CMV free and sans PICC Line

Yay! I finally got the word yesterday afternoon that I have tested negative 3 times in a row for CMV, and had the PICC line removed today. I can't express how joyous I am at the prospect of actually taking a shower without a Cow birthing glove on my arm.

I can definitely notice a difference to in my energy levels and how well I have been feeling now that the virus is gone, I am really feeling like my old self again. Well, almost any way. I still manage to wear myself out quite often, but I am able to recuperate much quicker, and I haven't completely nuked an afternoon in quite a while. Sleep is still an issue – as in I sleep like crap or really well.

I actually worked on the Bronco a bit the past couple of afternoons. The weather has been great this week so far, in fact it was like 65 today – nice day. I didn't remember how much fun it was taking the fan off an engine though. Crickey! It's almost worth paying someone else to do it. That's why I like electric fans.

Not sure if I’m coming or going

Homestead Smoke stacks in PittsburghWe returned from Pittsburgh yesterday afternoon, and now we get to go straight back again Thursday night. Gah!

My Hepatic Artery still isn’t delivering the blood flow required to get my Resistance Index (RI) on all parts above 5.0, where a good range is 5.0 – 8.0, so back under the balloon I go. Damned early too – which hopefully means I get to come home Friday, not Saturday.

The docs are going to perform Angioplasty on the artery again to increase the opening, which I hope works – because if it doesn’t, they will have to resort to a surgical solution. Not at the top of my list, but beats being dead.

It’s been nearly 2.5 months know, and I feel like a close resemblance of myself rather than a mere shadow, and I am beginning to gain my perspective back, so I’m no where near as apprehensive about this as I was on the first attempt.

Kiss the Chauffeur goodbye!

I am finally under my own power; released under my own recognizance. So I treated myself to lunch, bought some new batteries for my awesomely awesome watch, and bounced around the town and chatted with some friends and coworkers for quite a while. It was good to get back to the office, and I will be starting to do some work; albeit very limited, and for short bits of time – but I am going to start to get back into the swing of things so that when I do return to work, I don’t go back cold-turkey and wind up passed out with my face on the keyboard at 3pm.

OMG! We took the kids!

Ha! We did, both our goony little monkies went with this time and we all stayed in the hometel. That’s what Donovan used to call the Hotels we would stay in. It was mostly fun too, the boys were insane almost up until they were forced into slumber, and Dylan went all Rambo on a photo in the car on the way into town. They stayed up until 10pm or so, but that was mostly because we didn’t eat until after 7pm, and didn’t get back to the Residence Inn by UPMC until around 9pm.

Rather than suffer the entire Liver Clinic through our rampaging hoard, Litsa took the boys to Ikea , and loosed them into the ball cage. Since Ikea has a kid care, it was all good for everyone. I was a little bummed I couldn’t go, but I know it would have been a shorter trip since I don’t have the energy to walk around gawking at everything there yet.

She bought these great Dog Butt hooks to go on her wall, and they’re hilarious.

Luckily, for this next trip we have friends who are generous enough to be able to occupy our kids. This one would be a bit tough to work around with the kids, as I will have to be immobile and laying down for 4 to 6 hours after the procedure, and will be quite sore for a day afterward. Immediately after would be tough, since I would totally incapable of handling either of them. We are lucky.

One of these days I would like to go to Pittsburgh for no other reason than to have a good time….

I’ve got a mountain to climb before I get over this hill…..

It's 11:30 on a Saturday, and I think I have still only slept a total of 5 hours, and the last 2.5 were the best, and that sucks. As I said to Litsa as I hopped back in bed at around 9;

I'm tired, sore and whinny…

And ya know what? I am damn it! It's days like these that make me wonder when I will be better – whatever the heck that is. So I couldn't sleep last night; don't know why. I woke up around 2am with a coughing fit because of what had to be one of the worlds most galacticly disgusting vurps – then I couldn't get the acid out of my through and mouth for like 20 minutes. The I stared at the ceiling for another spell, and woke up what has to be a million times.

when bad days come around
they always kick the good days ass
into the ground

 The indigestion is probably the worst. It's not like I have heart burn, or an upset stomach that would normally go along with it – just burps that would stun a moose at fifty paces. meh

Thanks to my buddies in the Click club for stopping by and sending me some notes, it's always good to hear from folks. Next time there is a Click Together in BFD, I will show. I promise. No more excuses, well as long as I am given the skinny as to where and when that is. It's amazing how easy it is to not know anything. 

