I was asked to put my history on this blog.  As best as I can recollect:

When I was real young (less than 10?), I was given penicillin; this almost killed me.  It wasn’t until years later (55 years old), that a neurologist told me that he typically sees porphyria sufferers because of nerve damage from taking antibiotics. That is what I now consider to be my first porphyria event.

However, I had many unexplained stomach aches when I was young…so many that I was accused of faking them.  That was not a lot of fun; I did get in a lot of trouble for it.  The worst part was having to hide the pain, even if it was bad enough to cause me to pass out.  Did they start before or after the penicillin event?  Only God has the answer to that one.

And, it seemed that I was always getting infections and had bad reactions to sun burns.   Just a weak kid.   I also eye problems (operation when very young to keep the eye from turning inward) and very crooked teeth.   Fortunately, I was very much into sports (Judo, swimming, cross country running, bikes, ice skating, etc).  I believe that helped me immensely – if nothing else all the sweating and hydration helped flush the poisons out.   I just wish that I had learned to eat right.  Then again, meat & potatoes kept me away from broccoli and other dangerous things.  I also have never liked fatty foods.

Anyway, I had many unexplained stomach aches through the years, until an emergency room doctor declared that I had irritable bowel syndrome and gave me donnatal.  Wow.  That stuff is great.  I guess I was about 33 or 34 at the time.  I’ve had continual prescriptions for it ever since; only now that I am seeing a hematologist (who tested me positive for porphyria), I now have prescriptions for donnatal for the right reason.

Next instance was emergency gall bladder surgery (40 years old).  I thought the pain was from irritable bowel; but, the folks at the hospital (North Side) said it was gall bladder, gave me some pain killers and sent me home, with instructions to contact my doctor on Monday.  I was in so much pain (even with the pain killers), that I went to another hospital (Crawford Long) that took me right it.   Well, there was gangrene throughout my gut & I was on the table for almost 6 hours.  That hospital stay was about a week.  There is no doubt that the death of my gall bladder was a result of porphyria.

Normal stuff continued – infections, irritable bowel, repeat as necessary.

Then, around 49 years old, I really messed up my shoulder.  The rotator cuff had been in need of tweaking for awhile, I guess.   I did a lot of yoga and weight lifting; so, I was managing it, until I did something stupid on roller blades.  I shouldn’t have been skating that day, anyway, as my shoulder was really hurting after playing tennis the night before.   The surgery was significant (2 disconnected muscles and a ruptured bicept); however, the recovery was a disaster.  This is when my porphyria really kicked in; however, I still had never heard the term.   I was jaundiced and very sick for several months.  The doctors, of course, had no clue what what going on.  The specialists that I was sent to would just make me sicker…little things like liver biopsies that would make me much sicker. And, they could be completely uncaring, too.   I took the afternoon off of work (yep, still holding down a job…though they threatened to put me on leave of absence) and went all the way across town, waited for an hour or so in the waiting room.  The doctor walks in & tells me the test is negative, he has no more tests to run, and gets up to leave!  Can you believe that?  We had words.    Eventually, my health stabilized.   Though, at the time, I still had no clue what was wrong.

Somewhere along the line, I heard from one of my children that they had porphyria.  And, after a bit of research, I came to realization that it was obvious what I am dealing with.

It is not a surprise that this problem cuts into my energy for friends, projects, hobbies, career development.  Around this time, it stopped my volunteer work with the church on several fronts, whether charitable (helping with homeless groups) or production (I ran a large monitor board for the bands that play during worship).  The last time I was on the production schedule, I was able to make it to practice/set up on Wednesday night; but, Saturday I was in the hospital, on morphine, calling around to find someone to take my place the next morning.  That was the last time that worked production; I could not do that to them or to myself again.   I really miss helping.  I also miss many of the occasions with family and friends that I had to miss.  And, then there are career opportunities passed on.  I should not complain; many people have it much worse than I.

My next joyful interaction with the medical community was a visit to one of the foremost liver specialists in the area.   When my family doctor referred me there, because of the recent problems, it seemed like a great idea.  I mean, after all, who would be better at helping with a problem that so greatly involved the liver?  What a disaster.  He said there was no way that I had porphyria and convinced me to let him run an ERCP.   They did find a gall stone; but, I ended up with pancreatitis.  I won’t dwell on waiting for hours in the emergency room full of people with the sniffles or the weekend spent in the hospital.

