A New VA - Part 1

Moving to Kissimmee also moved me to a new region in the VA system. You would think that it would be straight forward since all my information is in the computer system. Nope; Not going to happen; let's reinvent the wheel.

I get assigned a new Primary Care doctor - It's up to him to refill my medications ... and to place consults with the specialty clinics I was seeing in the old region. I get in to see my Primary Care, and he doesn't refill all my meds (leaving out some of the important ones). He also fails to send ANY consults for Specialty Clinic followups that I needed. He did send me to Cardiology - which was a waste of time. Cardiology has already said they have done all they can do and it will take a life threatening event for them to do more.

I started the process of kicking him to the curb ... and what a nightmare that was. By going around some people, I did manage to get into one specialty clinic (Pulmonary) and the Doctor there sent out consults for the other clinics. Pulmonary also said I have, "Compensated Metabolic Alkalosis".

Neurology agreed to see me; Endocrinology declined the consult - REALLY? More on Neurology in Part 2.

I finally saw my new Primary Care - we seemed to click and he agreed with most of my requests - more consults placed and various test ordered. He ran out of time and scheduled a return vist with a 1 hour time slot.

Endocrinology agreed to see me after the second consults (and the test results) More on that in Part 2.

With a few exceptions, the Orlando VA is as good as the North Florida/South Georgia VA Region. It is disappointing that the different VA Regions tend to act as totally different entities. If something is ordered in one Region, you would expect it to get done in another Region without massive quantities of red tape, but ....

More on the local VA in another blog.

Initial thoughts on Power Assisted Wheels

I had the first opportunity to give the Power Assisted Wheels (Quickie Xtender Wheels) on my new wheelchair a trial run - or three.

Saturday, March 7th my sister and I went to the Lowry Park Zoo in Tampa, Florida. I have to say that I REALLY liked the Zoo. All the staff were friendly and helpful. We decided to stay for the Zoominations after hours Chinese Lantern Festival, so I knew it would be a long day. I kept the wheels powered off a good deal of the time and my sister pushed me. On the uphill inclines and the rough boardwalk (VERY rough Boardwalk!), I powered up. The assist is REALLY amazing. With just a few fingers and a small push I moved up the inclines and across the rough areas. Even with my sister to assist and minimized use of the Power Assist, the small battery that the VA furnished was close to minimum charge at the end of our trip to the Zoo.

Sunday, March 8th found us at SeaWorld Orlando. It was VERY crowded and long waits in line were the norm. I thought it was because Lynyrd Skynyrd was showing, but once inside I found that it was a busy day everywhere - not just at the concert venue. Very little shade and HOT! I wanted to see how the battery would perform with minimal assistance, but we ended up with a short stay. A few hours of use had the battery down a fair amount, but I still was conservative in use.

Monday, March 9th I set out on my own at EPCOT in Walt Disney World. I planed on staying all day, so I tried to use the Power Assist only when needed. I also turned it off in crowded conditions. I made a few stops in the Future World area, and then headed off to "The Countries" for Flower & Garden (and the food). I spent 4 hours circling the Countries and headed back to Future World for a couple of rides and lunch. After a few hours up front in Future World, I headed back to The Countries for Dinner and to get ready for the Illuminations fireworks show. I spent a while checking out some of the shops, and then decided to eat dinner at The Rose & Crown Restaurant in "England". By the time Dinner was over, my battery was in the orange (last Charge Level light lit). Rather than risk having a dead battery and an uphill roll in the dark, I decided to head back to the car. By the time I had made it back to the car, the battery was almost dead and I was getting the "Low Battery" warning.

Overall impression -

The Good - Power assisted Wheels are a MUST for anyone in a wheelchair that has low upper body strength or an arm or shoulder injury! The assist on inclines and rougher areas in really something you need to experience.

The Bad - The NiMH battery is NOT for the active wheelchair user! It will NOT last a full day of activity. For someone that rarely gets out for a full day or has someone to assist for a portion of the day, it MIGHT be okay ... but.

There is a Lithium Ion battery available that has TWICE to capacity of the NiMH version and would be MUCH more appropriate for the active user. I am going to try to get the VA to upgrade my battery to one of these ... and try to get a FreeWheel.

