That's a lot of blood!

Wow, I can't believe people actually read this stuff, but based on the reaction that I received from people sending me emails, and posts on Twitter and Facebook, I needed to tax my limited Lyme reduced pea brain and explain a few things about my last post.
To one readers comment, no I am not a professional patient, and no I was not paid money as a test patient to have numerous surgeries! Let me just take a few minutes to take you through my life, back to a time that was filled with excitement and promise to me as a young man.
I was a seventeen year old senior in the Washington Metro area, my life was much like any other kid that age, girls and sports! My passion was the round ball, the pill, the rock, the orange bouncing thing that you try and put into a little round sphere attached to a poll, that's right, basketball.
There is another story that ties to this one about how I got the name Duck, but I will leave that for another time, another day, but don't let me forget because it actually is pretty funny. Anyway, as the literary geniuses say, but I digress, I love that saying, it sounds so....impressive!
The place that I am going with this effort, is to briefly explain to a few of you that read this post, how I actually received 52 units of blood. Since I was the age of 12 or so, I dealt with hip pain, originally it was just aching in my hips. I went to some of the most prestigious diagnostic clinics around to try and figure out what was causing my hip pain, this included the likes of the DuPont Institute in Wilmington De. as well as the famed Mayo Clinic in Rochester Mn. as well as many others. I was quickly told by the "Powers to Be" at the Mayo that I suffered from a slipped capital femoral epiphysis in both my hips, case closed. Oh, by the way, as a senior player on the B-Ball team averaging 26 pts a game, I had to tell the double digit College scouts that were going to pay my way to one of their school's that I had to stop playing basketball immediately, and would not be playing at the College level next year! The term "dropped you like a hot potato" sums it up perfectly, they did!
Now, this is the part of the story that is the nuts and bolts of this story, where the rubber meets the road, the part that explains the 52 units of blood. The following year and years, I had the following: R hip large bone spur removed, L hip large bone spur removed, R hip an Osteotomy, that is when they cut the femur in half, then rotate the femoral head to a new position to expose some new cartilage, and then put a giant threaded bolt up into the femoral head and attach a large plate that extends down the femur to hold everything in place for the seven months on crutches while the bone grows together a half inch and then you can put weight on your leg, no more crutches. L hip osteotomy, same thing... R hip hardware removal, the bolt and plate in my leg, then while I was recovering from one of those procedures, I was attending Radford College in Va. and slipped on ice going to my morning class, yep, broke the plate in my leg holding it together...Ouch! So...had to be driven in an ambulance from Radford back to N. Va. to have the broken plate removed and put back in. Then hardware removal again seven months later.
Once I got to this point, the plan was to keep my God given hips as long as I could stand it, as they continued to improve the procedure of a total hip replacement. I lasted until I was 29 yrs old, then decided I had had enough, lets go to a better place and get rid of my hip pain once and for all, with a total replacement. I chose my L hip because it was in the worst condition. I had my L hip replaced at that time, things were pretty barbaric back then, they weren't nearly as proficient at hip replacements then, as they are now days. Now they do a non invasive hip replacement out of a 3 inch incision, pretty cool. Back then it was referred to as a zipper, cause that rascal was long. OK, so the first replacement lasted a year before they had to re-do it, because it didn't fit right from the beginning. The Dr's said that the manufacturers of the prosthetics just don't make these things for dinosaurs, referring to the fact that I am 6'7", I guess that explains the basketball...So I had the "revision" surgery as they refer to it, and that lasted 8 yrs, then back in for a massive full revision surgery on that old L hip again. Are you bored yet? Almost there, I'll explain those 52 units yet! So once the full revision surgery was completed, things were awesome! The hip felt like brand new, but then.....my luck ran out. At the 7 month mark, that rascal dislocated, ouch!! Went to ER got it put back in place, then 2 months later, dislocated again! This time they realized they had to do another revision surgery. This time, they put in a special made one, it is called a locking ring socket, it is supposed to eliminate the dislocation problem. It did solve that problem, but 8 months post op, it broke.... You got it, back to the drawing board! A custom made extra long, extra big, double secret version.... It worked, but, as a result of the number of surgeries that I have had just on that L hip alone, I deal with Chronic pain from all the soft tissue damage, as well as the muscular damage from so many surgeries on the same hip.
Well, there you have it, that's the short version of explaining where the 52 units went. I probably forgot about one or two more that I had, but what the heck, who's counting, right?

