Why Aging Hemophiliacs Need Better Pain Management Options
For the past couple of years, I’ve been weighing my options in terms of seeking medical treatment at my current Hemophilia Treatment Center (HTC). Deep down, I’ve felt more like I’ve been a statistic, rather than a genuinely cared for patient who lives with hemophilia. The treatment center has gradually slipped into an unforeseeable decline of patient care. Let me explain.
A very serious issue among the 40-something-year-old patient populous is the management of chronic pain, stemming directly from permanent joint damage derived from hemophilia related joint and muscle bleeding. Multiple bleeds over time, in my case almost four decades, have left me immobile in many of my primary joints, including the left shoulder, right knee, right elbow and both ankles. The pain from this type of damage is at times, very intense and severe. Many times, it can leave patients to spend long nights lying awake in their recliners hoping and praying for some sign of relief to the inflamed joint so they can simply sleep.
Today, I was pretty much ostracized for my condition by my chronic pain management doctor, who up until today has been warmly welcoming to my condition and case. What was to be a routine follow-up appointment, ended in me questioning whether or not I was a lowlife addict who was only there to receive pain medication. His exact words, and I quote, “There is no need for you to be on pain medication, you appear today to be doing well.” After explaining to the doctor I’ve been having trouble sleeping as a direct result of pain from my joints and right elbow, he was forcibly quick to chime in, “Yeah, but you don’t need a medication to sleep, there is nothing wrong with you.” Upon attempting a second time to reinforce my disease of living with hemophilia, he looked and said, “I’m weaning you off all medications, and will put PRN on your appointment slip,” which means no follow up. I left the clinic feeling worthless, defeated and like I was only there like an addict seeking a fix.
Let me be clear, I’ve seen the horrific effects of pain medication addiction, even in my own family. I know the risks of being an addict versus taking a medication on an “as needed” basis for relief. I am in no way addicted to pain medication and do not solely rely on them for daily function. Hemophilia and chronic joint pain go hand-in-hand, and no one in the industry today seems to want to blow the lid off this issue. The chronic pain management doctor gave multiple attempts to try to alleviate my pain by prescribing Gabapentin and Lyrica, both neuro-blockers that treat muscle and nerve pain. But, my pain isn’t directly muscle or nerve-related, rather direct bone to bone grinding and internal joint hemorrhaging. Both drugs failed miserably at treating my pain, yet I gave them both valiant efforts.
My question to everyone in the hemophilia community is, “Why isn’t this issue addressed more in older patients?” Many patients today, age 25 or under, don’t have the joint deformities we older patients have because they are more likely to be placed on prophylactic treatment regimens to prevent bleeding episodes. Thankfully, now, I am on a preventative treatment regimen as well, but chronic pain is the number one issue that I face each day. I despise going to the pharmacist, handing the script and the look he/she gives me when they read the drug’s name.
And my complaint isn’t with just the pain doctor, but the entire HTC as a whole. From their poorly communicated social worker, who has now since been replaced, to the physical therapist that simply walks in, looks at my joints, and states, “that’s a really messed up joint right there, what are you doing for it?” Wait… shouldn’t you, the physical therapist, be offering me insightful knowledge on treatment options and gasp… possible physical therapy sessions? Rehabilitating a joint and building muscle around the joints will cause a lot less bleeding episodes. But no treatment options are given or offered, just a consult, and it’s often “out the door and onto the next.”
If you’re living with hemophilia, and you’re currently happy with your doctors and treatment plans, then I am more than thrilled you’ve found your niche. But if you’re a patient questioning your own value and worth, and your doctor’s demeaning tone leaves you feeling more-or-less like a “frequent flyer,” then it’s definitely time to change. So, as of today, I’m doing just that! If you’re like me, and trapped in the psychological mind game of treatment facilities, then perhaps it could be beneficial to take a stand and change things up. Effective today, I will no longer seek medical treatment for hemophilia from this facility. I am moving my care to to a different city, a new HTC and a doctor whose perspective on hemophilia is more compassionate than the latterly explained.
Hemophilia and chronic pain management will forever be tied together. I stand silent no more, and plan to expose the “dark side” patients often experience in the health care industry. My advice to patients is not to stay at an HTC just because you get what you need. In my opinion, that’s not progress. Stay because you feel valued, respected and cared for.
Follow this journey on I Strive to Thrive
Joseph Burke is a modern day miracle, public speaker, advocate, care counselor at his local church, as well as an acclaimed broadcaster and musician. He was diagnosed with HIV at age 3, and is among a handful of the oldest survivors in the nation living with the disease for over 33 years. Also co-infected with hepatitis C, Joseph lived over 30 years with the liver disease after being cured with the new drug Sovaldi in 2014. Today, his largest hurdle is chronic pain from joint damage with permanent injuries to his right knee, both elbows and both ankles. Everyday is an uphill battle, but the key to his ongoing perseverance is through his personal faith and tremendous love and support from his wife Alexandra – who happens to be a registered nurse. Joseph may not be an athlete, but his strength is in his encouraging words, spirit and humility. Today, he carries the torch for those who’ve passed on from the hemophiliac AIDS crisis of the 1980’s, and educates schools, local chapters and groups on HIV, hepatitis C and hemophilia awareness.
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