Friday, November 17, 2006

I got connection

Liver biopsy on the last day

4:00 am wake up

5:00 am pick up recipient and head to UPMC Montefiore.

5:45 am Arrive at MUH, there wasn’t any traffic and we made it in about 45 minutes.

5:54 am At MUH 7 West for my liver biopsy. There are a few people in the small waiting room. There is just enough lighting to read comfortably but nothing really bright.

I’m really tired today. I feel like puking. My nervousness compounded by no food or drink probably doesn’t help. It’s pretty apparent that my mood is somber this morning. My wife keeps asking how I am.

.scared.

6:00 am I received my admission bracelet. They are plastic pre printed with my patient number name birthday and barcode. It’s nice and readable. Much nicer than those of years past.

6:30 I was called back to get prepped. Jia is my nurse. She gave me to robes and a pair of socks and said to change out of my clothes except for my skivvies. J I got smart this time and brought some shorts.

I look great in a hospital robe and neat no slip socks.

6:39 am Jia put the IV into my left hand. I had already had blood drawn form my right arm and it’s still bruised. My left arm had the IV from yesterday’s CT with contrast. Since I write with my right, I chose left for the IV. At least I had a choice.

7:00 am Waiting to be called to get my biopsy.

7:30 am Checked with Jia and since I won’t be called until about 8:30 they wife and recipient, decided to head to breakfast.

8:00 am I will be heading to biopsy in about 30 minutes so I thought I would try and post something.

There are 3 people here in the room built for four. I think all of us are having biopsies. I am in bed 1. Bed two is listening to infomercials. Bed three is talking to a family member and bed four is empty.

Liver biopsy day

4:00 am and nothing should be happening this freakin early.

We will leave for the hospital in a short bit, arrive by 6:00 am. I am the first scheduled biopsy this morning. Still, it's not scheduled until 9:00 am. I personally don't have any idea why they need me there at 6:00 if I am not doing anything until 9:00. GRRRRR

The biopsy will last approximately 5 minutes. Then I will be in post-op for four hours before they will release me. I am pretty sure I won't be able to post anything to the blog this morning. I wasn't able to for the past two days either. At least not "almost live" like I was trying to do.

When I am done, I will let you all kow what it was like.

Thursday, November 16, 2006

End of day TWO

The echo nurse was great. Sorry I didn’t get her name. She instructed me to lay on my left side facing away from the ultrasound monitor. She pulled out the lube and squirted it on my chest and the ultrasound unit. Of course, I made the requisite jokes and we both laughed pretty hard at them. I felt the unit press into my left rib cage and move different angles to get the best images of my heart. She did this in three different places. The first two aren’t so bad but the last was pretty uncomfortable. She presses really hard into the area just below my sternum and rolled it around to get better images.

4:00 pm My last appointment for the day is with the psychologist Mary Grace. We talked for about an hour and came up with some interesting things about me.

Day two in full

11/16/06 DAY 2

5:00 am Up ready for day two.

5:45 am P/U recipient and head into downtown. It can be a 35 minute drive with no traffic or a two hour drive with heavy traffic. We hit the beginning of the moderate traffic so it took us about 45 minutes. Pretty good actually.

6:50 am Dropped off the car with valet parking at UPMC Presby (Presbyterian) and walked to registration. When we got there, we were the only ones in the waiting area. I was done with registration in 5 minutes then sent to radiology. As we got to their desk, I asked her how she was and she said “fine” but I also asked her if she would tell us otherwise…..”no, probably not” and we all laughed.

7:00 am Waiting to get my EKG, CXR and CT.

7:05 The receptionist came around to the few of us in the radiology waiting area and updated us on our orders status. She didn’t have my orders, but will call the doctor soon if they don’t come through and she could get a verbal “order”.

7:30 am I am looking around in the radiology waiting room and there are about 25 people filling the pink cushioned, wood frame chairs.

I wonder who is in for what.

The receptionist walked over to say my orders have arrived and I am in the “box”. I should be called shortly.

7:41 am I’m tired. I’m hungry. I don’t have hunger pains or growling but I can feel it. I was stupid and I didn’t eat last night. I cooked for the kids, but not for me. Dumb.

Yesterday, during my social work appointment, Karen asked if I had experienced PTSD. I had to laugh. I silently thought of the joke “no I enjoy it” but I though it would be disrespectful. So I said “no.” I told her I volunteered to go to Saudi the first time and that I would go again, if I could deploy with the same group or similar group of guys I went with in 1991. I went with US Air Force Desert Warfare instructors from Silver Flag Alpha. They are the AF cadre that teaches desert warfare and desert survival to all air crews, security police and other law enforcement professionals. I would go again.

8:00 am A nurse, Stacey, called me in to consult room 1 to prep me for the EKG. We chatted for a while and laughed. We talked small talk about kids, ourselves and other stuff. She set an IV and checked it with some saline. I was told it might hurt a bit as she checked the IV. It didn’t or I don’t remember it hurting. Then she passed me off to Julie for my EKG.

8:05 am Stacey handed my order sheet to Julie and warned her I wanted to take pictures. Of course Julie was slightly alarmed, but I assured her that they are not of her. Still a bit apprehensive, she took me through the large waiting room and across the hall to a small simple room filled with a bed, an EKG machine and standard exam room desk, sink and bland lighting. I told Julie that I was documenting my experience as a live liver donor and the photos are of things I am going through.