Bone density loss – post transplant

Well here's something new, I guess I at a risk of losing bone mass during the first 4 months after my transplant – which hey! I'm only half way through. I ran across some articles, and other information while poking around the intarweb this morning, a lot of the articles seem to point to the same source published by John Wiley & Sons Inc. , but I have failed to find the actual research data online.

This article summarizes it quite well I think), and seems to draw the conclusion that the body will begin to correct the issue on it's own. Another article from medpagetoday.com goes quite a bit more in depth.

This was all spurred by me looking for more information on Vitamins I should take, there are a couple easy ones since I am supposed to avoid prolonged direct sunlight without a Sunblock of SPF 40 or greater. Well, that is if I want to avoid getting skin cancer – which would be good. So Vitamin D, Vitamin C are easy to figure, you get Vitamin D from the big fusion reaction we call the Sun, and C – well just because it will help in general. I am starting a multi-vitamin too. Other than this, I haven't had a ton of luck getting any more info online – there's a lot of garbage out there, that is hard to wade through – and there is definitely an art to searching online.

I added a ton more info to the links page as well. 

Liver Clinic Monday

Litsa and I trek back to Pittsburgh on Sunday afternoon for my Monday morning Liver Clinic appointment, and I am still apprehensive every time we do this. Part of me thinks that I am going to get bad news and get stuck in the hospital again. Naturally I have no reason to think this, or any ailment to back it up – it is simply an illogical thought popping back into my post-op skull. I blame it on the female liver I now have – it's her fault.

My energy level is extremely random as of late too. Yesterday I had energy to spare, and was up late – until after midnight. Whereas on Sunday, I pretty much slept half the day, and was tired Monday and Saturday too. I can't figure it out. Chalk it up to good days and bad days I guess. I've started goofing around with some projects at home, and it feels good to be "working" on stuff again. Litsa and I went to Lowes the other day and bought some wood for her workbench in the basement, and in a month or two, we will be getting more lumber to frae in a studio for her in the basement. We'll see how that goes…

The house is quite again too. All of the family has vacated for the time being, and it's both nice and strange. It's always good to have family around (especially since all of ours is a plane ride away), but it's nice to have the house back to ourselves again. This hasn't happened for 2 months now, so I guess it was time. Now if only I could drive myself – I would be a happy man. I'm really starting to feel couped up in the house, and I am hoping that I get the thumbs up Monday at Clinic.

Two months: but who’s counting….

It's hard to believe, two months ago I had a liver transplant. Seems strange.

I'm actually a day late (but not a dollar short), yesterday was the actual two month mark, but as a I took two naps and did pretty much jack-squat all day – I never made it to this point, and it never really even dawned on me. Thinking about the last two months, and taking an inventory of what has happened since, it's very surprising how short the list is. Not too many things have gone wrong and I have had only a couple of detours to take on the recovery road.

  • Transplant
  • 3 days in ICU
  • 12 Days in the Hospital
  • Mild Rejection
    • Had a blast of steroids and added Cellcept to my laundry list of meds
  • small clot in the Portal Vein
  • Stenosis of the Hepatic Artery
    • Underwent Angioplasty which widened it to 75% – 80% of full width
  • CMV (Cytomegalovirus)
    • currently taking Gancyclovir through a PICC Line

    I have been lucky. And I am happy as hell that everything seems to be going well.

    Happy two month transplantversary! 

    :: EDIT ::

    Okay. So I guess I am counting …. 

