Holding Out for a Hero

In less than two weeks, I will be traveling to Boston to see a doctor who specializes in Pancreatitis in Cystic Fibrosis.

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I have had Chronic Pancreatitis for over seven years now. The genetic defect that causes CF creates thick, sticky mucus in the organs. When this mucus clogs the Pancreas, it blocks the release of digestive enzymes and insulin. After four decades of constant inflammation, mine is useless, and I have to take supplemental digestive enzymes – Pancreatic Insufficiency, and inject insulin any time I eat – Diabetes. I have nothing left to lose.

I need a hero.

I spend hours a day with active pain and nausea. My symptoms occur around the clock, worsen when I eat, and become severe if I eat protein or fat. Even with medication to treat pain, nausea and vomiting, I spend a lot of time incapacitated and on the couch.

The medications also have side effects: drowsiness, which affects my ability to drive; I have difficulty focussing or concentration; dystonia (involuntary muscle contractions), etc.

Then

Between 2007 and 2008, I saw at least a half-dozen different GI doctors and specialists, each of whom at some point decided that there is nothing else they can do, that I no longer need to see them, because that anyone can do is manage the symptoms.

Seven years ago, it wasn’t even common to reach the diagnosis, because theoretically, the level of damage in an adult CF patient’s Pancreas was so great that there was nothing left to inflame or cause symptoms.

Now

I am at the end of the proverbial rope. The condition has worsened to the point where I will do almost anything to get some relief.

One night two weeks ago, I spent the better of six hours vomiting uncontrollably (including puking up blood) and diarrhea, spiked a sudden fever of 102.0 degrees, and had abdominal pain so severe the I screamed. I had to scream into a folded up towel. The combination of all of the symptoms was beyond exhausting. I slept for several days afterword, partly due to exhaustion from the experience, and party because I was also fighting off MRSA pneumonia.

Sunday night’s episode wasn’t as severe, only second in terms of how awful it was. The vomiting, vomiting of blood, followed by diarrhea and pain again, just took so much out of me. Three days later, I am still sore all over from the muscle contraction that happens with violent vomiting. I have been able to control the underlying pain and nausea, and keep an eye on all of my vital signs so that I can reach out for help when/if I feel that I need intervention.

Gosh, I just want to make it until my appointment.

Seven Years in Hell

My Pancreatitis has so severely disrupted our lives. It’s difficult enough managing CF lung disease in CF; this makes life unbearable. In addition, the risk factors of secondary life-threatening issues climbs. I keep that in mind not to wallow in self-pity or play the “what if” game, but to recognize that despite medication to alleviate the symptoms, there’s an entire organ in my body that is so damaged that it’s mostly inactive, possibly dead, tissue. I only say this because I will seriously consider any option put before me. In 2007, the doctors said
“there’s nothing else we can do.”

Thankfully, the medical community now recognizes CF as a major risk factor for Pancreatitis  – in fact, there are a number of documented cases of adults being diagnosed with CF, because they had Pancreatitis. That means that the medical community has much more evidence and insight than they did seven years ago, have more experience in investigational treatments, and have helped a number of CF patients gain back some of their lives.

That gives me hope.

I had never stopped searching for relief, but I have now have someone to give my hope to – a specialist in Boston, who has devoted his entire medical career to research and treatment for CF-related Pancreatitis. He spends four days a week doing research, and one day a week seeing patients. I’m incredibly lucky to have made an appointment with him, that my insurance will cover it, that my husband can take time off from work to go up there, and that I am otherwise relatively stable enough to make the trip.

So if you pray, or believe in putting positive vibes out into the world, please remember me and this journey.

I understand the risk of putting all of my eggs in this one basket, but it’s the only basket left.

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