cbarnett

am new to the board and I am looking for some input from those we can relate or offer advise.
My husband now 32 has been in poor health since Sept 1997. Started out having chronic fatigue, painful goute episodes in his feet, and abdominal pain. Blood work results showed his liver enzymes were elevated. SGOT in the 60s and SGPT in the 60s. His doctors told him he needed to stop drinking and then have the tests repeated. The honest truth being that he does not drink (or smoke) AT ALL. His HEP profile came back negative. So the doctors decided to wait 6 mths and see what happened. We really did not feel like anyone was taking seriously what was going on with him. In June 1998, he developed a bad case of shingles. By this time his fatigue worsened to the point that he could not function at work and required alot of sleep. In September 1998 he presented to the ER with bleed from the pores of his legs and blue/cold feet.

His blood work showed that his liver enzymes were normal but his platelet count had dropped to 5,000 (normal being >140,000). He was treated for thrombocydopenia until his red and whites cell counts started dropping. He was seen by Hemotologists at Shands' where a bone marrow biopsy showed that he had Aplastic Anemia. They felt that his condition was secondary to the liver problems that he had been having. But because his liver had returned to normal they did not investigate.

He was not a candidate for bone marrow transplant, so he was given ATG and Sandimmune in October 1998. He went into complete organ failure on the 4th day of treatment and was on life support for 2 days. Once they discontinued the treatment he started recovering more quickly than expected. His organs returned to normal function within 7 days. His bone marrow did not respond as quickly, his white cell count did not get to 2 until mid February 1999.

He his cell counts improved slowly, he was dependent on weekly red cell transfusions until December 1999 and biweekly platelet transfusion until May 2000.

While we were very pleased with his miraculous recovery from the ordeal, we have continued to be suspicious of the cause of his problems. Even with normal blood counts he has continued to have chronic fatique, abdominal pain, minimal bruising and bleeding. In January 2000 he was diagnosed with Type II diabetes.

In October 2001, his liver enzymes became elevated again. The SGOT in the 60s and SGPT in the 80s. His liver panel came back negative. His doctor felt it was due to his weight (he is 5' 11" and 250 lbs), possibly fatty liver. In December 2001 his liver enzymes were SGOT/SGPT in the 60s, so they did an ultrasound. Which showed :

INCREASED ECHO TEXTURE LIVER THROUGHOUT LIKELY FATTY INFILTRATION OF LIVER. MILD PROMINENCE OF SPLEEN SIZE.

With this his doctor dismissed further investigation. I felt very uncomfortable about this. In October 2002 his liver enzymes were back up, SGOT of 70 and SGPT of 121. His doctor ordered a battery of liver tests which I have no idea what they were but we were told that they looked ok. About this time he started having painful goute in his feet again. It was more sever and lasted longer than in 1997.

So I decided that I was not going to let the doctors just wait for him to get deathly ill again before doing something. I really feel like no one can see that there is some connection between all these things that are going on and that they are not all independent of each other. I just can't "not worry". I called the doctors at Shand's and made an appointment to talk about what was going on. Thankfully because they had seen him before they got us an appointment within a reasonable amount of time. We scheduled to see them the first of January 2003.

During November and December 2002 my husband started to have uncontrolled blood sugars and extremely painful arthrisis type pain in his hips, knees, and shoulders. His started seeing an endochronologist the first week of January 2003 and was put on insulin to get his sugars down from the 500s.

We saw the doctors at Shand's last week. After going over everything that had been going on they decided to have him screened for hemochromatosis. Unknown to us, his iron level was "somewhat" elevated.

I had never heard of hemochromatosis (HH) before and have started reseaching. To tell you the truth...IT HAS SCARED THE @#$% OUT OF ME!

Not only does he have so many of the symptoms, so does his mother and father.

Mother:
Elevated Liver Enzymes (no HEP)
Diabetes
Unexplained Abdominal Pain
Bronze Colored Skin

Father:
Liver Disease (No HEP)
Diabetes
Congestive Heart Failure
Sever Arthrisis

Shand's called back on Friday to tells us that his serum ferritin level is 1653 (normal <300)and his liver enzymes were back down to SGOT of 37 and SGPT of 67. Doctor said that his not sure that my husband has HH because the ferritin level is not that high. He said it could just be fatty liver and fibromyalgia or even just an autoimmune problem. They are going to wait on the DNA tests to come back and then decide if he needs to see a liver specialist for biopsy.

Sorry to be so long winded, but writing about all of this is really helping me deal with the stress. It has been so hard to just watch the person that I love be so sick at such a young age. Just as begin to tell myself that he is getting better and life will be normal again something goes out of wack.

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Cheri


[This message has been edited by moderator2 (edited 01-15-2003).]

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Cheri