A couple of weeks ago, I received a letter from my transplanting hospital (UPMC) stating that my Doctor has left the Transplant team. He just so happened to be the head of the team, but it seems to me that I have been left in sort of a patient limbo.

The last I saw of my saw-bones and coordinator I was to start getting regular (how regular I am not sure) ultrasounds to keep an eye on my hepatic artery, and whether or not the flow was decreasing or staying relatively even. I would say normal, but that would infer that it isn’t still at least somewhat reduced – which it is.

Any way, I haven’t heard nary a peep from anyone out west in Pittsburgh since my last visit a couple months ago – so i guess it’s time to pick up the phone and give a shout out…. I don’t really blame them if there is a bit of turmoil going on, I know about turmoil in the wake of senior staff leaving – but it is a bit…. disheartening? No, that’s not it… just leaves me in an odd spot; even if it is only a perceived odd spot.

I guess I just had far too much fun last Friday. You know, sitting in the hospital all day, either waiting, or getting jabbed, and poked, and scanned, then waiting, then more scanning…. It’s all too much fun. So I guess I will just do it again this coming Friday.

meh.

Friday was my annual checkup, so I was lucky enough to get a liver biopsy, ultrasound, and a CT Angiogram – all in one day. Started at 8am, ended at 5:30pm. w00t! w00t! All in all though, the day wasn’t too bad. The guys who performed this biopsy were spot on, and quick. It didn’t hurt any where what I remember the last one to be like. Although I have to say that the first one was only a few weeks after my transplant – and pretty much everything still sucked then.

My trip this Friday is for my clinic appointment so I get the results of all this poking and scanning. All in all, I have been feeling well. This energy level thing is starting to get on my nerves and doesn’t really seem to be getting any better. I would appear to have hit some sort of plateau. This, and a few other things are on my list. I’ve been having some chest pain off and on, and pain in my left shoulder. I know, everyone says it’s cardiac pain – but I have been having it since my Gall Bladder trouble – and the doc said then it was just pain transference – even though they say it is usually the right shoulder that gets it. Still, I will bring it up again with the docs and see what they say. I dunno….

See you on Friday.

I received in the mail my package from TransplantExperience.com today. I found out about this a little while after my transplant, and finally sent in for the information and to sign up for the quarterly newsletter. The package contains a DVD, a diary with questions, note pages and information for patients prior and after transplant – in fact I wish I had found out about this before my transplant as there is a good amount of information here that would have been helpful before hand – especially when explaining all this to family members. There is also a booklet explaining Prograf and what the medicine is, why you want to take it 12 hours apart, and other information including controlling cholesterol and high blood pressure. All of the information they sent looks to be on their website as well.

This is a great site for anyone, and I don’t think it is limited to certain hospitals, I was transplanted at UPMC in Pittsburgh, and the DVD I received reflects that; although there are several organizations listed on their site – so I assume they are all associated with this program.

I just received it today, so I haven’t had a chance to watch the DVD yet – so I can’t vouch for what’s on it, but by the looks of their site – I am sure it will be well presented material. The site and package is also funded by Astellas Pharma, the company behind Prograf. I like the fact that Pharmaceutical companies are starting to do this sort of thing, I know it’s a dual purpose venture, but it’s not like I have a choice on which immunosuppressive drug I take. They have enough money fund well designed, and organized projects like this so they should be the ones who do it – besides, they know about the drugs they make, so it makes sense to me on several levels.

As a side note, don’t lick the sticky strip on the survey card they send you – it’s completely nasty!

Ha! UPMC now has free public WiFi from the clinic, so I can play around on the internet while waiting here in clinic. Yippee! As if I don’t spend enough time on the computer and/or the internet already they have to go and be enablers. Meh. It doesn’t really bother me. hehehe

I’m just waiting to see the docs now. I had breakfast, got poked and the like – now I get to sit and wait to see the docs and get the results from the CT that I had last Wednesday. Then, just when I get off my butt here I am rewarded with a 3.5 hour drive home. Hooray!

Somebody remind to bring my CD Key for Halo the next time I come – having the disk and no key doesn’t do any good at all.

::Edit ::

So it’s all good news! My artery is still doing well, and the CT shows no further narrowing – and I don’t have to go back to clinic for 4 months!

w00t! w00t!]]>