That all changed one relatively benign afternoon with a phone call to my desk. Since then I have been in a constant state of recovery, dealing with the fact that I am a 36 year old former track sprinter who used to be able to propel himself at speeds generally reserved for cars; one that is now out of shape and over weight and for whatever reason can’t seem to get rid of the tire, and stay on a bike regularly enough to be able to ride the 5 miles to work and home without being exhausted at the end of the trip.

I have no muscle mass any more, and my energy level is about as consistent as the flight path of a Bat. Some days I am raring to go and do so, all day. Other days I will get home and pass out in my chair before and after dinner. Sometimes the stretches last for weeks, sometimes they last for days before flip-flopping. It’s very discouraging and frustrating.

This is where I am. In a sort of physical limbo. I feel good. Other than my INR levels coming back all wonky lately, everything is a-ok, so I really can’t complain. the liver is serving me well, and I am, all things considered; quite healthy. This winter is going to be a brutal one though, I can tell. I’m not talking about the weather either.

If I don’t find a way to get past this obstacle, I’m going to wind up looking like the Stay Puft Marshmallow Man from Ghostbusters……

As a side note… someone really needs to stop letting theior kids build the movie sites…. check the Flash for the Ghostbusters site, I think it’s as old as the movie.

First off, I don’t have to return to clinic for a year! A whole freakin’ year!!! That to me is really almost inconceivable, there was no way I was ready for that to be the case. In part this has to do with all of my numbers looking great; except I had a slight fever this morning, why… I’m sure I have no idea, plus the fact that the RI on my Hepatic Artery was actually better with the results from the last CT scan, than the previous Ultrasound a few months ago. This is indeed good news, and means I may be reacting in a positive manner and not in need of another Angioplasty. You can see what the narrowing looks like in my rudimentary drawing on the right, the left branch is the artery where the stenosis is.

They also stopped my Cellcept, and reduced the amount of Magnesium Oxide that I will be taking. This is good for a couple reasons; first being that if I don’t take Cellcept, and now the mag ox only two times a day – no more 10pm meds! So if I am tired after 8pm I can actually go to bed, what a novel concept. And second, it will cost less dough, or more importantly I don’t need it. They did find I am quite a bit anemic right now, so I am going on iron, but getting off the Cellcept should help too since it reduces your iron count.  Finding out I am anemic is also kind of a relief because it helps to explain why I have been so tired and fatigued lately. Since June actually, since my count was better than what it is now then. So today was a good day.

I also have it on good authority that Prograf may be available as a generic drug soon, so the copay should go down on that as it becomes available.  I am really looking forward to this year and what it has in store for me and my family, my clinic visit was a well needed boost. It’s always good to hear right from the docs that everything is going well and they are very pleased with my progress….

This past year has easily been the hardest year of my life to date. I started the year being sick; and having, in fact, been sick for almost 2 years – in and out of the hospital and local emergency room more times than I care to recount. I am ending the year happy, with family and friends and quite well. Easily 180 degrees off from where I started. I would have never guessed hat getting well would be harder than being sick; its as if I have learn how to be well again and train my mind to accept that I am no longer sick.

I stumbled onto this article on the Esquire website last week sometime, and it really hit home. I’m not a big keeping up with the Jones’ type of guy, and I am not into comparing things – especially diseases or medical afflictions; so I’m not going to try and rationalize whether or not Parkinson’s is worse than having had PSC and a Liver Transplant – but what I will say is that the two have overlapping similarities.

Anyone in this sort of situation can find something of value in this short article, it’s worth reading.

www.michaeljfox.org

www.esquire.com/features/what-ive-learned/michaeljfox0108

I seem to have contracted some bug from the germ factories that are my children, and for the past 2 days have had a fever and a raging, maybe I should say ginormous, grimace inducing, headache. I think the only thing worse than a headache is a toothache. Having throbbing pain in your head is the hardest thing to not just sit and focus on. gah.

I have to go back to Pittsburgh next week for another ultrasound. My bilirubin count has been going up a bit, so they want to get me in so they can have a peek around. It isn’t anything to worry about, so’s I have been told – so naturally I am at least marginally concerned. We’ll see next Wednesday I guess.

Nothing else has changed though, I am still negative for CMV, and my energy level isn’t getting any worse or better; so really I can’t complain. Actually, yeah… yeah I can.

This time of years just blows. It’s dark when I get and go to work, and it’s damn near dark when I leave to go home. It’s starting to snow now, and there’s actually a little bit on the ground. It’s not even like I hate the winter and/or snow – it’s just really hard going from summer to winter. I’m not a huge fan of being cold, so it takes a bit for me to get back into the swing of winter again.

meh. I must go regain my spot in front of the TV now…..

You can refer to me previous post about the numbness under my incision line , and see that little has changed there either, including the fact that it still feels weird when I anything presses against it. As I work more and more on the Bronco, I realize that I still drain energy pretty quick and if I’m not terribly careful I still fall victim to the dreaded afternoon nap: gasp!

