Thank God I'm Home!

Hi All,

I know my Lelia sent out a short note about me being back at UVA last week and I wanted to write to let everyone know I am home as of tonight at 6:30. I know a lot of you are interested in the "sordid details" of my stays in the hospital so I will take this opportunity to try to explain my latest stay.

First of all let me say that before my appointment for clinic on 2/26 I was gaining weight, strength and stamina, my color was improving and my appetite was insatiable. I felt as though things were finally improving and a major milestone had been surpassed.

So, on my way home from that clinic I received a call from my attending surgeon (Dr. Kumar) telling me that I have an arterial collapse in one of the main arteries feeding blood to my liver. The collapse was picked up by a CT scan they ran that day. I knew when I answered and heard the doc's voice that he probably was not calling to say hi so Lelia and I both had a "oh no" moment. He also voiced concern about my continued anemia and the fact that it remained a mystery to the entire team. He wanted me back to UVA asap and that happened to be Monday March 11, 2010.

When I arrived at UVA on Monday I was scheduled for an angiogram and possible angioplasty or stint in the questionable artery. I went straight to Interventional Radiology and my ole' buddies Dr. Saad and Dr. Enscore. These are the two docs that have done some the other memorable procedures like lateral and bi-lateral vein-o-gram and my first two angiograms. Dr. Saad is a no nonsense guy, and I like that, but as far as I knew at this time I was going in for the angiogram, balloon the artery and send me on my way. Well you can forget that.Saad comes into the prep area and explains that from the CT scan (I had on Friday) he can see that the collapsed section is probably too long to balloon and too long to stint so more than likely he will only be on a "fact finding" mission that will entail using some dye to highlight the collapsed area to see just how much damage there was. There was a slight chance that they would be able to balloon or stint but he felt, even before the procedure, that it would not be doable. He called the condition an advanced artery disease and I called it a little scary. The procedure went off without a hitch, I was sedated (not totally unconscious) but I really didn't feel much after the numbing and off we went into "procedure land". No balloon or stint was able to be used or placed but the angiogram did give a more clear picture of the damage that had been done to the artery. I knew I would be staying the night in the hospital so after the procedure I was taken to Five West (the transplant floor) and got a great reception from everyone. The entire staff of Five West truly made me feel comfortable and almost like being at home.

So now I have two outstanding issues that need to be resolved;

1.      A collapsed section of diseased artery that cannot be ballooned or stinted

2.      An auto-immune hemolytic anemia that cannot be explained

"That ain't no mountain for a climber"

So for the last eight days I have been poked, stuck, IV dripped and infused while my team tries to come to some conclusion to the above mentioned mysteries. I say mysteries because if you have been following my plight you know that I have been battling anemia since my first transplant so that has been a mystery for awhile. The artery is a mystery because my team had to bring in a Hematologist and three Kidney/rejection specialists to review my condition and they are all baffled.

Explanation; The section of artery that was part of my second donor liver was surgically attached to my artery during the second transplant. The only part of the artery that is collapsed is the section that was attached to the donor liver. This condition seems to be caused by an anti-body in the lining of that one section of artery (approx. 1"dia x 4" length). No doc on my team has seen this type of "rejection" of just a section of artery so they are studying medical journals to try to find some documentation. I still have my portal vein that is the main supplier of blood and the liver is so adaptive that when the artery collapsed, signals were sent out for more blood supply and some "collateral arteries" have attached themselves and are helping the liver remain stable. My liver numbers are good so for now they are only going to observe me thru daily blood work and I have been introduced to a therapeutic level of Coumadin (blood thinner) to keep everything flowing like it should. The team has seen patients do just fine while only having blood supply from the portal vein. They are hoping for more collateral arterial growth to help maintain good blood supply.

For the present time we are only going to address this anemia that continues to drive my blood counts down making it necessary for me to get transfusions. I will be receiving three additional treatments of an immune-globulin (IVIG) here in Bristol at the Jackie Leonard Infusion Center (many thanks to Frank and Jackie Leonard, what an awesome facility for Bristol!!) and will follow-up with my Hematologist at UVA on April 2, 2010. The IVIG is meant to suppress any anti-bodies that are causing my anemia but this too is a "test" and there is no guarantee it will work. IVIG has been used for this condition with success in the past and it is the hope of the team that it will work again.

Let me assure you all that I am doing much better and feeling better every day. I still have some hurdles to cross but with the love and support of friends like you and the prayers that continue to be answered for me daily I will get through this. On the positive side of things I am back playing music, we have rehearsed as Wires and Wood twice and I have had a couple other "pickin' sessions". I can tell you it's a lot like riding a bike I can still do it but I need to oil my chain a little. We are getting ready for the party/festival season and hope to play some shows this year. Lelia and I are looking forward to a great spring and summer and hopefully will get back to the golf course soon. Keep us in your thought s and prayers as we continue to fine tune my body parts and we look forward to seeing you ALL soon.

Kindest Regards,

With love for you all,

Mark