Falling on deaf ears

Greta Van Susteren mentions on her blog today how her colleague Catherine Herridge is thankful because her son is alive (after a liver transplant). I mentioned it on a prior blog (Wednesday Nov 15 @ 5:29 pm).
http://www.foxnews.com/story/0,2933,231520,00.html

I sent an email to Greta via the public email address. Unfortunately she didn't read it, pass it on or get it. I am sure she get's thousands of email messages a day so I can understand.

Too bad she didn't have something like Dell's customer advocate. He emailed me within hours of me mentioning them and the six calls I had into tech support. BTW I have a few more in. Things are progressing. I still have a laptop that is in the process of getting fixed (I need to replace the hard drive (and re install all the apps)) YUCK!, and a backup device that isn't playing nice with Backup Exec v 10.d. (That upgrade has become a pain in the ass for sure). Symantec, do you have a customer advocate, are you listening?

What lies ahead

A few years ago I set out to put my (selfish) life goals on paper. Unfortunately I can't find the paper I wrote them on. Pretty ironic.

I do remember a few of them.
1) Get published
Newspaper (photo(s) or article(s))
Book (book, manuscript or short/long story)
Movie (yes a movie)
2) Travel to every continent including Antarctica
3) i need to find my paper..........

I have been to two continents (or three) with five (or four) to go. I always though there were seven continents. But as all things change, there are seven theories on the number of continents from three to seven. Six and seven continents hold the most water. Three and four are probably people that like to argue against conventional wisdom.

Being published. I have. Last year I got the front cover above the fold of the Washington Observer-Reporter newspaper. I wasn't expecting it for sure. It was a nice Christmas present.

I have been floating so many idea for a book it's dumbfounding. Granted I am no John Grisham so I have to take the non traditional route to being published. Its okay by me. This blog may be one of a few stories that are getting the most attention in regards to getting published.
Once the blog is converted to book form then published it wouldn't take much to adopt it to a screenplay and made into a movie.

I know, it's pretty pretentious (?) to think my life could be made into a movie. But who says it has to be made by Ron Howard? Hmmm, Jack Black could play the part of me. LOL

I am looking at resources to get a book published. Of course, I have to find a stopping point to do it. Not in life, just in this current liver-donation-blood-disorder thing I have going on right now.

Houston, we have a problem

Well, I am sure I mentioned the lack of communication in the past in reference to dealing with UPMC. Here's a little more.
Apparently my wife got a call yesterday too. Not sure if it was before or after my own call, which was around 2:00pm.
The call she got was TOTALLY different then the call I got.
Her information was that my liver was 70% affected by this excess iron in my blood.
My information was that if treated, I will be just fine. BUT if not treated, then it could end up I too would need a liver transplant.
I spoke to a doctor, my wife spoke to a nurse but is a coordinator. BOTH very capable just in a different position in the circle. I have seen both of them and so has the original recipient.

NOW, if it is true that my liver is in BAAAADDDDD shape then I guess this will take a bit of a different turn. If my liver is in good or decent shape then of course it's not a dire of a situation.

Back to Houston. A good trip going bad. Great communication results in a wonderful result.
(Referencing the Apollo 13 space trip).

Here in Pittsburgh, bad situation being muddied up because of bad communication. The results are yet to be seen.

I'm not dying

Contrary to some belief, I am not dying.
I haven't lost 70 percent of my liver.
I am doing just fine. All I need to do is eat better, exercise a bit and give some blood to bring the iron levels down to a safe level.

I got the second call

Waiting for a third.

I am not a viable donor.

I do have a blood disorder.

It can result in my own liver failure, heart disease, pancreas and diabetes.

It is called Hemochromotosis.

I got the call

I have some news, but am waiting for a follow up phone call that should come this afternoon before I can let you all know.

More facts and figures

Here are some stats from www.ustransplant.org

Center: University of Pittsburgh Medical Center (PAPT)
Organ: LI: Liver

Center Activity (01/01/2005-12/31/2005)	Center Data
Deceased donor transplants (n=number)	186
Living donor transplants (n)	36
On waitlist at start (n)	342
On waitlist at end (n)	338
Number of new patient registrations (n)	290
Transplant rate among waitlist patients	0.67
Transplant rate (from deceased donors) among waitlist patients	0.56
Alive on waitlist one year after listing (%)	22
Died on waitlist without transplant within one year after listing (%)	8.2

These are some sobering figures for me. Granted they are for the recipient whereas I am the donor.