    Coming to visit will not kill me…

    I was talking with some friends today, and I was surprised by a comment made by some co-workers, that if they came to visit me I could catch a germ and die, so they shouldn’t. I don’t want to alienate or belittle anyone, and I can see how this could be misconstrued, but that is really not the case.

    While it is true that I am now and forever to be an immuno-challenged type, it does not automatically mean that any ol’ germ or virus will make me kick the bucket. It’s quite the opposite in fact. I mean I am currently infected with a virus that if left unchecked could kill me – but that doesn’t mean it will. There are certain things and situations that I have to avoid in order to stay out of the hospital, recently inoculated children being a big one. Since in most cases, they use live virus in the inoculations – if I were to come in close contact with that child if could be bad news for me. There are other things too, our cat is an inside kitty now, and (unfortunately) I am no longer authorized for Kitty Litter duty. Damn! I loved that part!

    Here are a few basic tips of things to avoid:

    • Avoid overexposure to the sun.
    • Avoid all alcoholic beverages.
    • Don’t smoke.
    • Check with the transplant team before having dental work done to see if antibiotics are necessary.
    • Avoid travel to countries that require immunization for smallpox, measles, German measles, or any other vaccine containing a live virus, because liver transplant patients cannot receive these vaccines.
    • Avoid contact with anyone who has had a live vaccination.
    • Avoid people with colds and communicable diseases, such as chicken pox, measles or herpes.

    The reality is that most people live long, healthy lives after having a transplant, and that is exactly what I am working towards. The hardest part for me is going to be avoiding sick folks during those months when it is bad. People routinely go to work sick, which is flat out not worth it. This has always been a bone of contention with me any way, but now it’s not going to get any better. If you’re sick, stay home. You are more use to your employer at home than spreading sickness through a poorly ventilated office.

    Oops. Digressing all over the page.

    There is plenty of good info on dealing with life post transplant, this is just 1 link – http://hora.cpmc.columbia.edu/dept/liverMD/faqs_posttx.html

    The Mayo Clinic , UPMC , and many other Hospitals have a wealth of information online and easily available. There are more listed on my links page.

    I guess the long and the short of it is, if you want to stop by – do. I don’t don’t bite unless asked to.

    Energy crisis – is it the 80’s or what?

    Man, if only I felt as good as everyone keeps telling me I look. I ran into some folks I work with again the other day, Amber, Violet and Bev – and I guess the consensus is the same – I seem to be doing well, or at least looking the part. Even the gal at the Sports Cafe says so. I wish I could live up to the image I seem to be portraying, because right now I am beat. Whipped. Toasted.

    I actually felt really good today, better than I had felt in some time. A seemingly good amount of energy, almost normal in fact. So I set about my day building up a new Linux server so Litsa and I could share files and such regardless of what I am doing on my computer. That went well, and it took me a couple of hours in the chair, with some marginal roaming while waiting for stuff to install, reboot, etc. It was nice to do some geek junk today, felt good. I know – you're like WTF?! How is building a computer fun?! Hey! It just is okay?

    I had to run to Tops around noon to get some drugs re-upped, so I didn't run out and be without. No biggy, took a whole earth shattering half hour to go there and back. Then I sat around chawin' on some Pizza, and did what? Played Legos with the youngest, Dylan, who turned 3 yesterday. We built a pretty swell fire station (which was later slightly altered by Donovan – who apparently moonlights as a tornado). That was fun, and lasted a lot longer than I thought.

    Really, the majority of my day was spent upstairs, in the chair, being chained to my computer.

    Lesson of the day

    It's a lot harder than I thought just sitting in a damned chair. And if I am honest, I'm tired of getting so flippin' tired at night. I wind up falling asleep and then being wide awake for a couple more hours, and I would rather just go to bed, not stay up watching retarded late-night on the boob-tube.

    I want to get out and work on my Bronco, but I know what will happen now if I do. I will wind up warming my chair for a disproportionate amount of time which is diametrically opposed to the amount of fun I actually would derive from the act. Short answer? Not really worth it.

    meh