Finally ... but!

Yesterday I drove to Panama City to pick up my wheelchair from a VA contractor. I could have waited until FRIDAY if I wanted them to deliver it ... I was impatient.

Team Adaptive is less than stellar. The people are friendly, but their final performance was less than stellar - The tires were inflated to 25 psi ... 65 psi specified pressure; The brakes were incorrectly installed; the battery was NOT charged; there were tie wraps still hanging from several places; NOT what you would expect from "the experts".

They offered to sell me a carrier - only $500 for a tilt rack or $1500 for an electric hoist version. Yeah, right.

The VA will be hearing about Team Adaptive ... .

The good news ... I finally have my wheelchair and my right arm can start to heal. Once it's healed, I can begin training on my racing chair again!

The chair ... it's purple! You can see how the brakes were not installed correctly - they are NOT supposed to angle like that.

 

Xtender Power Assist Wheels. I can take two fingers and push on a firm level surface!

The Right wheel also has the battery pack ...

The left wheel ... yes, I'm powered by Yamaha!

The cushion the VA provided is fabulous! it has Two foam components, a gel pad, and 3 pelvis stabilizers ... and is a pressure distributing cushion! Note the angle on the brake - can you tell that Team Adaptive REALLY pissed me off?

First impressions:

Power assisted wheels are FANTASTIC! They take a LOT of stress off of your arms and shoulders. They also assist on inclines. If you have an injured arm or a disability with decreased arm and hand strength, you REALLY need to talk to your doctors and see if you can get your insurance to cover a set of these wheels!

The battery pack - the VA was Penny Wise and Pound foolish. There were THREE possible battery packs - they choose the smallest capacity. For someone that mostly stays indoors, it would be fine. For someone like me that is trying to stay active, it it less than ideal. It is also a Ni-MH battery - which typically has a 1 - 2 year life expectancy. The battery packs aren't cheap and it will cost a lot to keep me in supply with a good battery. Even though it has a higher initial cost, the Lithium Ion battery pack has TWICE the capacity (10 hours of use vs 5) and a slightly longer life expectancy - which would make it a cheaper choice in the long run.

The cushion is far better than I expected to get. I have NO pressure points sitting on it - something EVERYONE sitting for a long time needs to worry about! Good call, VA!

The chair is an ultralight Quickie 2, BUT the Xtender Wheels add a good deal of weight. It is NOT something I want to lift in and out of a car without using the quick disconnects to remove the wheels and lift each component individually.

I have a cousin that is a welder, and he is going to build me a small rack that will allow me to roll the chair onto the carrier. It will mount in the receiver hitch I currently use for my racing chair carrier. I'll blog about the rack when it's ready.

WTF, VA, WTF!

October, I get told I need to be in a wheelchair;

December, I FINALLY get into the VA Wheelchair Clinic;

I get read the riot act because I waited so long to get a wheelchair!;

I am told 6 weeks, with 3 to 4 weeks being typical times to get a wheelchair;

7 weeks later, I am told their were some technical issues, but they had been straightened out and I would get my wheelchair in 1 to 2 weeks. ...

We are no 12 days later, and since I had heard nothing, I contacted the VA ... again.

The actual order wasn't sent to Sunrise Medical until LAST WEEK! It may take up to another 5 weeks for my wheelchair to be delivered!

MEANWHILE, my tendonitis is getting worse; me arm is in almost constant pain; just typing this blog is painful!  People in the VA have dropped the ball - BIG TIME!

WTF is going on with these people? It's great that I'm getting a good wheelchair (maybe), but 4 months of delay with constantly worsening injuries is NOT shining a good light on the VA.

Wheelchair Clinic

December 18th saw me at the Wheelchair Clinic at the Lake City VAMC.

I have fought a long, hard fight to avoid a wheelchair; I fought to keep running; at some point you have to face the facts, and realize your physical well being takes precedence.

Earlier this year I was placed in a handcycle, and realized just how stressful it had been trying to run with the problems I have. i can still "run" in a lot of races, and I enjoy it just as much - if not more - than I did before during my run/walks.

Now, I have been sent to the wheelchair clinic because of my fractured foot ... or so I thought.