One of the items that came up repeatedly during my psych visit was the very real possiblity for depression after I undergo the liver donation. Since this is an elective surgery for me, I will receive ZERO health benefits. On the contrary, my health will be in jeapordy. Long term issues have not been fully studied. Psychologically, financially, emotionally. Living donors currently become a bit of an after thought. If the recipient dies, and the numbers support that reality, then it will be all for naught.

I am trying to make sure that doesn't happen to me and if I can provide a path of information to others, they too will be able to make a better decision that will affect them the rest of their lives.8.2

More resources

I ran across this site from Mount Sinai regarding liver donation.
http://www.mssm.edu/rmti/liverdonor.shtml

It sounds like UPMC does their donor evaluations differently than all other transplant clinics. UPMC gets insurance approval then runs you (me) through the three days at one time. Most all other clinics you get the blood tests then wait for the results. If you pass then you go to the second day which is usually pulmonary, EKG, CT and X-ray. If you pass those then it's off to the liver biopsy. If you pass that and the psych and social then you are deemed viable. For UPMC, it's an all or nothing trip through the system. MSSM states an eight week process. UPMC does it in less than two. Depending on scheduling issues.

Out of the box

In a parallel comment line of my comments this weekend. I found this magazine at a big bookstore last night. http://jpgmag.com/ it is definitely not the usual mag/rag. Very little advertising (front and back pages) and a few sponsored features inside. It is a magazine about photos. Images. From the readers. Check out the site and see if the magazine is at the big box book store near you.

Doctor, it hurts when I do this....

Then stop doing that.

I am doing very well. On multiple levels.
My biopsy site is doing well except where the doctor tried to scratch my back from my stomach. So that is sore and only when I bend over. No problems picking things up, but I am aware to pick items up properly, you know, bend at the knees.

Mentally and emotionally.
There was so much stress on me with the series of tests last week, yesterday was the best I have felt emotionally and physically for several months. Lets see if I can keep on a roll.

Time waits for no man

We could hear as early as today or as late as Wednesday on if I am a suitable live liver donor.

As soon as I find out, I will let you all know here and in a mass email. I'm such a warm and fuzzy person that way......

What's in it for me?

PLEASE, read this article.
Leave a comment here on what you thought. Good, bad or unmoved.

http://www.kidney.org/transplantation/donorFamilies/newsDonorSister.cfm

400 hits, 94 thousand lives

I hit 400 views sometime today.
Thank you.

I was actually thinking if everyone sent the link to several people they know we could have been at about 1000 by today.

I could use some comments too.


Are you an organ donor? Have you told your family about it?

Waiting list candidates as of today 8:34pm
All	94,149
Kidney	68,950
Pancreas	1,746
Kidney/Pancreas	2,414
Liver	17,086
Intestine	245
Heart	2,841
Lung	2,880
Heart/Lung	141
All candidates will be less than the sum due to candidates waiting for multiple organs

Transplants performed January - August 2006
Total	19,719
Deceased Donor	15,096
Living Donor	4,623
Based on OPTN data as of 11/10/2006

Donors recovered January - August 2006
Total	10,026
Deceased Donor	5,406
Living Donor	4,620
Based on OPTN data as of 11/10/2006

Get out of your routine and take control

If I have mentioned this before. I will mention it again. If you haven't read it from me, it's new to you. Go here http://www.dooce.com/

Heather is the creative talent behind that site and her......view on life........ is something to behold.
In my mind she has incredible writing style. When I need a new view on something or an escape form my own local reality I head to dooce and get a different perspective. Heather is raw and honest. What more do you need?

Too many of us get into a grind that becomes just that. A GRIND. Wearing us down as we shed off parts. Get out of that routine. Try something just a little different or VERY different. Try a new sport. Learn how to knit. Write a diary for a week of EVERYTHING you see, say and do. Go back and read it. Put it away then a month later do it again.

Compare them. What do you see? A pattern.....a stagnation.....a GRIND.

You may not have noticed, but when I met with the UPMC shrink, she revealed a few things that are resonating with me. I didn't say anything else about that meeting.

Granted it's one persons opinion. But damn it made sense.

From her interview of me, I have two.....issues......?

ADD, yes ADD and a Control issue.

Who'd a thunk it.

No, I am not a risk to civilization and I don't even need medication. She actually called me "boring". But when she listened to my verbal ramblings and offered reasons, things clicked. I had an understanding of certain things in my life.

