Hemophilia – Help heal more than the physical

What if I told you the hardest thing about living with a genetic bleeding disorder, like hemophilia, isn’t the joint damage, the surgeries or any of the other physical hurdles? What if I told you, what “hurts” the most is going through a lifetime worth of struggles, disappointments, obstacles, and being told no! The hardest thing is the tiresome battle of fighting a disease you cannot beat, but only try to manage.

Don’t get me wrong – the repetitive internal bleeding in my joints caused by hemophilia has left its mark. Today, I live with –

  • End-stage arthritis in my right knee resulting in knee replacement
  • End-stage arthritis in my left ankle resulting in fusion
  • End-stage arthritis in my right ankle (requires fusion)
  • Beginning stages of arthritis in toes, an elbow and potentially a shoulder

Physical manifestations of diseases are often easier to diagnose and treat. The important question, that should be asked, is how the damage is affecting the patient between the ears – how can we understand what it is doing to a patient’s mental, emotional health as they try to deal with an illness?

Over the years, I’ve had to give up many things in my life just because they’ve become too physically demanding. This is something that weighs heavy on my mind all the time. Combine these losses with overheard comments from people in public, as well as in the hospital setting, and it becomes difficult to handle. Remember, not all disabilities look like the designated handicap symbol.

Take the case of when I fell and hit my head against the wall. I felt something was wrong, and was concerned I had a head bleed – which is the worst-case scenario for a hemophiliac. I went to the emergency room, and because of my diagnosis, I was seen immediately. Then, I overheard staff talking, just behind the curtain. “I don’t know why he’s back here, he looks fine and there are people who have been here longer. That’s not fair; he shouldn’t have got through so fast.” The comments bothered me – a head bleed is life-threatening. Rather than getting angry, I used this opportunity to educate the staff about hemophilia and why my concern was urgent.

So, how can medical staff treat the whole patient? It’s simple – ask questions. Get to know your patient and what defines them as a person. If their diagnosis robs them of a key attribute, help them find an alternative. Don’t focus on what a patient can no longer do, but focus on how they can find their way back or find something new to conquer.

As a child, my life revolved around sports. At age 12, my parents were instructed to stop me from playing all active sports. The risks were deemed too high, despite being treated prophylactically with factor VIII to prevent further bleeding episodes. Children are not as equipped to handle heavy decisions, especially the ones thrust upon them. I was no different, and my world was crushed. Looking back, I have little or no doubt that I struggled with depression in the time following my removal from sports.

It has been 21 years since, and although I’ve grown to understand why the decision was made, it will forever be a regret of mine – that I didn’t get to play the sports I loved with my best friends.

I’ve also learned that diseases don’t define people – rather, it is what one does in spite of their diagnosis. It took me a long time, but I found ways to adapt. Now, I exercise to stay fit, play golf, and recently started playing sled hockey with the Rochester Mustangs. I also share my health journey with medical students, hemophilia patients and their families, with the hope that my experience can help those in the hemophilia community find better ways to cope and stay healthy.

For medical staff, my goal is to help providers look beyond test results and diagnoses. Learn who your patient is, what drives them, and help them maintain their whole being. Listen, offer alternatives, and know that asking your patient to give up something they love, even if it’s in their own best interest, may only take a minute for you, but will last a lifetime for them.

Minnesota’s Mediocrity

 

Minnesota – a great place to live. Anyone who calls it home knows it. If you don’t agree, well, I won’t discuss the weather with you or treat you to an awkward MN goodbye that takes 45 minutes. But, let’s just get this out there, our professional sports teams mostly suck. Call a spade a spade, our teams are collectively inept and are the worst in the country for any state that has all four major sports.

(Inserting an emphatic shoutout to women’s sports teams in this state – whether it is Gopher hockey, the Lynx, Regan Smith, or the Whitecaps, our female athletes kick ass)

People accuse me of being super negative (true fact) because I’m frustrated and fed up with rooting for teams that never go anywhere. My counter is always the same, we are so used to our teams being bad or choking that when one finally makes the playoffs, we are happy just to be there. Our favorite teams are so bad, fans are satisfied being part of the conversation with no expectations of actually winning. The Pohlads have swindled millions from Twins fans because they know Minnesotans will show up to a nice park regardless of the product, satisfied with just being relevant every ten years or so.

Negative? Absolutely. Tell me why we shouldn’t be as fans? Let’s take a look at our favorite teams:

  1. The Minnesota Timberwolves (1989-2019)
    1. Career record: 961-1451, .398 W-L%
    2. 9 playoff appearances (Thank you Kevin Garnett)
    3. Drafted Rubio & Flynn over Curry
    4. Gave Wiggins a max deal
    5. No further explanation needed
  2. The Minnesota Twins (1901-2019) (between two states)
    1. Career record: 8903-9603, .481 W-L%
    2. 19 playoff appearances. 2 World Series championships (YAY!)
    3. Since 2000, 6 playoff game wins. Last 4 appearances: 0-10
    4. 10-year division drought snapped in 2019
    5. PLEASE DON’T GET SWEPT BY THE GD YANKEES THIS YEAR
  3. The Minnesota Wild (2000-2019)
    1. Career record: (W-L-T-OTL) 689-556-55-142 (1575 points – not awful)
    2. Playoff appearances: 9, including 6 straight from 2012-2018 (also good)
    3. Bounced in the 1st round in last 3 appearances (son of a !)
    4. Overall, not a horrible 20 years but not much to show for it
  4. The Minnesota Vikings (1961-2019)
    1. Career record: 480-399-11 .539 W-L% (good enough for 6th best in NFL)
    2. Playoff record: 20-29
    3. Superbowl appearances: 0-4 (F!)
    4. Best known for choking in the biggest moments and breaking fans’ hearts
    5. Vikings gonna Vike
    6. Gary Anderson.

After the recent loss to the Bears, I took my frustrations to Twitter and was savaged by fellow fans.

 

Tell me, what about the above is there to be positive about? We have the longest championship drought of any state that has the above four professional sports. As fans, let’s demand more from our teams other than just making the dance. Let’s quit convincing ourselves the Vikings are anything other than a .500 team with Zimmer & Cousins at the helm. I am a huge Zimmer fan, but it just isn’t working. I’m not advocating for anyone to lose their job, because I really don’t know what will help at this point.

I am confident, however, that as long as the Vikings are unable to draft their own franchise QB, they will be nothing more than a .500 team that occasionally jumps up and makes a run, ultimately ending in another wide left heartbreaker. Vikings gonna Vike.