from this happening to you and less coherent. I did this all but once earlier on, and it caused some problems. <br />
Very bad luck for you with the complications with regard to the surgeries. Did you stay on the Prednisone? If so for how long?