I didn't necessarily like what she said. There are labels for people with ADD and those that are controllers. But is still made sense.

I might get a second opinion.........

Night and the day after

7:30 pm I had gas so bad I ran my poor wife off the second floor. I was BAD!

8:00 pm I decided it was time for bed. We had already eaten dinner and I am tired. The Tylenol has worn off but I am feeling good.

<>

The Day After

11/18/06

early am I’m not sure what time it is. Probably close to 4:00 am. But it could be 11:00 pm. I won’t look at the clock. I could probably get up. I feel rested, but if it’s too early then this isn’t the sleep wake cycle that I want to be on.

The soreness at the biopsy spot has woken me up a few times during the night as I turn over in my sleep. It’s down to an ache. More like a bruise.

I try to go back to sleep.

8:00 am My wife’s alarm goes off at 8:00 am. I guess it’s time to get up. She falls back to sleep. I get up to go to the bathroom.

I was able to get out of bed fine. I have many thoughts of the surgery resonating through my mind. Mostly the recovery.

Mary Grace (the hospital Psych) was very concerned about post surgery depression for me, as a donor. She was also very concerned about at home care after the surgery.

My wife has been given approval to take time off after the surgery. But a schedule hasn’t actually been thought about. For me and my work the months of November and December are our slowest. There are few installations or travel during the holidays. But for my wife, this is their busiest time of the year. She has job security. I do not.

Once my test results are in (from these past three days) and UPMC determines that I am a viable donor. I will approach the CEO of the company I work for to see what my options are. Of course, I would like to be able to keep my salary as I undergo the surgery and recovery. Much of my work can actually be done remotely. They could have equipment shipped to my house and I could do what I need to do then ship it on to the customer. I won’t be able to travel for some time which is a part of my job at times.

If they won’t keep me, I am prepared to leave – on the spot.

8:30 am I decided it was time to pull the band aid off my pale white hairy Buddha belly. (There’s a visual for you).

I started to cut the band aid off with a small pair of scissors and wasn’t very successful. So I grabbed a corner of the band aid and RIPPED it off.

Ohhhhh, that hurt!!!!!

I have quite a bit of hair on my body. So yanking a band aid is like a micro waxing.

I see two spots that are scabbed over. One looks like where the two lidocain injections went in and the other from the biopsy needle. They are small with the biopsy spot the largest.

I was told they took out a pencil lead sized section of my liver. I don’t know if it was a #2 a .03, .05, .07 mm either.

As I feel the area around the spot. The sorest part is were the doctors finger was pressing very hard into my stomach.

Not the gift I wanted to give

7:30 pm I had gas so bad I ran my poor wife off the second floor. I was BAD!

8:00 pm I decided it was time for bed. We had already eaten dinner and I am tired. The Tylenol has worn off but I am feeling good.

A few small details to add

7:30 pm After dinner and the events of the day....they must have taken a toll on my innards. I had gas soooo bad, I ran my poor wife off the second floor of our house. Not sure if it was anything from the hospital since the only thing I actually received was the contrast via IV for my CT on Thursday.


8:00 pm The day has taken it's toll. I am heading to bed. Good night.

Discharge and home

11:30 am Pressing on my belly, it’s sore and tender. When not pressing on it, it feels achy and like I am very hungry. Then again, I AM hungry. Two pieces of toast and orange juice didn’t exactly fill my empty stomach. Especially mine.

11:35 am As I lay here, thinking about the surgery to come. I realize no one has thought to ask me what my pain tolerance is. Mine is pretty low and that concerns me.

12:00 noon I decided to live a little and headed off to the bathroom. It’s the first time I have actually sat up in four hours. Everything came out fine. I can feel a bit more pain as I move around sitting up, moving and such. But it’s definitely not a problem.

These hospital robes suck.

12:10 pm I have dubbed the guy next to me listening to infomercials as Mr. Angry. He is not in great health and he is also in for a biopsy. Unfortunately his blood work isn’t within tolerances so they won’t perform the biopsy. Now he has to wait to see if they can stabilize the blood but he needs food to do that and he can’t have food before a biopsy. It’s a vicious circle.

12:30 pm I am ready to go. Hungry for sure. I am also getting twinges of pain. Not debilitating but noticeable.

1:00 pm The nurse that has been taking care of me is kicking me out. She checks my blood pressure and says it’s time to get dressed. After I dress she goes over the discharge papers with me and noticed that the consent form is missing so she got another one. I signed it and noticed something that most people probably don’t see or care about.

