Stay in Touch
Get sneak previews of special offers & upcoming events delivered to your inbox.
04-24-2017 02:57 AM - edited 04-24-2017 04:05 AM
To say my life was nothing but darkness would be going too far and denying my Christian faith, but there were times when I felt I could not go on. The pain from Acute Intermittent Porphyria (AIP) was wracking my body so completely I’d go without sleep for days at a time. I knew the AIP was affecting me emotionally as well: there days when I’d call friends and prayer partners in desperation because I felt like ending it all.
Like too many of you, my AIP went undiagnosed for years. I remember the first time I was struck by the horrible abdominal pain, just after I’d entered puberty in the 1960’s. The doctors were convinced it was menstrual pain and put me on high-dose birth control pills to stop my periods. The pain only became worse and more frequent.
Shortly after this, I remember my urine turning the color of Merlot wine. The doctors tested this as well, found no sign of blood in the urine, and took this no further. The attacks continued along with a seemingly endless series of examinations and doctors, but fortunately I never had exploratory surgery. It was only about 12 years ago that I was finally diagnosed with AIP after I was thrown into seizures while being treated with barbiturates. I remember the diagnosing doctor coming back in tears – he was the first to realize how many years I’d suffered without hope or treatment...
So why was I suffering now, fully 12 years after I’d been diagnosed? I’d been riding in and out of AIP attacks for months, eating jelly beans by the bag, trying to pump up my carbohydrates, seeing doctors who brought no relief. During numerous prior attacks, I’d been hospitalized and given the usual glucose IV along with Demerol for the pain. The relief would last for awhile, but all too soon I’d find myself back to skipping in and out of another attack. With doctors offering nothing that seemed to work, I’d given up hope of anything more effective.
Here I was, months in and out of attacks that seemingly wouldn’t stop. Some days were better than others, but the trend was always downward and by then I was spending much of my life in bed. I’d started having seizures a few weeks prior, and my new doctor put me on anti-seizure medication after verifying its safety on the American Porphyria Foundation’s web-site. This doctor was someone special to me: he took an active interest me as a whole patient – including my Porphyria – and was instrumental in what happened next.
It had been a bad weekend. I’d suddenly started having great difficulty urinating. Just as suddenly, a couple days later it seemed as if I’d lost complete control of my bladder and other muscles. The pain was worsening everywhere – my whole body hurt and sleep was impossible regardless of the medications. I’d been talking with a close friend in the Midwest throughout this period, and he saw what I couldn’t: I had reached a crisis. After he’d spent the morning checking new medical links, he called back with information from two new articles he’d found.
One article convinced him that I was deeply in an AIP attack, another recommended Panhematin®treatment as the first response to someone in a confirmed and severe AIP attack. He asked if he could alert my doctor to my new symptoms, and after receiving my permission, he notified my doctor and sent along the new articles he’d found, later faxing over the “Panhematin® Treatment” page from the American Porphyria Foundation website.
My doctor’s response was immediate. He found a hematologist in the area who’d administered Panhematin® previously to a number of Porphyria patients. After the hematologist’ examination, arrangements were made immediately and I somehow dragged myself into the hospital to begin the course of treatment the next day.
The procedure itself is similar to IV glucose treatment – certainly no more uncomfortable – and a small automatic pump is often used to feed the Panhematin® into the IV line.
But what a difference in results! Compared to my previous glucose treatments, this was night and day.
My first treatment was given around 11:00 PM after all the test results had come back. Sometime after the treatment I fell asleep for the first time in days, continuing to sleep between doctor visits the next morning. When I woke completely around noon it was time for my second treatment. It was then, wide awake for the first time, that I had my first revelation: I could think again!
Going into this attack had been a slow process. It was like driving into mist that slowly changed into dense fog. I eventually felt myself surrounded in a gray depression where I struggled with even simple tasks. Even my speech was affected, becoming slurred, halting, and filled with stutters.
Now suddenly I woke up in the light! The fog had vanished, and along with it the hopelessness that stole every minute. When my friend called, he listened in near silence as I chatted easily about my night and the joy of waking up refreshed. When he finally spoke, I knew that the change wasn’t just a reflection of my hopes.
“Cheryl,” he said. “Just listen to yourself – you’re not stuttering anymore! I hear you laughing, you’ve got the expression back in your voice, I can even hear you wise-cracking with the staff! This is incredible – Cheryl, this is the old you, finally back again. Thank God!”
It was then I knew that many prayers for healing had been answered. The pain and bloating of AIP was still there, but my mind was back! Whatever else happened, this mental clarity and joy was a blessing almost beyond my imagination. Little did I know how much more healing would come my way...
I chatted on the phone through my treatment, and by the time I fell asleep I felt a definite lessening of the pain. By morning, most of the pain in my abdomen had disappeared and the bloating was down noticeably. Even better: the awful pain throughout my body had started to ease. Now instead of pain everywhere, I could feel discrete areas of pain where I had been injured the prior autumn.
From that point forward, each day brought further changes, though none as dramatic as those first two days. By the third treatment, the final bloating of AIP disappeared as well as the remainder of the pain with the exception of my injuries. Over the remaining two days of my treatment, I was getting pretty bored – my mind was racing with all the things I could finally do again – but the doctors assured me they were still seeing improvements in my daily test results. So I restrained myself until it was finally time to go home.
Since those wonderful days in June I’ve had a surprise. When I called the American Porphyria Foundation to thank them for all they’ve done for me, they told me something totally unexpected. Apparently many people with Porphyria are reluctant to have Panhematin® treatment, overestimating the risks while underestimating the benefits. It is for you, those people who suffer without hope as I did, that I am writing this article. If you are suffering, I urge you to have your doctor call the American Porphyria foundation to find out more about Porphyria and Panhematin®.
04-24-2017 03:06 AM
I'm not sure I understand; are you saying you've been diagnosed and are coping with this condition? That link sounds like an advertisement or solicitation.
04-24-2017 03:08 AM
@gracie2014 Wow! Gracie, I just read the entire article and wanted to thank you for posting it and to say I am sorry you had to go through so much illness until you found the right doctor and treatment.
Congratulations in a big way for "hanging in there."
04-24-2017 03:10 AM - edited 04-24-2017 03:15 AM
@Kachina624 This is not an advertisement or splicitation. This is a piece written by me a few years ago. I have acute intermittent porphyria and this is my story. Actually meant to post in the sixties group..not thinking clearly as I am currently in the middle of an attack.
04-24-2017 03:13 AM - edited 04-24-2017 03:14 AM
@gracie2014 Well live and learn. I never before heard of this condition and am so sorry you're suffering with it. If that's your real name, the mods won't like you using it. Can you change it to something fictitious real quick?
04-24-2017 03:19 AM
@gracie2014 See the 3 little dots in the upper right corner of your post? Click on that, then click edit. Your post will come up in a box. Just change the name then hit post.
04-24-2017 03:25 AM
@Kachina624 Thanks so much! Hope it it right now. This was meant to be shared with the ladies in the sixties group, but the disease has me tired and in pain.
04-24-2017 03:40 AM - edited 04-24-2017 04:08 AM
Not sure, I have done this correctly. Perhaps one of the mods can help? My real name comes up once you click on the link. It just so happens to be National Porphyria Awareness week..there are three of us in my state who are in the middle of a flare..one is about to be airlifted to a major hospital if they cant stop the attack.
I am waiting to talk with my doctors later today...typically I do inpatient for 5 days of the infusion..but have been hospitalized for as long as 12 days.
Ok, figured it out!
Get sneak previews of special offers & upcoming events delivered to your inbox.
Thanks, you're all signed up!