Tuesday, July 26, 2016

Chronic Pain Management in Hemophiliacs, An Unheard Story

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. 

Monday, July 25, 2016

National Hemophilia Foundation's 68th Annual Meeting (NHF 2016)

The entrance the annual NHF conference at Gaylord Palms.
The NHF annual conference is designed to connect both patient and caregivers to the industry leaders among the pharmaceutical companies and the physicians who treat hemophilia. This year's annual conference was held at the 'Gaylord Palms Hotel & Resort' in Orlando, Florida, and kicked off a three day event on Thursday July 21st-23rd, 2016. For the first time, the NHF conference lead into the World Federation of Hemophilia (WFH 2016) conference, which is a global initiative to see seek "Treatment for All." WFH unites global hemophilia chapters, bringing together scientists, physicians, patients and caregivers from across the globe with a 4 day conference.

Joseph & Alexandra Burke with Jeanne White-Ginder, Ryan White's mother.
This year, was very emotional and there was a sense of spiritual connectivity among fellow hemophiliac survivors. A fresh sense of rebirth is awakening among the bleeding disorder community, as new treatments not only for bleeding disorders are on the horizon, but breakthroughs in HIV and Hepatitis C therapies have given the community a 'Burst of Life.' More and more hemophiliacs who were affected by the pharmaceutical tragedies of the 1980's are being cured of HCV, and thus the mortality rates among the bleeding disorder community among that generation of bleeders have significantly been reduced. I had the honor to hear Ryan White's beloved mother, Jeanne White-Ginder speak at the conference on the realities behind the scenes during Ryan's media bombardment of the late 80's and early 90's. She recalled fond memories of Grammy winning musician Elton John staying by Jeanne's side during Ryan's final hours, to a heartfelt phone call from the 'King of Pop,' Michael Jackson. What a strong and humble woman Jeanne is, a true beacon of hope and light among the bleeding disorder community. For me personally, this journey has in many ways come full circle, as I now realize my role and plan of action in my own steps toward hemophilia, HIV and HCV advocacy.

Joseph & Alexandra Burke with Clifford & Louise Ray.
I also had the distinct honor of meeting another ambassador of the hemophilia community, Louise Ray. Mother of Ricky, Bobby and Randy Ray, many can remember the horrific news media coverage of their home being burned in Arcadia, FL because of the AIDS scare in the 1980's. They've endured so much, and today only Randy Ray survives, carrying the torch for his two brothers. The bond between the Rays and Whites is strong, and their story echoes the senseless tragedies and dark ages of the pharmaceutical industry among the bleeding disorder communities. It was very emotional for me as a patient and now advocate to hear their stories of enduring, which ignites my own passion and fire to educate the world that, "We've Come So Far, But Not Far Enough."

Alexandra looks at artwork in the Blood Works Gallery
from her husband Joseph Burke.
A special blessing was having several of my paintings featured for the second year in a row at the gallery of "Blood Works."The gallery is composed from submissions only from the bleeding disorders community, and highlights the artistic creativity that thrives among those living with hemophilia or Von-Willebrands disease. I even had three songs on the "Blood Vibrations: 5 (Blood Work Mixtape)."I want to give a huge shout out to Justin Levesque from Maine, who organized and coordinated the Blood Work gallery exhibit during NHF's 68th Annual meeting. Justin is from FOLX, which "aims to support positive physical & mental health outcomes for people in the bleeding disorders community from diverse backgrounds."Again, great job Justin!

Joseph & Alexandra's Artwork Piece during "Couples Art Therapy."
One of the sessions on the final day of NHF was "Couples Art Therapy." The session allowed couples to dive inside the dark portions of living with hemophilia, yet focusing on the hope of a brighter future. The class was open for interpretation, and allowed couples to create works of art that depicted their dreams and ambitions together. My wife Alexandra and I had so much fun putting together this piece that overlapped our hands, while putting our faith in God at the center of our lives. We got several really heartfelt comments from participants and officiants of the session on our idea. It is our hope for me to be cured of HIV, and remain thriving for God and each other. A testament to enduring the hardships of life, and achieving favor in the eyes of your spouse. This session was very unique, and in-depth, and allowed couples to artistically reveal what their hearts and minds are truly saying about living with a bleeding disorder, or caring for someone with the disease.

For more pictures from NHF 2016, please see the official album below from my I Strive 2 Thrive Facebook Page.