It was at this point that I decided that I was done with doctors, especially specialists; sinus infections & such can be handled by PA’s.  One of the benefits of PA’s is that they tend to  talk to you much longer than doctors will.  And, I’ve found that they remember more about you.  This method worked for a few years.  I had already been diagnosed with irritable bowel; so, that was what I had.  We dealt with porphyria by doing research on the web and keeping food logs.

Some of my porphyria attacks did not completely go away with pain killers and eating; and, sometimes it felt like there was a fever in my gut.   Well, after one real bad attack that would not go away, I went to the emergency room…you know that I was really desperate to do that.  They ran an MRI and found that I had diverticulitis.  Joy.

I am convinced that the problems in my colon are a result of the sever spasms during porphyria attacks. The damage is at the start of the colon, right by the gall bladder & liver…go figure. It is not unusual for diverticulitis to flare up after bouts of porphyria attacks.

Eventually, I let it slip to a PA that I had porphyria.  Well, she stayed on me to go see a specific Hematologist in the area.  I thank God that I listened to her.  He was very open to what I had to say and ordered a 24 hour urine test.  This came back positive for 2 different heptacarboxyporphyrins & coproporphyrins; uroporphyrins were high & almost at the level to be flagged.   And, I wasn’t even having an attack.

On down the road, I was having carpal tunnel problems; so, my hematologist referred me to a neurologist.  The neurologist was very familiar with porphyria; he told me that every porphyria patient he sees is a result of nerve damage from reactions to antibiotics.  When it was determined that surgery was required, there was extensive communications between the hematologist, neurologist, neurosurgeon, and anesthesiologist, to prevent an attack during / after the surgery.  There was so much planning that, in the pre-op area, other doctors & nurses (not associated with my surgery) were coming over & asking me about porphyria.  That was very comforting.  Well, in spite of all the planning, I was still very sick for weeks.  I had forgotten that there is no such thing as a “known good” or “known bad” drug.

That brings us up to the present.   By rigorously managing my diet, using (over the counter) glucose frequently & avoiding triggers, we have dramatically reduced the number of attacks that require pain killers.   I am still prone to infections, always feel “unwell”, and have energy problems.  But, I am able to carry on.  I am blessed.  Thank God.

4 Responses to History

  1. Nicole says:

    Wow….what an experience you went through 🙁 However, Im glad that you are helping others now with this, and encouraging all of us. God bless your strong heart.

    • Greg says:

      Thank you, for your kind words, Nicole. Actually, I think that I have had it relatively easy, when I hear about the trials and tribulations of other porphyria sufferers.

  2. Laura says:

    I just discovered this blog. Thank you! I had a very similar background to you…penicillin reaction around the age of 12, stomach issues from my late teens onward. Since the stomach issues were so random, the best they could say was IB. Then, I was diagnosed about 10 years ago with Crohn’s disease. A few years after that, I landed in the hospital with what I thought was a heart attack, but was diagnosed with GERD with esophageal spasms. Around the same time, I was having horribly itchy arms that would blister and burn. I was sent to a dermatologist who sent me for genetic testing and I was diagnosed with VP. Although my doctors were/are familiar with porphyria, I don’t think they or I was really making the connection with the VP and what the doctor feels is GERD, but your blog makes me think it is really a porphyria attack. I will agree with you on the Donnatal. My gastro prescribed it to help with the spasms, and it is often the only thing that stops an attack.

  3. Shery says:

    Again Thanks ever so much for sharing… I too had many many things happen to me from the time I was born until now. Like you all a big maze of ‘stuff’ without answers until a determined dr (now retired bless his soul) was determined to figure out what the world was wrong with me. He did and it was hereditary co-porphyria with cutaneous – meaning HCP with sun and light issues. Between my dr and me doing research way back in 1994-1999 we figured out a number of things that helped me such as triggers, warning signs, foods, chemical issues and the list has only grown larger. I can so relate to the gallbladder story – I just had mine out and was sure it was ‘only’ an attack – boy was I wrong and I was in the hosp. for 14 days but for me the drs listened to me and I didn’t come away with an attack just a few more drug reactions which were quickly taken care of. Again… thanks so much – sharing what works with those who are still struggling helps them thru some of the things we faced without hope or help. Blessings

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