Scars - The Rest of the Story

The previous post told you about the scars and the surgeries that caused them.  I truly don't remember the childhood surgeries much at all.  There were two I didn't mention since you can't 'see' them;  a double hernia as an infant and eustachian tube surgery in grade school. The last one hurt big time, that I remember, cause they're supposed to fall out, but didn't.

What I didn't talk about in the last post was how I got through the last two surgeries and the healing afterwards.

I had only been married a little over a year when the emergency surgery took place.  I can't imagine the toll it took on Deb, and I can't imagine getting through all the medical issues I've had without her by my side.  She's kept me on an even keel , and led me in prayer.  She's prayed with me, and for me.  Some of our sweetest worship experiences have been in hospital rooms.  In 2001 she brought up a small keyboard and we sang.  A friend brought up a guitar and we sang with him as well. One of the nurses joined in on occasion too.  We had the chance to pray with other people on the floor, and with doctors at times.  Deb has kept better records than the hospital and knew before the surgeon did that I was having an issue.  No offense to my nurse friends out there, but in some cases nurses miss things - especially during shift changes, and the log is inaccurate.  Deb is meticulous - or can be when she needs to be.  She knew, by the data, that the drain had punctured my incision, and the doctors found it after a procedure - she was right.  

When my liver started to fail, Deb was the one that knew we needed a vigilant prayer.  Our mantra became "the right liver, at the right time."  It remained our prayer for over a year.

Deb is always right there to hold me, pray for me , and love me.  She helps me get through one day at a time.

I also have a lot of friends, and their prayers and well wishes mean the world.  

I might say lastly, but should be first, that faith has gotten me a long way.  I believe God is with us in our times of trouble.

So,  to sum this up,

Illness has brought me closer to God than any other experience,

Deb is amazing and is always by my side to love me through it all,

I'm fortunate to have a great community of friends

Love you all,

Brian

Scars answered

A few of you saw the picture of my belly that Deb posted on FB, and asked about the stories behind them.  The photo is below as well.  This may be another case of TMI, so stop now if you don't want the history of my belly...

Well, here it goes..

My scars, at least the visible ones, are easily described.  The noticeable lone horizontal from near my navel running to a little past the middle of the left side is from the mid 1960’s when I had my spleen removed.  In this pic it just looks like a dark line.  As it turns out this was an unneeded surgery.  The intent was to help mitigate my chronic anemia.  The belief was that the spleen was unnecessarily filtering out blood cells.  This is true for some types of anemia, but not mine.  After the surgery I was sent to Children’s Hospital in Boston, where I was pronounced to have a Glouse-6-phosphate-dehydrogenase (G6PD) deficiency. G6PD deficiency is fairly common and is usually only noticed if the wrong medication is taken.  My form is a rare type and my red blood cells break down all the time roughly twice as fast as normal red blood cells.

The short, fat, vertical scar too is from the 1960’s, I’ll guess at 1968.  Gallstones developed and my gallbladder had to come out.  There was some ‘new’ technique for closing the incision with a sort of glue, but it wore off kind of quick and left a wide scar.

In the 90’s I had a number of endoscopic procedures to clear my bile duct of obstructions.  There were large amounts of bili-stones (they can form when your red blood cells break down) that made sludge which would block up the duct and cause a good amount of pain.  The ERCPs (acronym for the procedure) cleared things pretty well, but needed to be repeated.  I think I had over a dozen.  The last one was botched in Aug of 2001.  The doc was only supposed to pull out the sludge, but he decided to cut the opening to the bile duct at the intestine a little further.  (it had be cut to be permanently open to allow the sludge to pass through it – normally the valve there opens when the gall bladder constricts allowing the bile to enter the duct.)  When he cut, he cut through the intestine and also hit an artery.  I went through angio procedure to control the bleeding, and was sent home a day and a half later.  There were still signs of internal bleeding, but no one was convinced there was a problem till one night when I vomited a toilet bowl full of blood.  I was rushed to the St. Mary’s ER.   My vital signs were okay initially, but the doc put a tube down my stomach and quickly realized I was bleeding pretty good.  Things got pretty chaotic.  I remember my Pastor giving me communion before she was kicked out of the room.  I was sedated, and I’m told I was draining the place dry of blood.  It was driven in by police and flown in by State Police.  After they got me stable, I was flown out.  Deb was told I was going to Washington Hospital Center, but when she got there she found I was rerouted in-flight to Georgetown.  I woke in ICU and found that I had 4 hours of surgery and 4 hours of angio.  The surgery repaired the duodenum, and the angio place a couple titanium coils in blood vessels to stop the rest of the bleeding.  The longest vertical scar is my reminder of that time of life, it starts just below my breast bone and goes a long way down.  It took my breath away the first time I gained the courage to look beneath my gown to see the railroad track of staples holding me together.  The healing took a long time and it was the first time that my liver issues started to really surface.  There was debate about my blood tests results and the fact that I’m always anemic overshadowed the liver function tests.  Anyway, it took a long time to heal from that, and included a 40 day episode of IV nutrition.  I was in and out of the hospital for quite a while – I became almost more comfortable there than at home.  The doc finally said that I couldn’t be in there and that people staying that long usually leave horizontally.  So, I went home with my 108 pound body!!  I did truly look like a holocaust victim.  So picture me now – pretty thin, and take another 22 pounds off.  I still can remember the staff calling me miracle man.  I still have the T-shirt with many signatures from nurses and attending physicians tucked away at home.  There’s a bit of a burden to being called that, especially by a seasoned trauma surgeon.  I never asked for the details of why they called me that, but was told “you have a strong heart.”  I’ve since let go of the burden by realizing the Bible talks a lot about the miracles of Jesus, but never really about what those receiving the miracles did with their lives.  Perhaps it was enough to be a source of hope by being the miracle?