But I do!

On the consent form was a photo release. I understand this type of a release. I have used them too. But after my go around with the UPMC media relations department (specifically Maureen McGaffin) and them denying my request. Well, I was pretty pissed off about this. Especially after I had to sign it.

We bugged out of UPMC and headed to Red Robin for lunch.

2:30 pm Lunch is over and we are heading back home. I can begin feeling more intense pain but it’s not really bad. We’ll stop and get some Tylenol.

3:00 pm I took 2 Extra Strength Tylenol.

Post procedure

9:27 am I was rolled down to 7 West by my original escort and I tried to convince him to head to the McDonalds drive thru for breakfast. He wasn’t going for it. I was left at the nurses station. We bid our good byes.

One nurse said she will get with me soon. I told her I wasn’t gong anywhere. “I will be here til Friday” “And don’t forget to tip your waitress”. I got several laughs from that one.

I’m on a roll.

9:43 am The lidocain feels like it’s wearing off. I am sure it isn’t but I feel that way.

9:57 am My hunger pains and the biopsy site aren’t exactly helping each other out.

I am bored laying on my back and it scares me to cough. I still have a light cough.

10:15 am I can elevate my head. Only three hours to go.

10:30 am My wife heads to the cafeteria to get me some scrambled eggs, toast, home fires and some orange juice.

She comes back with toast and orange juice. The cafeteria was closing and preparing for lunch.

11:18 am I guess my lidocain isn’t wearing off as fast as I expected. It is wearing off. But slower. I can feel the site getting bigger. Or at least the discomfort.

I'm going in

8:40 am Wheeled to surgical holding, 4^th floor by Jarrell (sp?).As we chatted and made small talk we laughed and enjoyed the ride. I was rolled through the public hallways, and I noticed that few people made eye contact when you are in a gown and on a bed.

The 4^th floor holding room has room for 5 beds, dimmed lights and faux wood flooring. Again was the always present hum of the fan. I was placed in the far corner of the room in slot 3. It was a busy place. There were three in the room when I arrived and in a matter of five minutes all the others were gone and a new patient had arrived.

8:50 am My hands are cold and I am getting more nervous as I sit here longer………….waiting.

It’s a different world down here. Life moves at a different pace. I can feel it. I can see it. Maybe it’s knowing what’s coming up next. Or. Perhaps it’s not knowing.

8:55 am A doctor came out. She wore dark blue scrubs. He spoke clearly with a medium accent that placed her heritage from Russia or that region. She checked my ID then told me my chart went back to 7West. She’ll track it down and get back to me.

“I’ll be here through Friday” I replied.

9:00 am My chart made it down to me in holding.

I’m sitting up in my bed and my butt is almost numb. I can’t wait to spend a week or two in one of these things. Yuck!

Although I probably shouldn’t have, I realize I need to get a different deodorant. This flavor isn’t working for me.

9:05 am They come for me.

9:10 am The room I am wheeled into is across from the holding room on the 4^th floor. It’s a typical hospital room but four doctors are in it. They are all busy, prepping equipment looking t the charts and explaining to me what will happen during the biopsy.

I am told it takes about 15 minutes to setup for a procedure that takes only a few minutes.

My robe is pulled up over my stomach.

The primary doctor is a young man very professional.

He uses the ultrasound to do an initial liver search. I am asked to breathe deeply and hold three times.

After I have been ultra-sounded another doctor cleans my stomach with alcohol and explains that it will be cold and have an odor. It takes her a while, I have enough to clean. She then wipes it with something else.

Both doctors lay sterile towels on all four sides of my stomach. Then they use a sterile cover on the ultrasound unit to probe once again. The doctor presses his finger to make a spot.

“You will feel a pinch” As the first lidocain shot is pressed into the spot just below my sternum.

The second lidocain shot is placed by the ultrasound and is deeper.

I can feel the needle press deeper into my stomach. It’s tight. Not necessarily painful but definitely not very comfortable. Okay, lied. I hurt. The doctor’s finger is pressing in as well. That I can feel.

"Take a deep breath and hold it."

“You will hear a click” I hear, as the biopsy instrument is pressed to my stomach.

CLICK and it’s done.

I didn’t feel the spring powered biopsy needle go in an out. But the docs finger needs to go!

They put a bandage on my belly and instruct me to stay lying on my back very still for the next hour. Do not lift my head do not move my lower body.

I am done with the procedure at 9:22 according to their clock