That was NOT the only reason (but it was a factor) - the risk of falling with an increased risk of a spinal fracture was DEFINITELY in play. The Orthopedic doctor in charge of the Wheelchair Clinic was there to see me o/O . She had some "words" with me, and said I should have been in MUCH sooner to see about a wheelchair! She had ALREADY approved a wheelchair for me! It was NOT pleasant to be on the receiving end of what was essentially someone calling me a horse's ass - even though she was right.

They did discuss a power chair, but I did resist enough - and get them to agree to - an ultralight wheelchair with Power assisted wheels.

The final product should be similar to this one:

 

Am I happy about moving to a wheelchair full time - hell no! Will it be for the better? In hindsight, I will probably admit that it is.

This will take the load off of my injured right arm (confirmed that it IS tendonitis along with the previous injuries) and allow me to resume racing in my handcycle at some point.

Bittersweet, but ...

Endocrinology

December 16th, I traveled to the Gainesville VAMC to see Endocrinology.

After an extensive workup, the Fellow went to talk with the head of Endocrinology, and I had the (questionable) pleasure of having a workup by her, too.

They are concerned, and want to find the root cause of the Neuropathy and Foot Drop - possible causes mentioned in the Doctor's Notes are scary ...

1. Guillain-Barre syndrome - possibly caused by a VERY adverse reaction to a Flu Shot while on active duty;
2. Subacute Combined Degeneration of the Spinal Cord - oh joys.
3. Possible exposure to Agent Orange

They have also confirmed the bone density loss ... and the increased risks of spinal fractures - especially IF (when) I fall.

Lots of lab work ordered, and return in 2 - 3 months.

Fracture Follow-up

November 19th, I saw the VA doctor for a followup on my fractured foot - not good.

Radiology says there is "little significant change" since the X-rays in October. Even with Large doses of Calcium and Vitamin D3 and the use of the electronic Bone Growth Stimulator, "little significant change".

I'm still supposed to stay off of it unless "absolutely necessary" Non-weight bearing and mostly bed rest.

To top things off, because of the use of a walker to keep the weight off of my foot (and the last two races), I have tendonitis in my previously injured right arm.

This is starting to SUCK!

Next up - Endocrinology and Wheelchair clinic in December ... and a fracture follow-up in January.

One more time

I hadn't heard from my 'New' Neurologist by 1:30 PM, so I called the Neurology Department at the Gainesville VAMC ... and was told:

1. You have an appointment in September - as if that was supposed to answer my immediate requirements;
2.  The Neurology Doctors (Fellows or Residents from Shands) are only here twice a month, that's why you haven't (and probably won't) be contacted by your new Doctor before your appointment in September. Only twice a MONTH - Really? This is the ONLY Neurology Specialty Clinic in the VA System in the North FL/South GA Region. It covers North Florida from Ocala. north to the FL-GA Line and from the Atlantic Coast to the Apalachacola River. It extends into Georgia up to Valdosta. You are telling me you only have the Clinic open TWICE a MONTH? They should be open AT LEAST once (if not twice) a WEEK!;
3. I then asked to speak to the Chief of Neurology - he wasn't in, yada yada;
4. I then asked to be put through to the direct line to the Patient Advocate (not the voice mail line) - suddenly I was put through to the Chief of Neurology that wasn't in o/O;
5.  He took my information, said he would review my file and call me right back;

It was more than a few minutes, but he told me he had reviewed the past few YEARS of my chart so he would have a better understanding of my case. The CT Scans needed to be followed up on, but he didn't think the problems shown had any SIGNIFICANT impact on my Neurological issues; My progressive problems were PROBABLY just that - progression of my existing condition; he didn't want to do any invasive procedures such as a myelogram until more in depth nerve conduction studies had been done.

I have an appointment at Gainesville VAMC on Monday (nothing earlier than October, oops September - yeah, right). They are going to do a comprehensive EMG, and then I see the Chief of Neurology ...

The best part of all this ... I first saw the Chief of Neurology when I had my LAST EMG studies and HE is the one that pointed to my Lumbar Spine as the root (see that play on words - tell me I can't pun) cause of my lower extremity neurological deficits!

