DELICATE THUNDER

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 Hope

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Then I meet Dr. X in the hospital after my TIA. I immediately called his office and made an appointment for the first date he had available after my being released. At our appointment I am sure he was simply expecting a follow up visit. But instead I told him my story. I had copies of all my records. I showed him my blood panels, all my files, my notes from other doctors. I showed him everything I had.It was to say the least, more than he was prepared to deal with in a fifteen-minute appointment. But he was intrigued. He agreed to look over my records and my research. He was a forward thinker and he was open-minded to my ideas. He asked me to give him two weeks to think about it and do some research on his own. During those two weeks I dropped off more articles and research papers at his office almost daily. When we met two weeks later he agrees to help me. He wanted to start out slowly to see how my system responds. Elation and relief flood over me. I have new found hope!

 

We start off that day. He prescribes:

• Androgel 5g (testosterone gel) for daily application.

• He also speaks to my cardiologist who agrees to take me off of Digoxin .25mg daily.

 

I used the Androgel 5g for one month, and the results were:

• A very small increase in my total testosterone from 56 ng/dL to 72 ng/dL (reference range; 241ng/dL to 827 ng/dL) and

• A small rise in my free testosterone from 1.2 ng/dL to 1.5 ng/dL (reference range; 8.7 ng/dL to 25.1 ng/dL).

 

Dr. X decides we need to switch to injectable 200 mg/cc testosterone depot.

 

We start out at 150mg every two weeks, which he administers at his office.

• Total testosterone increases from 72 ng/dL to 155 ng/dL (reference range; 241ng/dL to 827 ng/dL),

• Free testosterone increases from1.5 ng/dL to 4.2 ng/dL (reference range; 8.7 ng/dL to 25.1 ng/dL).

 

I begin to feel a little better. I have more energy and I am no longer as lethargic. I begin doing light exercise again, walking, stretching, doing whatever I can to be active.

 

After another month Dr. X increased my dosage of testosterone again to 200mg every 10 days with the following results: 

• Total testosterone levels increase from 155 ng/dL to 295 ng/dL (reference range; 241ng/dL to 827 ng/dL),

• Free testosterone increases from 4.2 ng/dL to 10.2 ng/dL (reference range; 8.7 ng/dL to 25.1 ng/dL).

 

We stay at this level for approximately a year with continued gains: 

• My LVEF increases from 27% to 33%. That’s a 5% gain.

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I was hoping for more. I feel better, but I still fatigue easily and I am short of breath quite often.

 

Milestone

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I have officially made it past the eighteen months I was given to live, I am of course thrilled about that. At this point, no other doctors believe that what we are doing has anything to do with my still being alive. There is a margin of error of 5% either way with the echocardiogram and the MUGA scan so we have no proof that the hormone therapy has helped. My heart has shown marginal improvement but nothing that would cause our research to be taken seriously. But Dr. X was steadfast, he believed as I did that we were on the right track. I continue to exercise all that I can and eat a healthy diet.

 

During this period Dr. X runs consistent complete metabolic panels on me including the test for IGF-1 that I wanted to have last year: the results are as I expected.

 

• Serum Insulinlike Growth Factor I: level is low 109 ng/mL [reference range: 249 to 290]

 

Just to be sure Dr. X runs a:

 

Growth Hormone Stimulation Test (using levodopa, 10mg/kg by mouth) to evaluate for possible adult onset GH deficiency.

GH measurements are obtained at 0, 30, 60, and 120 minutes with the following levels: 0.2 ng/mL, 0.5 ng/mL, 2.4 ng/mL, 2.2ng/mL, respectively. Normal response is GH greater than 5 micrograms/L, the test indicates GH deficiency.

 

New Diagnosis

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Based on these results he assigns me a 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

 

I would love to say that my health got instantly better, that I had no more symptoms and I was immediately cured. But in fact I felt no change at all for several months. This made me more fearful than I had felt in quite a while. I had pinned all my hopes and dreams of a future life, on this therapy working. Worse yet, if it failed, had I wasted the last precious months of my life on a lost cause? I refused to let myself become despondent. I knew HGH was not a racehorse drug. I knew it took time to work.

 

And sure enough, ever so slowly, I started to notice that I was not getting winded as easily. That I was not getting dizzy as often. Day by day I noticed that I was feeling better. I noticed that I was able to exercise daily, and I was even able to go to the gym regularly.

 

My next MUGA scan was not until October 2003 with these results:

• My LVEF was now showing as 42%. That is a gain of 9% in just six months.

• The report also stated that my left ventricular wall had thinned and had a much more normal appearance, and

• There was no longer any blockage of my aorta.

 

My Cardiologist was speechless. He no longer denied the feasibility of hormone therapy. But he did not accept it either. He wanted to hold his judgment for the future. That was an amazing moment for me. I was feeling really good by this time and things were only getting better.

 

In April 2004 I have my next MUGA scan with these results: 

• My LVEF is now reading at 49%. That is a gain of another 7% in six months, and a total gain of 15% in 12 months.

• The report further stated that my left ventricular wall appeared to be normal in size and shape.

I am now running or walking daily. I go to the gym five days a week. I feel great.

 

Unexpected Results

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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 continues to increase steadily (there is a more complete list of my LVEF studies in the Test Results section of this site).

• From this point on my IGF-1 levels are tested and are kept in the 216-ng/mL to 440-ng/mL range.

• Testosterone dosage is also adjusted and kept at trough testosterone levels in the middle of the physiologic range (reference range; total testosterone 241ng/dL to 827 ng/dL).

 

In February, 2007 I switch from Somatotropin (HGH) to Genotropin (HGH) which is manufactured by Pfizer. We continue with the same dosage of 0.4 mg nightly. The only major difference is that the Genotropin comes in pre-loaded syringes.

 

In August 2007 I have an echocardiogram that shows my LVEF is at 58%, which happens to be the average LVEF for a male in the USA. I have never felt so happy to be average.

 

In May 2008 I have a MUGA scan with these results: 

LVEF has climbed to 67%. That is a 9% increase in nine months. That also puts me 9 % above the average American male.

 

In December 2009 I stop taking Plavixx 75mg. I start taking one 325mg aspirin daily.

 

In February when my blood is tested again my platelet levels are slightly below the normal level. We change my dosage of aspirin to 162mg of aspirin per day.

 

Two months later when checked again my platelet levels are within normal levels.

 

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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*Due to legal and proprietary laws, all information regarding VDJR808 has been removed from this site. The test results and other pertinent information is accurate. Once the research phase of the trials are finished and the drug is available to the public, I will be able to return this information to this site.