My fit level is still a bit discouraging at times though. Litsa and I had a little mini-vacation the other weekend , and man did I tire quickly trudging up and down hills and numerous steeps stair cases in the great outdoors. I know it’s only been 6 months, but it still a bit discouraging. I’ve been trying to walk more regularly with one of the boys, but that’s hit and miss at best, and getting back on my rollers has proven a bit of a challenge. Since I am back to work full time, and things are really busy right now, I tend to come home tired. I also found going to work early every day for 2 weeks straight was a bad idea. From the standpoint that i got really tired in general, and I still haven’t fully turned that around. I was able to complete a lot more work without the phones ringing and such – but that’s about it. I didn’t do anything once I came home.

I have my meds changed a bit again this last week, and now I only have to go get labs every two weeks. That makes me happy – getting poked every Monday was getting a bit tiresome at best, but now it’s getting pushed out more. I have to go back to Pittsburgh for another CT, this time it’s an Angiograph – another Doctor decided they needed a better look at the Hepatic Artery and its flow rates by using the CT. Hopefully this other Doctor doesn’t decide I need to be more aggressive with what we are going to do with the artery, since its flow is still a bit less than 100%.

I guess I will find out around the 6th of next month.

Comfortably numb

Everything in blue is where I have below normal sensation of the skin and muscles (or my huge muscles as my son would say), there isn’t any place left anymore that I cannot feel it if I am touched there – which I think is pretty damned good. But there is a fairly large are where just flat out feels weird almost anytime I touch it or bump it. It’s as if I have been to the dentist and he numbed my belly instead. Okay, well that would be one jacked-up Dentist visit, but you get the idear.

The weirdest part is my navel, it just flat out feels S-T-R-A-N-G-E; strange. Good thing I don’t keep my pocket lint in there anymore, or I might forget it’s in there.

It is getting better, but as with everything else, rather slow going – at least as far as the return of normal feeling below the incision. That’s kinda strange too, and I’m not sure why it is – I think I will have to ask on my next visit; why is it only below the incision? Almost everything is normal above the incision, with the exception of like 3/8″ – 1/2″ area directly above it on my right side.

Look Daddy, there’s an old plane up in the sky

The weather has been just beautiful here lately, and I have spent the last 4 days outside almost 50% of the time working in the yard and playing with the boys. Discovering that my energy level and stamina is directly effected (probably 10 fold) by how hot it is. Litsa and I moved the air conditioner into place in anticipation of the impending glorious summer, and I was almost instantly spent. And not just a little, it felt really odd – and almost like I had just come from a 15 mile forced march. So after that I pretty much didn’t do a damn thing for the rest of the evening, granted that was at 6:30pm or so – so it’s not like there was a lot of day left.

It was a good weekend, and we got a lot done – it really felt good.

Now I’ve got that feeling once again
I can’t explain you would not understand
This is not how I am.
I have become comfortably numb.

The thing that still keeps coming up is that folks find it strange/odd that they didn’t know I was sick or needed a transplant.

Taken one way, it could be that I was the sickest healthy person you would ever meet. More often than not, I looked fine. At times I was a bit on the Mellow-Yellow side, but unless I was sick and on my way to the hospital – you wouldn’t really know I was that sick. Some people made the observation that I did not generally look well, but most did not.

Now, taken another way, it could be that some folks find it odd that I didn’t really talk about it. Which to me is strange. It’s not like the fact that I needed a Liver Transplant to keep on living would just pop up in normal conversation, it seems like a good way to kill someones happy feelings…. So I didn’t talk about it. Some people knew, and they found out through various avenues – but as a general rule I said very little about it. Call it me being private, guarded or just plain in denial. Whatever. More than any other reason, I didn’t talk about because I didn’t want to. It wasn’t anything I wanted to do, it didn’t seem like it was fun thing to have to go through – and I was more able to be myself and concentrate on the tasks at hand without dwelling on this ominous thing I was going to have to go through.

I’ve changed that a bit; if you hadn’t noticed. I’m not the same person I was 3 months ago. I’m not going to say I’m a new man, that’s a bit overdone and quite a misnomer. But it would be just as false to say that this whole experience has not made me different. I haven’t formulated it all just yet – I’m still just trying to get back to healthy and normal; whatever the hell that is.

I do find myself struggling with what, if anything to post. Flogging English is easy, I yap about all things there – but here; it’s different. The topics are more focused, and centrally located to the fact that I am a transplant recipient – one that has an amazingly good run at it so far. And it’s just that run that is making the postings here a bit more infrequent; which leads me back to the strangeness of it. The lack of focus? Or a void in an activity that I have found to be amazingly therapeutic during some of the most trying portions of my recovery. I also find far too easy to slip back into habits that I would prefer not to slip back into.

I haven’t had more than 3 sodas in the last 3 months. 3. I used to drink at least 10 a week, and usually 90% of it was Mt. Dew. Yeee Haaaww! I have made the decision to not drink that stuff anymore – not even diet. I want to shed pounds, and keep my health in a much better state than where I left it before. So far so good. But I still stare down the bottles of Dew at the Country Fair every time I pass the door by to go for a Tea or Propel. There are other habits too, and other things I would like to get back into the habit off. Riding my damned bike is one of them. I used to draw such energy from riding back in the day. It’s been a long time since I have really ridden my bike.

meh

After my first day at work officially, I am tired – even if it was only a half day. I’m a bit sore too, and I found myself limping a bit on the right side as I walked to the car after work. I’m not sure what that’s all about. Back to work I go, primarily in the mornings, since I am far more energetic and attentive in the am. We’ll see how it goes eh?