Follow-up

Since I never heard back from my Neurologist, I called the Gainesville VAMC yesterday. My Neurologist was a Resident/Fellow from Shands ... and graduated and no longer was associated with the VA; they had to assign a new Doctor to my case; he would review things during my follow-up appointment in OCTOBER; call my Primary Care Physician in Tallahassee; yada yada.

Needless to say that was frustrating.

I sent a Secure Message to my Primary Care Physician at the Tallahassee VAOPC ... and the Nurse noted that I had contacted Neurology at Gainesville, so the matter should be resolved. o/O

I responded back that it wasn't resolved, and called the Patient Advocate for my Region - and had to leave a Voice Mail and was told it may take up to 48 HOURS for them to respond.

It only took 24 hours for the Patient Advocate to respond. They contacted Neurology ... My October appointment has been moved up to September (something 'impossible' yesterday); I have a new Doctor assigned, but he is out today (but is supposed to contact me tomorrow); yada yada.

My Primary Care Physician called - he is filling the prescription that the out-going Doctor failed to fill; told me the new Doctor's name and verified that he has a message waiting for him; yada yada.

I feel a little better about things now - I was falling through a crack and managed to patch it up some. Now I just need to see where we go with the CT Scans of my Spine that show "Significant Abnormalities - Attention Required"

On A Positive Note

I am trying hard to get the 'right' crank arms for my handcycle. Katie (RT at the VA) has a quote from Top End, and is advocating for me to get it approved by a Doctor and the money allocated. We shall see ...

I also have my neck rest in from The Finer Recliner!

 

Steve Sussmann is great to work with and has great products - I highly recommend him!

The neck rest will get it's first trial by fire next Saturday during the St. George Island Sizzler. Given the temperature and humidity levels we've had lately, fire might be an understatement.

The Neurological State of the Body

My VA Primary Care Physician has not been happy with my falls, etc ... so he set up a follow-up appointment with Neurology. I'm not happy with a FOUR hour drive to see a VA Neurologist ... and I'm not real happy with what he said.

He feels some of my problems are due to Intermittent Circulatory Claudication - so he is scheduling an appointment with Vascular Surgery for ultrasound testing;

He is concerned about some finding and is setting up Cat Scans of my Thoracic and Lumbar Spines (can't do a MRI because of the metal in the Right Ventricle of my heart);

Additionally, he is setting up a couple of gallons of blood work (maybe not that much, but a LOT), because some of my issues can be caused my some Vitamin and Mineral problems;

All this coordinated through my Primary Care Physician in Tallahassee.

Once the results are in, then more intensive testing will probably take place - oh joy!

Other than that, I'm in pretty good shape. I'm getting a prescription for an anti-nausea medication to take during my Migraine Headaches (and possibly be placed back on Fiorinal with Codeine - everyone needs barbiturates and codeine [NOT!])

On the other hand (aka a short rant).

After actually doing some training runs on the Force 2, I'm starting to see a couple of minor issues.

1. I had to adjust the crankset to its highest setting just to clear my legs. Because it's so narrow, there is little room for adjustment. I have ordered some crank handle extensions that MIGHT let the handles clear on the sides and let me drop the crankset down some. With the crankset up as high as it can go, I'm not cranking at the most efficient angle!

2. I had to adjust the seat position some to try to clear my chest from the crankset and handles. Maybe the handle extensions will help here too.

3. I'm really beginning to doubt that the extensions are going to be enough - which makes the fix very expensive. The next step requires changing out the bottom bracket, crankset and handles ... which is about $500. I can't see why so much has to be swapped out, but Top End is looking at that bottom line. All you should have to do is swap out the crank arms, but Shimano has a proprietary spider on the crankset the Force 2 comes with.

4. That brings up another touchy subject - the crankset. Why the &@#$%^ have a 104mm BCD on a handcycle? It's not like it's a Mountain Bike that needs the clearance. It makes chainring selection rather limited. I see no reason they couldn't have gone with 110mm (or even 130mm) BCD - which are standard sizes for road bikes.

5. Yes, disc brakes would have been a little more expensive - key word LITTLE. Disc brakes require less 'squeeze' to activate - which IS a big deal when your arthritis is flaring in your hands. They are also more consistent in the wet ... such as after (or during) a rain or in a damp, foggy day.

