Polycythemia Vera Therapy

After the Diagnosis

 

When I was diagnosed with HCM and shortly thereafter with polycythemia vera there was no cure for these diseases (nor is there now). A lucky few people simply get better after being diagnosed with HCM. I was not so lucky. The best therapy the medical community had to offer was phlebotomies and drugs that made me feel like the walking dead.

And, this all came after starting treatment with the best medicine money could buy. It was like being on a roller coaster from hell.

 

Now lets not forget that this all started because I had had a few dizzy spells, I was tired, and I had fainted a few times. Aside from that I had never felt this bad. Before my diagnosis I was exercising daily. I was in good physical and emotional shape and I was happy. But after only one month on the standard drug therapy I was miserable. After several months I felt so exhausted and fatigued that I thought I might die even sooner than predicted. The standard therapy was just not working for me.

 

When my first hormone panel was done (accidentally) none of the doctors paid any attention. The results are listed below.

 

Laboratory blood results after diagnosis of polycythemia vera:

 

  • Testosterone levels: very low

  • Total Testosterone: 56 ng/dL (reference range; 241ng/dL to 827 ng/dL)  

  • Free testosterone: 1.2 ng/dL (reference range; 8.7 ng/dL to 25.1 ng/dL)

  • Follicle Stimulating Hormone: less than 1.0 mIU/mL (1.5 to 9.3)

  • luteinizing hormone: 1.1 (1.4 to 18.1)

  • Prolactin level is normal
     

The doctors all told me that it meant nothing, that my low testosterone levels were the result of my heart disease. But I thought it might be the opposite, I thought my heart disease and blood disease might have been caused by my extremely depressed hormone levels. But doctor after doctor, scientist after scientist tell me that I am wrong.

 

New Diagnosis

Based on test results under a low testosterone treatment plan, Dr. X assigns me a new diagnosis of: Idiopathic hypogonadotropic (hypothalamic-pituitary) failure; Patient has gonadotropin deficiency resulting from a defect in gonadotropin-releasing hormone (GnRH) secretion. (8)

 

Since cardiomyopathy and polycythemia vera are associated with adult-onset GH deficiency, three months later in April 2003, Dr. X starts me on subcutaneous somatotropin 0.4 mg (1.2IU) injections nightly.

 

At this point I am prescribed and taking the following drug therapy:

  • Somatotropin (HGH) 0.4 mg injection nightly

  • Enalapril 5mg daily

  • Plavixx 75 mg daily

  • Testosterone depot injection 200mg every 10 days

  • Teslac 75mg daily

  • Metroprolol 75mg daily

  • Atenolol 75mg daily

 

Unexpected Results

It was also at this time that I noticed something unexpected. My polycythemia vera was getting better. For nearly three years I had been making weekly trips to the blood bank to get pints of my blood drained and thrown out. There was no other way to keep it from getting too thick. But now my hematocrit level was steadily falling. Neither Dr. X nor myself had realized the impact that our therapy would have on my polycythemia vera. Within a few months I would never need another phlebotomy again.

 

In May 2004 I stop taking Atenolol XL 75mg. My therapy now consists of:

  • Somatotropin (HGH) 0.4 mg injection nightly,

  • Enalapril 5mg daily,

  • Plavixx 75 mg daily,

  • Metroprolol 75mg daily,

  • Testosterone depot injection 200mg every 10 days, and

  • Teslac 75mg daily

 

In August of 2004 I have my last phlebotomy. My hematocrit level has fallen to an average of 44. My battle with polycythemia vera has come to an end.

 

My LVEF remains fairly steady, around 65% from May 2008 forward.

 

In August 2011 I stop taking Enalapril 5mg. My therapy now solely consists of:

  • Genotropin (HGH) 0.4 mg nightly injection

  • Metroprolol 75 mg daily

  • Testosterone depot injection 200 mg every 10 days

  • Aspirin 162 mg daily

 

As of October 2011 my heart is strong and I am non-symptomatic for cardiomyopathy or polycythemia vera. My LVEF tests at 65%. I continue to work out and do cardio most every day.

 

So, I have won. I am alive. I am grateful for my life and my family. Yet somehow through this terrible ordeal I have been changed for the better, I have been humbled. Before this, I somehow thought that I was the most important thing in the world, the center of my known universe. I now realize that it is not me that is important. It is those that I love. It is the way that I treat the people I meet, the animals I come across, even the planet itself.

 

People ask, “What is the meaning of life”? Philosophers spend years pondering this question. There have been thousands of poems, sonnets, and books written about it. Well through this journey I have found the answer to this question in its simplest form. The meaning of life is love. Learn to love, and allow yourself to be loved in return. I am not the first to figure this out. But it amazes me that I am not the last.

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