Lessons on Prophylaxis

Jonathan_&_Carla_Profile_Pic

My name is Jonathan and I have severe Hemophilia A. I am 31 years old, married to the love of my life, have four kids, and I am a Financial Advisor. I have a real passion for the hemophilia community and am constantly looking for ways to give back. My wife and I started a Non-Profit Foundation called “Hope for Hemophilia,”and are constantly working on ways to reach out to others in this growing community.

This past year we started a web site designed to help connect the community even more by utilizing social networking technology. The site is www.hopeforhemophilia.net. We hope that ultimately this will become THE web site for the hemophilia community.  This site will ultimately help people living with hemophilia to gather and develop information through life-giving relationships. We envision this being the main point of gathering for the hemophilia community because we are so spread out geographically.

Over the past couple of years, I have had the opportunity to travel and speak at many different hemophilia related events. As I have traveled, I have seen a wide variety of approaches to individual care, not so much on the part of HTC’s, but rather variety in terms of what individuals themselves are doing in  managing their own care. One of the first questions asked is “Do you prophy dose?” Which is slang for “Do you treat prophylactically?”

I have heard many different thoughts and ideas about prophylactic treatment, versus on-demand treatment, from nurses, doctors, manufacturers, home health agencies, and caregivers. However, I would like to take a moment and offer a few thoughts from one patient’s perspective. Please keep in mind, I am assuming that your Doctor or HTC has recommended you as a candidate for a prophylactic regimen.  I always recommend that you seek the professional advice of your health care provider before making any changes to your treatment.

Many people focus on the inconvenience of infusing, but what about how convenient it really is. Compared to what was available 10 years ago, we have a very streamlined process.  Most of us are VERY fortunate that we have factor readily available, and given our circumstance, I think it is worth taking advantage of.   If your doctor and HTC agree that you are in fact a candidate for prophylaxis, then by all means, do it!

Most people don’t realize that EVERY time you bleed into a joint, it damages and therefore weakens your joints. This is important because each time you don’t infuse you are placing your future health at risk. Steven Covey, a well respected author, says that we often address the urgent rather than the important. This is interesting when discussing this concept because for those who only treat on-demand, I believe they are letting the urgent (the activity, or the bleed) become the thing they pay the most attention to, rather than paying attention to the important (prophylactic treatment and/or joint health and preventing bleeds). You see, when we don’t treat regularly, we end up with damaged joints that can NEVER fully recover. Something is taken from you that you can’t regain! Something is PERMANANTLY removed from the health of your joints.

What does this mean in “real” life?  As I said earlier, I have four beautiful children! I have had two ankles fused and 6 surgeries to correct joint damage. As you can imagine, all of this was done during times of potential promotions at my job, during babies being born, during holidays, etc. At times, it has caused me to be limited in my activity and involvement in my children’s lives. I don’t share that as a sob story, only as a realization that life activities go on, whether you are able to or not. There are many things that I have wanted to do over the years that I have not been able to do, because of  limitations due to joint damage. Probably the most impacting, is not being able to wrestle with my kids the way I always dreamed of. This has taken a huge emotional toll on me directly. It has taken quite a bit of encouragement from loved ones and some professional counseling at times, to overcome.

I am a financial planner, as I said earlier, and many times people start off with a great plan in place. They know they would like to retire at 65. They start a plan when they are in their 30’s and start dreaming or imagining what they will do once they retire.  Most often, what happens between someones mid 30’s and their mid 50’s is amazing. They realize that the urgent took presidence over the important. They didn’t stick to the plan. They didn’t save a little along the way. They didn’t do what they COULD have when they had the opportunity.

I am concerned that during the transitional periods of patients taking treatment into their own hands, they stop treating prophylacticaly. Many of the kids in the community today grew up on some form of prophylactic treatment and as they are growing up, I believe it is imperative that we as a community continue to help them understand the reasons and benefits of keeping their joints healthy. I know of patients today who had perfectly healthy joints when they were young and are graduating college today with target joints. So when they are getting ready to start their careers or are getting married they are already having to deal with chronic bleeding.  In a time in their lives when they should be the most active, they simply have to slow down. This just doesn’t have to be this way.

Many HTC staff members promote prophylactic treatment as a way to help patients enjoy a relatively healthy and normal lifestyle.  Much like the financial planning example, though sometimes people start out with great intentions, then the urgent takes precedence over the important and it effects their lifestyle. If we are not careful we will have a community full of  “once upon a time” patients with stories of high school successes, and career failures.

I believe that the future is bright for our community. Easier treatments will evolve, but for the time being, Carpe Diem (Seize the day!) Set yourself or your child up for success. If they need encouragement or help, let someone in the community know. There are more and more of us that are older, that can act like big brothers and help them understand the importance of the little decisions along the way.  Help yourself, friends, children, patients understand the reasons behind infusing regularly. I believe that so many of the patients who are in transitional periods of life, stop infusing or following what they were told because as children they were told “you must treat regularly, rather than taught why they should infuse regularly. However, it is imperative as they grow older that we, as a community,  help them understand the “why” behind prophylaxis.

2 Responses to “Lessons on Prophylaxis”

  1. I am 39 and severe. Obviously growing up severe without prophy has now caused a life time of pain and agony. So parents keep your kids juiced up, keep them exercising. I only have one fused ankle and very little other joint damage and I attribute this to a life time of staying fit which strengthens joints and ‘hardens’ muscles. and just recently started an every other day prophy dose. One thing I learned quickly was that the prophy dose was a little on the low side. I asked doctors and the truth came out that when they come up with a prophy dose they only are looking to keep you from spontaneous bleeds, so only up your factor level to around 40%. This I found for me was not enough to stop bleeds given my extremely athletic lifestyle. I got them to up my prophy dose to the 70% level. Now I work out hard. Yoga 3 days a week combined with hard weight lifting and lots of wrestling on the floor with kids, and no more bleeds. My advice is to do prophy and pay attention to the dose, it could be too low if you are actively hurting yourself all the time. 🙂

  2. Your article was very inspiring, I can relate to what you are saying. My father who is now 71 has severe factor VIII and all of the other issues from the late 70s and early 80s. He was born too soon as he states. There was no factor during the early years and that is why now he needs all his joints replaced. He now takes his medicine 3 times a week and if needed for a bleed an extra dose. However my sister who is now 35 is also a hemophiliac but not as severe as our father. She was not diagnosed until 5 years ago. She only needs factor for surgery so far. I am also a carrier. My entire family is very active in the Hemophilia Community for as long as I can remember. My parents starred in a movie titled Unexpected Life. It is a movie for Hemophiliacs over 50 years old. Hope everyone is well and make sure you listen to your doctor and caregiver.


Leave a Reply

You must be logged in to post a comment.