6. An 8/9 speed hub - really? Yes, you can usually put a 10 speed cassette on the 8/9 speed hub, but an 11 speed hub works with all 4 cassettes and costs little - if any - more. The 11 speed hub is also better in a lot of ways. Why not go with a better product? My guess is the bottom line.

7. No, the VA won't furnish 'real' racing wheels (and I don't disagree with that) ... but it would be nice to have something better than the bottom end wheels and tires that come standard on the Force 2. If you are getting a competition  handcycle doesn't it make sense to get competition level wheels and tires?

Overall, I think the VA was penny wise and pound foolish. They HAD to bring the cost in below a fixed point because of rules, etc - and I can see that making sense in a lot of cases ... but I'm the square peg that doesn't fit that round hole. There needs to be some wiggle room for the special cases - such as the standard crank arms that I truly believe are NOT going to work out and will have to be swapped out in the long run.

Mine, ALL MINE!

I was fitted for MY handcycle; took it for a test ride; had it tweaked; and took it for another test run.

it's the blue one.

 

Sporting my Achilles International shirt!

Katie Blunk is fantastic! She's the VA Rep that is in charge of the Adaptive Sports Equipment program in Florida. It's because of her and her staff that I have my new ride!

I wasn't the only one happy today - there were two other Vets getting recumbent bicycles today, also!

I took it for a little spin after supper. Not in a hurry; not really dressed to race; just a short little test run - 1 mile in just under 10 minutes with a max speed of over 13 mph on level ground.  Once I have taken some training runs, this is going to be a jet!

WooHoo!

MY handcycle has been delivered to the Lake City VA Hospital! I have to be there early tomorrow morning to have it set up for me and take a few test rides to get it tweaked for optimum performance. There will be two others there getting their new rides, also, so this will be a good chance to get some pointers.

I will try to get some photos during the set up and test ride phase. Check back tomorrow evening.

Bittersweet ... with some good.

At 10:30 PM on April 2nd I was on to road to Orlando. After too many hours of driving I arrived at MCO (Orlando International Airport). jetBlue was my airline of choice to get to BOS (Logan Airport, Boston, Massachusetts). There wasn't TOO much discussion about my racing chair being a wheelchair that they would have to fly for free. Since it was my ONLY luggage, it was probably an easier task.

An easy flight up, and I met with the people from Northeast Passage to turn in my leased handcycle.

Over 200 miles in just a few months. Sad to see it go!

Then it was back into the BOS terminal to wait for my flight back to MCO - with a stop at Boston Beer Works for lunch ... and some hydration. Flight back to MCO was a little rough because the weather out West was starting to pick up. A long ride back home had me arriving around 1 AM on the 4th.

But, I received a couple of e-mails from the VA just before and during my trip.  They have approved everything, and a PO has been issued. Now I just have to find out exactly what was approved and when I can expect MY new ride.

Good news ... and then not so good.

The good news: Yesterday I was at the Top End factory to be fitted for the handcycle that the VA had approved. The technician felt that the Force RX

would be the best fit for me, and made all the measurements after I went for a test ride - WOW, what a thrill! I was flying on the test run!

The not so good news: While I was on the way back home, I received a call from the VA ...

The VA would not approve that model unless I was a diagnosed quad or paraplegic.  They had discussed it with the technician, and settled on the Force 2 - with a few modifications.

 Not as sexy; not as many tweaks for speed ... but still a nice ride.  One thing I give up - being able to chose a color - mine will be blue. I have thought of a few tweaks I can add ... and may do so as things move along.

What kind of tweaks am I considering?

1. A gear hub. Why a gear hub? With a 3 speed hub, I will have a direct drive that wouldn't change the current gearing - BUT, it would add an underdrive for an extra low granny gear to climb those @#$% hills. It would also add an overdrive for screaming down the other side of those hills.

How fast was he going? 75 KPH (over 45MPH)!  Pretty fast when you're only sitting a few inches off the road! That was without an overdrive, so I might end up a good deal faster if I wanted to push it on the right hill ...

