Deliver My Liver

A program coming from New York will allow the city to dispatch a special Organ Recovery Ambulance to secure the viability of the recently deceased while they obtain permission to have the organs donated. In an article on USA Today, the program is described as way to buy time to get to potential donors (22,000 annually in the US) who die outside of a hospital and are ineligible for organ donation. The basic scope would be:

1. Inject heparin, a blood thinner, into the IV started by paramedics, to prevent blood clots.

2. Continue ventilating the patient through the endotracheal tube inserted by paramedics into the patient’s trachea, to keep the organs oxygenated.

3. Continue chest compressions, using an automated compression device that squeezes the chest, to keep blood pumping through the potential donor and perfusing the organs.

4. Transport the body to the hospital, where further preservation measures would be taken as the family is consulted about the deceased’s wishes regarding organ donation.

Source: Bellevue Hospital, New York City Fire Department and New York Organ Donor Network

RORA is still in the proposal phase though, and could potentially begin next month some time if all goes well. I know the big issue here is patient rights and family consent, but I view it as a measure to ensure life - not really a medical procedure in the literal sense. I know, I’m biased.

There are a lot of issues revolving around whether or not the deceased person is a signed donor or not - because if they are, then the RORA team would be acting in accordance with their wishes as a listed donor. With only 1% +/- of people who die at hospitals being eligible, and 99,134 listed recipients people need all the help they can get. For more information there is a Q&A attached to the article.

I don’t usually use my blog for a soapbox, but I have to say that some of the comments for that article include several of the most ignorant statements I have ever read involving organ donation and transplanting. One comment even goes so far as to say not to sign the organ donation card because doctors will let you die. That’s the kind of stuff that I love about the internet. Well in the case of that one we know the brain is not a viable organ….

This is an excellent program, and will inevitably save lives - I don’t know how anyone who thinks about it logically could have a problem with that.

• Waiting list candidates 99,134 as of 05/01/2008
  
• Transplants January - January 2008 2,197 as of 04/25/2008
  
• Donors January - January 2008 1,132 as of 04/25/2008 Based on Organ Procurement and Transplantation Network (OPTN) data

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 started to write this post and stopped three times now. I just don’t know what to say. The whole story is a collection of tragic endings on almost all fronts.

I can’t imagine how this could have ended any better, or different - but I just have to say that my heart goes out to all of the family members; and I pray this never happens again….. This really hit me pretty hard. Partly because I cannot even begin to fathom life without either of my boys. In part also because this is one subject that was never discussed, never hinted at, or even came to mind. Not once during my whole process of being sick, getting listed then eventually transplanted.

I would much rather be sharing something more uplifting; a story of amazing success and grace. But stories like this need to be told too. People who are being listed and told they need a transplant of any kind need to know the risks; regardless of how remote. Knowing this would have made little difference in my decision, so I know some could argue, what difference would it make to have known it? Honestly? None.

What I can say: mentally, I was completed unprepared for what lay ahead for me after I returned to the floor from ICU. I had no idea what to expect, and it was horrible for the first week or so. I had only what the doctors were telling to gauge what was happening. They kept telling me I was doing great, but I was in a lot of pain - so I didn’t feel great. Where am I going with all of this? Simple. Had I known (you could argue… duh! what else would you be in after having a liver transplant?) what it was really like afterwards, I would have been more mentally fortified to deal with it.

Which is ultimately what made me decide to write this blog.

I don’t usually double post from either of my blogs, but this fits both places - so here goes:

Upon recommendation of one of the blogs I usually read; Presentation Zen, I took a look at Jill Bolte Taylor’s TED presentation: My Stroke of Insight. The presentation itself was simply fascinating, the fact that she had such clarity of thought during what I could only expect to be a terrifying experience in the best of cases, is utterly amazing. Couples with her story telling ability, the whole package turns into a fascinating mix of spirituality, science and metaphysical philosophy.

