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 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 4 decades, have left me immobile in many of primary joints including 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, leaving patients spending 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 that 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 that 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 solely do no 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, 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 the everyone in the hemophilia community, "
Why isn't this issue addressed more in older patients?" Patients today, age 25 or under, don't have the joint deformities we older patients have because they've all been 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 him 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, building muscle around the joints will cause a lot less bleeding episodes, but no treatment options are given or offered, just a consult, and out the door and on to the next.
If you're living with hemophilia, and you're currently happy with your doctors and treatment plans, than I am more than thrilled that you've found your niche. But, if you're a patient questioning your own value and worth, and your doctors demeaning tone leaves you feeling more-or-less like a "
frequent flyer," than it's definitely time to change. So, as of today, I'm doing just that! I've been with this HTC since March 2009, and in these past 7 years seen a gradual decline of patient care and value. If you're like me, and trapped in the psychological mind game of treatment facilities, than perhaps you should 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 of the health care industry. Don't stay at an HTC just because you get what you need, that's not progress. Stay because you feel valued, respected and cared for.