2. Upgraded wheels. There are some VERY nice carbon fiber wheels that have much better aerodynamics than standard wheels. I particularly like the specs on the Zipp 303 wheels - especially since you can get those with disc brakes.

 

3. Tires. The Continental Grand Prix 4000 tires on that Zipp wheel would be my choice.

4. Osymetric Chainrings. 

What the hell is that? It's NOT round!  THEORETICALLY, it takes some of the load off of your legs (arms in the case of a handcycle) when you are at the weakest point of your stroke and adds extra power when you are at the strongest point.  The judges are out,  but it seems to be a personal choice. Some people love them - some hate them. There are other companies that make oval rings (and these aren't a true oval), but this company has addressed some of the issues people had with the oval rings. Will I love them - or hate them? I don't know, but I WOULD like to try them out.

5. Who knows! There will always be something you want to tweak.

A little background

It's a longish story and I'm going to go into some detailed descriptions at times.
    Expectant mothers should not ride.
    Service animals are not allowed on this ride.
    Riders should be in good health, free from high blood pressure, heart, neck or back problems. This ride may aggravate motion sickness.
    Guest must transfer from wheelchair or other motorized vehicle to enjoy this ride.
    Guest with small children may take turns riding this ride. Ask a cast member about doing a baby swap.
    Fastpasses sometimes run out prior to the end of the day.


About five years after I got out of the Military because of various medical issues - one being cardiac - I had my first pacemaker inserted (by the VA) in the upper left chest area.  It was a single chamber, fixed rate type that only paced the right ventricle at a set lower limit, and eventually failed.

The second was a Dual Chamber Dual Lead variable rate type pacemaker (it added a second lead into my Right Atrium and paced both chambers as needed).  This involved tunneling the original lead to the right ventricle across my chest to the right side, since they could not feed the second lead into the original insertion site into my left Axillary/Subclavian Vein.  The bruises were spectacular.  This pacemaker was great!

Eventually, the battery of the second wore out, and this led to the insertion of my third pacemaker.  A 'new and improved' pacemaker version was installed, but there were a few 'issues' involved.  The leads from my pacemaker to the inside of each chamber of my heart had an inner and an outer conductor - one of the conductors on my Right Ventricular lead had failed over time.  They wanted to replace it then, but the surgical suite was not available (yes it IS a fairly major thing as you will find out later on this ride) ... so they let it ride.  This meant that the pacemaker was forced to perform in less than optimal mode.  Additionally, I had a "minor" infection show up in the surgical site a week or so after surgery.  The surgeon waved the 14 days of antibiotics wand and said all was ok.

I never felt "right" with this pacemaker; I was a pain in the ass of the cardiology department at the VA Hospital in Gainesville, FL; etc., etc. ... Then came March of 2006!  I was at Gainesville for my annual pacemaker check, and I pointed out that I had some 'puffyness' over the pacemaker site, and it felt a little warm.  The Pacemaker Tech had the on duty Cardiologist over asap.  Antibiotics and return in 10 days.  On return I saw an intern from Shands (this is the routine).  By then, I had some open drainage from the old suture line.  He wasn't sure about more antibiotics, so he called in the resident that was the Cardiologist supervising that day.  He said it was a pimple that was draining.  After 13 years of being a Firefighter/Paramedic, I knew he was full of shit, but I headed home - a four hour drive.  Half way home it REALLY started draining!  I was at the VA OPC (Out Patient Clinic) in Tallahassee when they opened the doors the next morning.  Triage sent me straight back to their 'micro ER'.  My Primary Care (a real gem), took one look and called in the local surgeon.  He took one look and said MRSA.  Cultures were taken; big gun antibiotics were handed out; - all the trimmings.  Later that day, I was called my my Primary Care - he said, get on the road to Gainesville RIGHT NOW!  You are being admitted and they are waiting for you!"