The last scar is the curving mostly horizontal lines from the left and right meet up with the other vertical line in the center of my body.  This is the remnant of my liver transplant in 2005.  Some try to say it’s a Mercedes Benz symbol, but I don’t get that.  One transplant recipient told someone it was due to a shark attack – I like that better.

I'm afraid I may need to add another scar to the mix sometime soon, not sure where it will fit!

If you have more questions, let me know.

Peace,

Brian

DC and me

 

Deb and I are up in DC today for reasons I'll explain later.  This afternoon we had some time to wonder around the Foggy Bottom area of George Washington University.  As we came out of the hotel on Washington Circle I noticed a cab.  It was unremarkable in most respects, except the quintessential name - "Yellow Cab."  If you are imagining a big and roundish yellow taxi, you would be so wrong.  It's Red with a Silver stripe on the side.  I didn't have my camera out in time to snap a photo, so as we walked I kept a look out for another opportunity.

Finally a yellow "Yellow Cab"

I didn't have to wait long to spot another red with silver striped vehicle.  Only it was not a 'Yellow Cab.'  I'm not sure which company I spotted first, but I quickly realized that there are MANY companies with red and silver taxis.  What ever happened to 'branding?'  Where is the Checkered Cab?  There were two companies that made sense.  Sky had a blue car.  Red Top in fact did have a red top and White Top was true to its moniker. So, all of these shots are different companies; Rapid, AA Fareshare, ICON, Merritt, Federal, VIP, Empire, Dial, Star,  and finally I did find a Yellow Cab in red/sliver.  I also got an actual yellow Yellow (Hybrid) Cab.

If you've hung out this far, I'll share a few more findings before getting to  'the rest of the story.'



I'm not much of a city boy, but I do like architecture and seeing different 'lines' that are all around.


 I didn't take many photos of people today, but people watching is kind of fun too.

City Style - suit, backpack, bike

 I guess I've put this off enough, and asked for you to follow along.  Now's the time to bail if you don't want Too Much Information (TMI.)




 Okay then, here we go....


Many know that I've been dealing with Colitis over the last 5 or so years.  My colon has been inflamed for years, and I got really bad about a year ago.  This means frequent trips to the John.  In the last year though I had been doing well in terms of symptoms.  Only one trip to the bathroom a day and the output being closer to normal than not (hey I warned you about TMI.)

Today I had my yearly (or so) colonoscopy and expected to hear about improvement.  Well, I guess you don't always get what you want.  The positive part was there was some areas of reduced inflammation... but...  there were many pseudopolyps and maybe some polyps. Pseudopolyps are from the repeated inflammation and healing and are raised from the surface.  Polyps are little growths that occur and can eventually lead to cancer.  The doc removed these resulting in some bleeding that needed little surgical clips to be placed on the sites in two places.  They apparently fall off once the area is healed.  So, I'm told I may have a little bleeding over the next couple days - not great for someone who is already anemic.  But the best (kidding) is this; there is a 'mass' in a fold of the colon.  This was biopsied - as well as a number of other areas and will be sent for evaluation.  It could hopefully be just an area of excessive inflammation, or it could be something else...  not ready to say it out loud (or type it in black and white.)  What does all this mean?

Doctors have been telling me for years that it's not a question of if but rather when my colon will need to come out.  If I do this while 'healthy' there is a chance that a surgery making a 'colon' out of the small intestine could work.  This allows you to control your own bowels, though 4 to 7 times a day.  There are risks that you never are able to control it, or that a full colostomy w/ the nice collection device could be needed.  Ie, a nice bag of shit is strapped to your abdomen.

 The upside to all of this?  My risk of cancer of the colon (if I don't have it already) is very high - this is due to both my colitis and my transplant meds.  If I remove the colon this risk obviously goes away.  There is also the possibility that with the removal and reduction of the inflammation in my body I may not need Procrit injections - that's the drug I take to keep my blood counts up.

So, I kind of feel like the squirrel above.  Upside down and hanging on.

Guess I need to dig in, do some research, and visit a surgeon again to get some information.  The doc recommended a woman up at Hopkins.  He suggests having it done at a facility familiar with transplant patients like me.

Hoping that I get back up on my feet and pose for the camera... like below.

Thanks for listening,

Brian