Sad news

For those of you who have sometimes followed Mark's sporadic blogging, I write to let you know that he won't be posting anymore.
Mark died on Thursday, June 18 from complications caused by his liver disease. He was 53 years old. He was only recently listed on the transplant list at Tufts in Boston and we were hopeful that his luck would change for the better.
His death was totally unexpected as he hadn't been any sicker than usual - but a blocked bile duct caused sepsis, which eventually led to multiple organ failure.
He has left a hole in my life and in my heart - and I will always be grateful for the time we did have together.
Dana

home again, home again....

We were in to see them Dr Lee and Claire between patients so that we could hit the road early - as a result we were able to leave Boston at 2p rather than at 5p -

All in all we both rated the 3 days as a 7-8 on a scale of 1-10 with 10 being the best. we didn't learn a lot of new stuff, but it seems that the tests are all ok - the dizziness and falling seems to be related to just a drop in blood pressure when he stands up, but nothing they can pinpoint like his heart or anything neurological....so that's good and bad, i guess. He just has to be more patient and wait a minute or two after he gets up before he starts walking around....

I’m sure mark will write tomorrow or Friday - actually, i expect he'll probably sleep all day tomorrow!

Dana

Day 2

Hi all --- day 2 finished up about 130 again. They did manage to squeeze in a cardio appt. But tomorrow they've also added a neuro appt @ 8a, so we'll have to come back to the room and nap between 11-2 ("free" time) because it'll be a 3 hr drive home!

So today he started with the CT scans of the chest and abdomen. Nobody called so we're assuming things haven't changed since the last ones and that all is ok on that front. we saw the cardio doc because of the falling - it apparently is not his heart (which we pretty much knew anyway), but they can't find a reason other than when he stands up quickly his blood pressure drops and he gets dizzy and falls. Lots of people have this problem, me included, just not to the extent that mark does! tomorrow we'll tell the same stuff to the neuro doc who will do his routine with mark holding out his hands, tracking eye movement, etc. and I’ll bet that he won't come up with anything either...which I guess is both good and bad.

a good many of the people we saw today were east Indian...we've been getting business cards so we'll have everyone's names...but I know that Mark is getting tired and frustrated because he's getting irritated having to repeat the same things over and over to each doc. They all ask the same questions and they all get the same answers!

So he's been up in the room sleeping - I came down to the lobby so I could finally get wireless access and get some work done! Not sure what we're doing for dinner tonight - last night was seafood at legal seafood and I had a steak to die for....but I’m not sure either of us is up to much tonight. And there's nothing in walk able distance for him....anyway, it's snowing here today so we wouldn't want to walk around anyway!

That’s the nutshell version - no surprises, no bad news, just lots and lots of tests and talking!

Take care,
Dana

Day 1

Hi --- not really much news to report but we got through day 1....it was a really long day for mark and he was pooped when we finished up about 1 or 130...came back to the hotel and he slept for a couple of hours! 'course neither of us slept very well on Sunday night because he had forgotten his sleeping pills!

So today he had an ultrasound and a pulmonary function test. Then we saw the pulmonologist and Hannah Lee (the transplant doc) again. Pulmonary gives him a relatively clean bill of health - his inhale/exhale volume (for lack of a better description) was fine - then we sat down with Hannah and Claire (the phys asst) on the fly. Mark's been falling a lot again and I wanted to make sure that someone saw him today....we did lots of talking and then they had blood drawn and we'll find out about that tomorrow i guess. We measure the severity of his falls by blood and broken bones and so far he has neither! :-) lots of bruises and a slightly chipped tooth but no blood.....he is careful tho, so don't worry too much about this - he doesn't drive when he feels like this and he's fairly careful about walking around in the house - and I pester him about standing still until he feels sure that he won't fall - purely selfish on my part since I hate having to break his fall or get him off the floor! :-) [and I say this jokingly]

Tuesday is a chest ct scan and I think a stress test - can't remember! And if you don't get this email until Tuesday it's because we happen to be on the 2 floors of the hotel experiencing network issues! So I’ll drag my laptop to the hospital tomorrow so I can get some work done while I’m sitting in waiting rooms.

More later -

Dana

PS - and how about that winning catch by former buckeye Santonio Holmes! We were actually rooting for the cardinals but what a super bowl debut for him!

back to Tufts

well, I'm headed back to Tufts for preliminary tests on whether or not they will accept me in the program. While daunting, I've noticed that all the tests they want to do during those 3 days are all tests I've had before. Interesting to see if they get any additional insight, or if just a waste of my time...

It's not easy being green...[actually, yellow]

I've been jaundiced for so long I, and most others don't even notice, unless you bring me into context by putting me next to someone really healthy and clear skinned. I keep track of it by watching the color of my eye-whites.

It all kinda goes with the general expression "but you don't look sick."

I'm a big guy....normally 6'2," about 225 lbs. It wasn't until my weight jumped to almost 320 lbs. that people noticed. I was told it was the drugs/steroids, water weight, etc. Now I'm back to 260 lbs. and feeling more normal. Once I can exercise again I will be happier, and presumably, lighter.

But it's the things people don't see that make this so hard: the up and downs of my weight making me have 3 sets of clothes, the poor healing, the depression, the impotence, etc. Doctors talk about how hard the post-surgery recovery will be, but I think this can't be any harder than what I'm going through now. Eventually we will see who is right.

At Last:-- Communication!

Got a call from Tufts yesterday...all unofficial, of course...saying I have cleared all the preliminary hurdles and that they'll soon call to begin the transplant protocol of tests,
etc.

At least it's a half-step forward.