A little over 4 hours later (this is longer than that 14 day Safari, isn't it), I was back at Gainesville, FL.  They WERE waiting on me; gallons of blood for lab work; every hole probed at least once; culture this; culture that; your electrolytes are a mess; IV here; IV there; off to your bed - at about 2am.  It had been a LONG day.  The next morning bright and early, in comes a Doctor who introduces himself and states he's the Chief of Thoracic Surgery and I'm scheduled for Monday morning first thing.  They are going to remove the pacemaker; open and debride both pacemaker pockets; debride the tunnel across my chest ... and remove the leads in my heart.    This is MAJOR surgery!  The leads get imbedded in the heart walls - you don't just snatch them out.  It takes some serious equipment!  Next up - Anesthesiology.  Boy was he in for a shock.  I told him I was VERY resistant to being put under and he better bring his big guns.  Finally, the Chief of Cardiology slunk in.  He defended his Resident's call (that it was just a pimple) yada yada.  This has resulted in a Hate-Hate relationship between me and Gainesville Cardiology ever since.  I told him to get out of my room and neither he nor any of his staff was welcome nor would they be allowed to treat me.  That remains in effect to this very day 

Monday came quickly.  The anesthesiologist did his thing; I counted down from 100 - twice; he rethought things and reached back into his bag of tricks.  He started to grab one vial - but he remembered what I had said, and grabbed something else.  After I hit 100 for the second time around this time, he whispered into my ear, This had better work - it's the most & strongest I can give you with the other one".  I was holding on and HAD to get to 100 that time just to check his pucker factor ...    I let go in the 70's and ...

7+ hours later, I'm in Recovery; I'm FLAT ON MY BACK - OMG.  I told them NOT to have me flat!  I sat up, hung my head over the side and  .  The Recovery Room Nurse was totally shocked that I was awake so soon; stunned that I had sat up; and luckily, VERY fast with an emesis (barf) basin.  I then said I needed to make a phone call - out to the Waiting Room.  PureTCrazy (my sister, Rita) and the OldeKoot (The Momma) were waiting for information.  Having ME call might have been a little bit of a shock to them, but I told them I would soon be in Cardiac Intensive Care and when they had me settled in, they could come and see me.

CICU - I had a GREAT nurse.  For the first time in many years I had no pacemaker; some of my meds were very clear that they are NOT to be given in certain medical conditions without a pacemaker in place - guess what.  Let's just say that the On Duty Cardiologist spent 'some time' with me one on one.  I spent three weeks in the hospital at Gainesville with a central line running Vancomycin and other nasty stuff into my body.  Why a Central Line and not a PIC or whatever.  My veins were plugged up to some extent even then (more about this later), and they could not physically insert a PIC Line.  I had a Vacuum Healing System in place - and stayed on it for months!  It was NOT fun changing the sponge packs, etc VERY frequently.  Morphine IV was my friend.  It took the edge off.

Finally, I was cleared by Thoracic Surgery.  They did NOT want to put another pacemaker in because of my risk of re-infection.  I spent years on prophylactic (go ahead - laugh damn you!) dose levels of antibiotics.  I never did recover from the lack of a pacemaker.  I became a couch potato; I gained weight; I ... felt like hammered whale shit on the bottom of the ocean!

Make sure you hold on to your children, the ride gets 'dark' shortly ...

The end of April 2010 finds me at the Tallahassee OPC with a nasty cough, etc.  My WBC (White Count) is over 21000 - which is 'Not Good'.  I get transported to the nearest hospital by ambulance!  I get admitted!  I get stuck with IVs and more nasty stuff is poured into me for almost a week.  While I'm there, I have various tests run and I am scheduled with various follow-ups.  One of these is with Pulmonary in Gainesville ...

Pulmonary in Gainesville has various tests run - one of which is an Enhanced High Resolution CAT Scan of my chest.  The Chief of Pulmonary Service calls me at home and tells me I will be called by Thoracic Surgery to set up an appointment ...!  My medical background (both knowledge and my personal background) leads me down the garden path, and when I go in to see the Thoracic Surgeon on July 12th, I have my bags packed.  The Surgeon used to be the Chief of Thoracic Surgery at the Gainesville VA - until he got to tied up doing Heart & Lung Transplants at Shands    He was called over because of ME!  We really clicked - I knew the key words and tricky phrases ... and had already 'self-diagnosed myself WITHOUT the CAT Scan to go by.  He didn't pull any punches since he saw I knew the score.  The years of having pacemaker leads in my veins - and the nasty MRSA infection - had resulted in the major veins to my heart on BOTH sides (Axillary; Subclavian, Brachiocephalic and Superior Vena Cava) becoming occluded (plugged up and no rotor rooter was going to help that).  This is 'Not A Good Thing".  For one, the Brachiocephalic Vein is what the Jugular Vein drains into.  Blood goes into the gourd, but it has a hell of a time draining out - this leads to MASSIVE headaches 24/7 ... which I had been complaining of for over a year.  For those interested, this is known as Superior Vena Cava Syndrome ...