What really struck home for me was during the portion where she spoke of her experience of being cut off from the analytic engine in the left hemisphere and the feeling of enormity that her body succumbed to. This is a feeling I know all too well. While my right brain excursion was not stroke induced, rather an artificial side effect of a mixture of Morphine and Oxycontin shortly after I was moved from the ICU to the transplant ward after my Liver Transplant.

I was placed in a rather small room at the end of the hall after coming upstairs due to the fact that I am resistant to antibiotics or VRE. It was shortly after this that it all went to hell in a hand basket. I became extremely anxious, agitated and confused. I was in pain, disoriented, dillusional and feeling very much like an observer to what was happening to me. I remember feeling like my hands were the size of basketballs and that the Pulse Ox on my finger was enormous and it felt heavy and hard to hold my hand up with it on there. During this whole time I had no idea what the hell was going on, and as my memory serves me I was scared as hell. I had just undergone a Liver Transplant 4 days prior, and no for some unknown reason I was freaking right the hell out, and I thought I was going off my nut. I had no conception of time during this time, just the very real sense that the room was getting smaller, with my head touching the wall behind me and my feet resting flat on the other wall. I would have to agree with Dr. Taylor in that this was “La la land.” The difference was I felt no euphoria; it was not fun.

What I find most interesting is the assertion she makes about the functions of the two hemispheres working independently of one another; the right side living in the now, and the left working in the past, and future working for us as the planner and filer of our experiences. The brain is a fascinating bit of biological mechanics, and if you’re up for a very different perspective on what having a stroke is like; watch this presentation.

This is the first time I have really thought about that day in the 1 year, 2 months and 15 days since my transplant, and if I were to be honest; I’m glad my left hemisphere started working right again.

This has been another interesting experience in the world of UPMC Doctors and procedures. Thursday night Litsa and I left to drive down to Pittsburgh, and as always we leave right around dinner time and I always wind up getting to eat to poo on the way, stopping across the street from the Prison in Marienville at the Red Apple, at least their little pies were fresh. The trip was made more adventurous by the fact that I think my immunosupression has made one of my root canals go all wonky, and that has been giving a more than small amount of pain too.

Before I ramble on too much, I was told I was staying the night here at UPMC, so we got the kids situated and everything lined up to come home on Saturday. Then Friday morning came along and while I was laying on the table and the Doctor decided it was best to not to balloon the artery simply because of the kink in it; which you can plainly see in the picture of my Hepatic Artery from the Angiogram. I talked with him about the risks of and of not having the Angioplasty, and even covered possibly putting in an arterial stent. The problem is that it’s the tight turn causing the flow issues, not a Stenosis, or scarring. So we are back to the waiting. I have to say though, this was an excellent Doctor - and he was very frank in our conversation; which is always preferred.

I will have a regular Utrasound(every other month), and just hang back and see what happens. This is good news and bad news I guess. The good news is there is good pressure and decent flow within the artery, so my numbers are steady and liver function in great. The bad news is that if the Artery occludes, I lose the liver. Naturally I was a bit drugged when we talked(why do all Doctors do this? Even when you come out of surgery or a procedure with heavy sedation…), so I didn’t get a chance to talk to him coherently about some other questions I have - but he emailed me the photo above so I think I will email him back:

•  Is here a reason why the artery wasn’t shortened during the transplant?
• Is vascular surgery an option?

There will probably be a couple more questions added to the list by the end of today when Litsa and I get home. All in all, I think it was a good visit, and I am happy with the general prognosis of “wait and watch”, but I’m not a huge fan of uncertainty where my life is involved….

I just heard from my coordinator the other day that the docs have ganged up on me and decided that I need to undergo another Angioplasty procedure to help the blood flow through my hepatic artery. Which is good and bad I guess. Good because it keeps me in my Liver, but bad because I have to go to Pittsburgh again, figure out what to do with the kids and have my wife truck me back - since they will not let me drive home after it. Of course, that’s all assuming I don’t have to spend the night.

There’s no fire to get it done, it’s more of a precautionary thing - but I’m not overly thrilled about it either. It’s not a terribly fun procedure, especially since I basically can’t move for 4 hours or so afterwards.

I 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….

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.

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.

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.