389 days later, and lots of changes

artery narrowingI went down to Pittsburgh last night for my Annual clinic appointment today, and I had lots of good news and changes.

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….

Ever wonder how much a transplant will cost you?

I generally don’t ( read: try not to) get too worked up over things that are intrinsically outside of my control. There are of course, times when that is impossible – this is not really one of those times.

As I get ready to complete my taxes again this year, I shuffled through some of my expenses and decided to take a look at what I spent this year on my transplant. I guess, more accurately it would be what I didn’t (thank God!) have to spend. Luckily I have a very generous employer and an excellent benefit package, so my out of pocket was tolerable. The first three months post transplant including the procedure itself, cost more than $270,000.00. I’m not going to give exact numbers, but good Lord! That is a lot of money, but admittedly I thought it would be more. I haven’t completely figured out our personal expenses yet, but for those first three months, all things considered I would say it’s likely in the ballpark of $5,000.00 +/-. That’s a lot of money, especially when you have two kids to raise – regardless of where you live.

As I have said before, we are blessed and very lucky to have the family, friends and colleagues that we/I do – there is no way I could have done this without all of them. Their support, help and donations made it possible for us to make it through a very trying 3 months.

So what now? I can expect to pay out probably $1,000 – $2,000 annually just in relation to my transplant for medication, clinic appointments, travel, lodging, etc…. None of which includes anything that I have to pay for in regards to the rest of my family. For those who have never had to deal with this kind of expense, and think the American Health Care system isn’t broken, I would suggest you need to think again.

Any way. I’m not going to hop on a soapbox to rant and rave about the rising costs of health care or how out of control big pharma is; I simply thought it all was very interesting and very left out of a lot of discussions. I know, I know, there isn’t a price tag on my life and the positive impact (usually) I have on my family, but expenses should be a topic of discussion when considering the well being of a family.

After all of that, I think I will just say…. thank you.

2 Fridays; 2 trips; too much fun….

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.

Happy birthday to my liver!

Today is the day, it has been a year since my transplant; well, a year in something like 6 hours and change. Over the last year my life has seen (hopefully) the greatest amount of change in my 35 years of existence. I have gone from being sick, with an uncertain future to being almost 100% normal and healthy. I say almost only because of the lingering issue with my Hepatic Artery, and my energy levels not seeming to return as I would like.

What is gone? The uncertainty. A year ago I was wondering if I would live to see my kids graduate from High School or even College, to having a glaringly more positive outlook on what is to come. It’s more than that though, it’s an attitude change. If you haven’t read the article I linked to from Michael J Fox, you should; it has a lot to do with how I look at things these days.

Without getting way too existential, I’m not the same dude I was a year ago. And I am happy that this change has occurred. Whether it’s something that most folks have noticed or not, I feel like the 800 lb Gorilla has taken a long walk off a short pier. Good riddance.

In the next couple weeks I will be heading back to Pittsburgh for my annual check up. Unfortunately this includes a Liver Biopsy. Not exactly how I would normal opt to spend a Friday. I will also get an Ultrasound to checkup afterwards, and then a CT Angiogram at the end of the day. This is all check the health of my new liver as well as the state of my Hepatic Artery and how much flow is going through.

The following Friday will have me traveling back to Pittsburgh for a standard clinic visit. That’s a whole lot of traveling back and forth to Pittsburgh, which will hopefully not result in any more trips. Since I ditched the Jetta, and the Bronco is now my major source of transportation; it makes it a little more sticky to constantly make that drive. With the Bronco only getting 11 or 12 mpg, it isn’t going to make the 3.5 hour trip if I can help it.

Before I babble any more, it was a good birthday. I spent the day with my Mom, Brother, his wife and Donovan at OMSI here in Portland and took a tour of the USS Blueback. Being on a submarine was cool.

My new home; well online anyway….

For various reasons I have decided to move my blog to wordpress.com rather than hosting it myself. The deliverMyLiver.com domain now points here on WordPress.com, so unfortunately anyone who is a registered member will now have to sign up on wordpress.com to comment and receive updates. I apologize for the pain in the jar of that, but ultimately this is a better home for my Liver transplant blog.

I have also decided that I’m not going to be posting anything on Jaiku or Twitter about my transplant, and the whole keeping track of how often I think about it or take meds, etc… The idea sounded better than actually having to do it, and right now it seems like it would be just another thing that I would probably only half remember to do.