July 14th, 2010 I'm back in surgery.  This time they are cracking my chest to get access to my heart; they are "harvesting" (a nice word for ripping out a chunk of vein from each of my thighs) the large part of the saphenous veins from my thighs; they will use those veins to jumper from my Jugular Veins right into the top of the Right Atrium of my Heart  ...  This time the Anesthesiologist was ready - I only made it back to 100 and down into the 50's this time 

Many Hours later -  I'm awake; I'm in Cardiac Intensive Care and the head of the bed is cranked up - woohoo!  I wiggle a little and ummm - I'm sore. 

The nurse is there and asks if I'm ready for my pain meds.  I tell her I'm fine.  (I have an EXTREMELY high pain tolerance to go with the tolerance to pain meds & anesthesia).  PureTCrazy & the OldeKoot are allowed in.  Their eyes are VERY expressive, but they don't say much.  I only spend a week or so this time.  They were VERY surprised at my activity levels and let me go early 

For the first time in YEARS I was feeling better.  I was tired of being a couch potato.  On a telling note, 3 weeks BEFORE the surgery, I had started on Weight Watchers.  I was feeling 'froggy', and after much arm twisting, the Thoracic Surgeon cleared me to start walking.  That was September 17, 2010 at 1:33pm.  I also convinced him that it was necessary for my mental health to ride roller coasters at Disney World.  A little background here.  I had a Cardiology appointment on Friday the 17th at Gainesville; I had a Neurology Appointment in Gainesville on Monday the 20th; it was 2 hours to Disney World - or 4 hours back home; I had vouchers for FL Resident Seasonal Passes for OldeKoot & Myself; I had already made reservations for Friday - Monday at Disney World for the two of us and the car was packed!  With some more arm twisting (and maybe some other threats, I was cleared to "ride any coaster I wanted".  I did.  Expedition Everest; Space Mountain; Big Thunder Mountain Railroad; Rock-N-Roller Coaster ... YEE-HAW, how I missed those for YEARS!

I got home, and followed through on my clearance to walk - I started the Couch To 5K plan.  October 30th, I did my first 5K - EVER .
November 25th, I did another - a 5K Turkey Trot in Tallahassee.  December saw me doing a 5K Jingle Bell Run in Panama City. 

Which leads me to the Marathon Weekend in January of 2011.  I did the Woody & Friends 5K at Disney World! 
February saw me at it again.  This time the 6K 'Flash' in St. Marks, FL.
I registered for the Expedition Everest Challenge on May 7th and did what is essentially a 10K walk.

I was accepted onto the AllEars Running Team for the Disney Marathon Weekend in January 2012!  That has me committed to doing fund raising for Deb Wills (the person behind http://allears.net/index.html ).  The money goes to http://allears.net/AvonWalk/.

I then proceeded to do numerous walks - including 1/2 Marathons. Never fast, but always completed.


That brings us to February of 2013 - and the first of my falls while walking. I wasn't sure at the time what caused to fall, but I would find out why at a later date. That fall resulted in a rotator cuff tear and a deltoid insertion injury. Because of my history, I am NOT a surgical candidate, so I was sent to PT to do what they could. 3 falls later, we realized that I had foot drop. My toes would drop and drag causing the falls. Why was that happening? I have a Spinal Cord Injury that has progressed with time.

The VA doctors said no more run/walks. Being stubborn, I told them I was going to continue. They mentioned a new program primarily for Iraq and Afghanistan Vets to keep them involved in sports (and healthier and cheaper medically in the long run). As a Vietnam Vet that was active in sports, I qualified! The VA is (slowly) in the process of getting a handcycle approved for me.

It's been a LONG and convoluted ride to get to this point - I hope you enjoyed it!