My Miracle

I feel that I did personally encounter a miracle in my life. It occurred once the AID's epidemic came to light, everyone was freaking out about the disease and assuming that you could get AID's just by shaking hands with someone that was infected with the disease.
My miracle occurred the day that I went to my then orthopaedic surgeon for a follow up on a hip replacement that I had. He met with me and told me that he was very concerned about something and wanted to talk it over with me. He went on to say that his staff had reviewed my surgical records, and confirmed that I had had a total of 52 units of blood during all of the procedures that I have had on my hips during the last several years. He went on to explain that all of the units of blood that I was given, was not tested for the AID's virus because they were not screening the blood for AID's at that time. My Dr. insisted that I go get my blood work done, testing specifically for AID's.
Naturally I was very worried, counting in my head the 52 different chances that I had of receiving a unit of blood that contained the HIV virus in it, as well as the good hearted well intended person that donated the unit of blood, not realizing that they may be donating contaminated blood, or a death sentence to the unsuspecting recipient.
Those following days were the longest days of my life, waiting and waiting as each day passed until the call finally came! The voice still echo's in my ear, the one that told me that my test results were negative for the AID's virus. The years following my AID's test results, I continued to hear about person after person that got the AID's virus from an earlier blood transfusion. Hearing this time and time again reminded me of the miracle that I received. These people that were being told that they now have AID's after the one or two units they received, I was thinking about my 52 units, and the miracle that I was blessed with.

Non Restorative Sleep Disorder

If you asked me what a non restorative sleep disorder was a few years ago, I wouldn't have a clue. A few years later, and I know exactly what it is. Quite simply put, I explain it this way, a person spends hours asleep in a bed, but does not wake up feeling refreshed and ready to go, you have a non refreshed feeling!!
It all started a few years ago before I had a clue what Lyme disease was, or sleep apnea. After a few sleep studies, I learned that I had significant sleep apnea, OSA. I was told that once I was fitted with a CPAP mask, I would quickly feel like a new person...wrong! I am still 100% compliant with using my CPAP, but really don't get any benefit from it.

Two years passed, many different sleep aids were used, and finally my Dr. wanted me to try Xyrem as a last resort. I quickly felt like my life had been handed back to me! I would wake up feeling like a new person, I had better cognitive clarity, my memory improved, the pain I have in my replaced hips was better, things were looking up.

There was only one little problem standing in my way, the difference between feeling human again, or like crap! It was called the insurance Co. They would be the ones that would turn my life upside down! I must have come up on their $$$ radar, and they quickly made the decision that because I didn't have Narcolepsy, I really didn't qualify for this medication; this was their way out to cut off my benefits and Xyrem.

I was on Xyrem for about 5 months before they pulled the plug. People around me noticed a major improvement in me; all this quickly went away once I stopped taking the medication. We are now currently at our 3rd appeal stage, to try and get this rather expensive medication covered by the insurance co. I will keep you posted!

Lyme Disease an endless battle

I have been in pain since I was 16 years old. That translates to 34 years. I had my first hip replacement when I was 29 years old. Back then hip replacements weren't nearly as advanced as they are now, so unfortunately, I have had to have 5 revision surgeries since then. The other puzzling part of this story, is that the arthritic pain was replaced with muscular pain, that was always shrugged off, and I was instructed to do more PT. It never occurred to me that I had Lyme disease, I didn't even know what that was. I always just accepted the level of pain that I was in, thinking that hip replacements weren't designed for people with a 6'7" frame. I always said "they didn't make prosthetics for dinosaurs" Little did I know that there were things beyond my wildest imagination that were causing these things, and I was about to make a discovery that would change my life forever!