Entry 13

9/28/10

Good evening, World!

Time has flown!  I can't believe it's been 11 days since my last post.  I've missed my blog...

Recovery had it's ups and downs.  I swear, getting around the house with the catheter for 5 days was like having a ball and chain!  I realize that thing has it's purpose but it's WICKED uncomfortable!  The recliner was my best friend during that time...

The first few days went like clockwork.  Some discomfort - that's to be expected.  But, no pain.  Everything was progressing as it should...until Sunday...

Those all-too-familiar sensations started kicking in - burning...urgency...  Yep, my urine's dark.  Oh crap!  I know my body and realize that I am coming down with some kind of infection.  Why didn't they send me home on anti-biotics???  God knows what foreign objects they had inside me...  I start to get annoyed that the doctor didn't talk to ME after the procedure.  Hind-sight.  I convince myself that Monday is only a few hours away; I will contact the doctor's office in the morning.  It was a pretty uncomfortable night but I popped some tylenol and managed.

I called the doctor's office first thing Monday morning and advised them on what was happening; my follow up appointment wasn't scheduled until Tuesday but I advised that I would be more than happy to come into the office today to get checked out so we could tackle this infection before it got too bad.  I left the message and waited for the call back.  When the nurse called me back, she asked if there were any blood clots in my bag or if I had any issues with drainage.  At that point, the answers were "no" and "no."  She advised that there was no need to be seen that day; all I needed to do was increase my water intake.  Ok...you're the professional...  Like a good patient, I do as I'm told.

Yep...Murphy's Law...

As Monday unfolds, my output got darker, I started passing small clots, and started having difficulty draining into my collection bag.  UGH!  Sometimes, I really hate being right!  At that point, I just needed to sit tight and wait for Tuesday.  Tylenol PM helped make my last night sleeping in the recliner manageable.  I started the day with a bariatric follow-up appointment; my uro follow-up isn't scheduled until 1 pm.  I was happy to get a great report on my bariatric progress - down 91 lbs!  Following that appointment, I decided to call the uro and twist some arms so I could be seen earlier and start some anti-biotics ASAP.  They agree to see me right away and start the check up but advised that the doctor would not be seeing me until 1 pm.

Thankfully, I didn't need to wait long once I arrived.  A very nice (but young and inexperienced) aid settled me into an exam room.  The poor kid didn't know what to make of me as I started rattling off my symptoms, suspicions of an infection, multiple requests for a urinalysis, and demands for anti-biotics.  All he could say was that he would advise the uro nurse and that I should revisit my concerns when they come to see me.  He did an ultrasound of my bladder and determined that I hadn't been retaining any urine as it appeared pretty much empty.  The nurse was obviously pulled in several different directions that morning as she was triaging patients.  At one point, I could hear my aid discussing me through the door; I could tell she wasn't happy and that she and I had two TOTALLY different views regarding the urgency of my care.  I had a few choice words for her that I shared with myself silently.  My suspicions were confirmed when she entered the room.  In short, she asked a few questions, removed the catheter - thank God - and then flushed out my bladder.  Her take on all this was that: 1) I wasn't drinking enough water, and 2) I need to urinate more frequently.  Although I just emptied my bladder, I still felt the need to go again.  She said that was normal and that this sensation would go away.  Then, she sent me to lunch until my 1 pm appointment with my doctor.

After a couple trips to the restroom during lunch, I actually did start to feel a little better.  Maybe the nurse was right???

I had an interesting visit with my doctor at 1 pm.  I took the opportunity to discuss my case in more detail than he liked.  It was apparent that the appointment was taken longer than he wanted.  I didn't care.  This man saw my urethra inside and out.  I wanted answers.  He reviewed my surgical history and overviewed the procedure that was just done.  He informed me that he was able to remove a mass approximately the size of a finger from my penis; he was able to work it out through a fistula and did not require surgical intervention.  This mass was calcified hair from the hair-bearing skin used in my urethraplasty years ago.  Sadly, he advised that I would likely get this again at some point in the future.  During the appointment, I gained a better understanding of my urethra and fistulas - apparently, I have several.  He advised that any surgical treatment for me was beyond his expertise and the expertise of other local uro surgeons.  Centers of excellence would be my best bet; he recommended a doctor out of Boston who is about to retire.  A productive conversation with my doc.  Though, I did make sure that he gave me a script for anti-biotics before we wrapped up - just in case...

It was nice to be able to walk and drive without having the catheter!  The rest of that day and the next went like clockwork!  No pain or discomfort.  Clear output.  I felt great, so I held off filling the script.  Life was good.  Until...

Thursday morning.  The dark urine, discomfort, frequency, and urgency were back!  And, before noon, I was passing blood clots the size of dimes!  No man should ever have to pass anything like that!  The sensation of it all was enough to make me want to vomit!  I had several boughts of this before I broke down and asked my wife to fill the script.  It was time for the Cipro!!!  By that night, I was already starting to feel better.  Thank God!  That was the most nauseating sensation that I have had in a VERY long time!

Things continued to progress well for there on out!  The recovery time allowed me a chance to rest up and begin to contemplate my nexts steps regarding my hypospadias.  I was SO ready for a fistula repair.  I was mentally prepared for it.  My belief is that I will start doing some research on national centers for excellence for reconstructive urology.  Maybe next year will be the year that this dream of mine comes true?  Who knows?  I do know one thing - I've had enough procedures for this year!

The moral of the story: know your body and advocate for yourself; they may be the medical professionals but this is YOUR body!