Wednesday, February 20, 2013

A Painful Life

Hemophilia is a blood disorder, not a curse. It is up to the person who is diagnosed with this disorder to determine how he looks at it. From the moment I was able to understand what was different about me, I made the decision to not allow my diagnosis to hinder the way I live my life. While making this decision, I also made a commitment to myself to live a productive life. By productive, I mean a life that would give me joy without necessarily putting me in any immediate danger. These two decisions have led me to where I am today.  

One of the biggest hurdles for me in my life was determining whether or not to treat prophylactically (prophy) or as-needed. Being on the border of severe to moderate Factor VIII deficiency, I was always told by my physicians that I should go to a prophy regimen. But as I said earlier, I was not going to let this disorder control me, so I decided to treat as-needed, and I continue to do so to this day. This decision is one that has had numerous ups and downs throughout my life, but one that I do not regret.  

When I was younger, I was extremely active in baseball, basketball and golf. These three sports, combined with my extreme competitive nature, created a recipe for numerous injuries and accidents. I rarely treated before any big event or game, and if I injured myself, I sucked it up and told myself that it was an injury that any other athlete could have gotten throughout the course of that sporting event. I would then go home, suffer from a sprained ankle or jammed finger, treat myself and move on. As I have gotten older, I actually treat myself less because I’m not quite as active as I used to be in sporting events. However, I do keep in shape and exercise which has always been key to my health for my joints and muscles.  

You can call this being hard-headed or stupid, but this was the way that I dealt with my diagnosis.  I do have pain, and probably more than some hemophiliacs because of my hard-headedness, but I am proud to say that I have always treated as-needed and refuse to allow hemophilia to control me. Instead, I will treat it. This decision is one that is tough to make, but one that each individual in my situation will have to make.


Lovee/ProhphyHolic Hemo Mom said...

Thanks for sharing your story. I'm glad that you took control of your hemophilia and agree it is not a curse. As I read the title, "A Painful Life", as a mother I think I would have to advise my son to do otherwise. I'm starting to believe that each generation views prophy different. When you start prophy at a young age of 1, like both of my sons who have severe hemophilia A, then I feel like prophy is giving me/them the control. So, if they do infuse before they play sports or rough play with friends at a sleepover then they are decreasing their chances of hemophilia hindering their life. By them being on prophy I don't have to pray we will have a bleed free day, like I did prior to them getting on a prophy schedule. So I understand how you refuse to let hemophilia control you, but respectfully I want to teach them how being on prophy gives them the control. I definitely will have him read your story though!

bradmyers said...

Thank you for the comment. I agree with your concept of the different generational views of prophy. However, by the time I was 5 years old my hematologist recommended prophy but my mother has always empowered me to make the decision. Remember, treating a persons hemophilia is extremely invasive and by treating prophylactic you are increasing that invasiveness. Educating your children on the pros and cons is important, but remember that they are the ones coping with the disorder.

Mark said...

There will always be differing opinions and that's why I want Infuzr to be a place for people to share their own thoughts, feelings and experiences. These posts are not Infuzr's beliefs. They are ours (the contributors). Infuzr is just a platform for us to share them. I believe open discourse promotes growth. This post and the comments are a good example of two different views being respectfully expressed and discussed. This is what the community needs. Thank you, Brad and Lovee.

Michael Birmingham said...

Brad, I am a strong proponent of individual rights and responsibilities, so I respect your right to have control over your medical treatment, and decide how and when you should be treated. However, I liken this with the decision to smoke. I would never want to infringe on someone's right to smoke... so long as they are not infringing on other people with their smoking. But there are serious health consequences to what you do. And just like smoking, those consequences are not immediately obvious. You have not given me enough of an idea about your age to say if you have had to deal with those consequences yet, so forgive me if I come across a little preachy. I am a little older, in my 50's now, so I didn't have the option of prophy when I was growing up. I was actually on the leading edge of the on demand home treatment program. Having factor on board before all those minor bumps that kids get means by far less hemorrhaging into joints and synovial membranes that keep joints functioning well. Damage to these areas is slow, and much of the damage is done by the body reabsorbing the blood that has swelled into these areas. At first, it acts like a little arthritis, not a big deal. But later in life, that arthritis becomes unbearable. I, like many hemophiliacs of my generation have had multiple joints replaced and fused because of this damage. I just hate to see others go through what we had to needlessly, when all that is necessary is to raise your factor level, even a little. I totally get that it is invasive, and cramps your style. But you won't believe how much bracing and walking aids will cramp your style later.

"If I knew I was going to live this long, I'd have taken better care of myself." ~Attributed to Mickey Mantle, Eubie Blake, George Burns and Mark Twain (amongst others)

jaqulin said...

Thank you so much for these information. One of my friends were arthritis patient so I suggested her to get stem cell therapy which has become more popular than other treatments. And this treatment is in reasonable cost also.

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