8:10 am In the EKG room, across form the Radiology reception area, Julie hooked me up. I asked her to be gentle when removing the sticky pads. She said she’s never removed any hair. I was thankful. J

8:15 am After the VERY short EKG test, she removed the pads and I went back to the reception area.

My left arm is aching a bit from the IV. If I can’t handle this, tomorrow’s biopsy and eventual surgery are going to be GREAT! NOT

8:20 am Heading to CT. I lay down on the bed, rack, whatever. The nurse put a blanket over me and said to pull my pants down to my knees. (words guys always want to hear). Well, I thought that I need to stop going commando to these doctor appointments.

I complied, and then lay there staring at the ceiling tiles. There were six hoses hanging. A vacuum, two oxygen, an evacuation hose and nitrous oxide. There was another one, but I couldn’t read the label. The lights, sounds and smells. All hospital. Once you experience them they just don’t leave. I asked the nurse to take picture of me as I lay in the CT. She did, and I was thankful.

She went away and I heard a male voice on the intercom directing me to “breath”. As I did, the lights on the CT machine lit up, the machine came alive with a whirrrrr then a sideways smiley face with its mouth open blinked and lit up green. Then he said “hold” and the face with its mouth closed, puffed cheeks and all, lit up green. Numbers counted down, 5,4,3,2,1….. I repeated this several times as my body slid in and out of the CT.

There was a long wait. Several minutes.

The radiation tech came in. He explained how the contrast solution will affect my body.

Once it goes in, it will feel very warm, almost hot. It will also feel like I have to pee. There might also be a metallic taste in my mouth.

He hooked up the contrast and walked out. Blue lights were blinking on the IV/contrast machine. The intercom sounded “please put your left hand up on the machine, palm down.”

The whirring started. I heard the contrast pump kick on and saw the plunger push the clear fluid into the IV. My arm felt warm then my chest, thighs, hands and feet. I felt it in my butt, but I didn’t feel like I had to pee – as I was warned. Nor did I get the metallic taste. I do need to brush my teeth again though. J

Breathe in….hold….whirrrr…..I roll back in…..breath…..hold…..back out I go…..breath…..I wait. The CT grinds away. Whirrrrrrrrrr.

This activity takes about 5 minutes then I am done.

The nurse checks my orders and said she can take my IV out. I am told to drink lots of fluids to clear the contrast out of the kidneys. When she gets ready to pull the IV and tape off my arm, she apologizes in advance if she pulls my hair. I said it’s okay and then I asked “what if I like it?”

She was speechless.

I laughed as she stood there. Not sure what to say.

She turned around then back to remove the IV. She hesitated at pulling the tape off and the IV out. I know she had something going through her mind as she removed the tape and IV. I could see it in her eyes.

We walked out of CT1, turned right then left down the hall. I chided with her about my statement.

She was still a bit speechless as she opened the door to the radiology reception area.

I thanked her as I ended up back at 8:40 am.

9:40 am Head to Xray. I was asked to remove my clothes from the waits up and put on a hospital gown. The dressing room is very small. Four lockers and a small bench. Two lockers are open and another has a key in it. Since I have my camera, I chose the unit with a key. Luckily I only had to take my shirts off of else I would have to deal with the curse of the commando again. LOL

It’s warmer in this waiting area than in the radiology area. People come and others go off as our names are called.

9:49 am I got two chest x-rays. Front and side.

I mentioned that x-rays haven’t changed much in 100 years. I was corrected byt eh tech when she said they are digital now.

Coolness…I replied.

I sit back to wait for their short review of the x-rays. I can hear the machines humming behind me waiting for the next shot.

10:15 I made it Pulmonary at the Montefiore building. This is where most of the appointments are anyway but on floor 7. I am heading to the 6th floor. I don’t have cell access here. No blogging.

10:20 am I get called to the pulmonary test. I sat in a little box that looked like the cab of a snowcat. I asked where the treadmill was and she said they don’t do the treadmill for this test, but she hears it a lot.

I put my mouth on a device. Told to breath normally, then take a deeeeeeepppp breath very very quickly. Then exhale as fast as I can as much as I can until my lungs are empty. Then breathe in quickly. I do this several times. The first was okay. The second go ‘round I exhaled so much that I started to get tunnel vision and my auditory senses (my hearing) began to diminish. I started to lose the sounds of the fan humming in the room. It was a strange feeling. I mentioned that it felt like I was going to pass out. The nurse said no one has ever done that and that I wasn’t to be the first because the paperwork was too long. I was done by 10:30.

10:30 am we headed over to Children’s to find my wife and daughter. We went to the 4th floor since they were there yesterday. The nurse said they have not checked in today. So I decided it was lunch time and we would try to find them via phone call.

We walked to UPMC Presby again for the umpteenth time and headed to the 11th floor and cafeteria.

12:05 pm Done with lunch. All four of us ate together. We had burgers, salads Pittsburgh style (with fries mixed in) a banana, cottage cheese and a rootbeer.

My wife to my daughter home and we headed back to Montefiore to catch a shuttle to the Holiday Inn where the Comprehensive Heart Center is located. The shuttle takes about 5 minutes. You then walk through part of the garage then up one floor. We were here about an hour early. The building, like most hospitals, is a bit confusing. On the first floor there are three offices. A, B and C. I got lucky by picking “B” the first time.

12:35 pm I was handed some records and sent up to the “M” floor, room 60. M060. We arrived and no one was in the waiting room. I’m sure since it’s lunch time there isn’t much going on right now.

1:00 pm Things were stirring. People started to arrive a few left. But I haven’t been called yet.

1:23 I was called into get my 2D echo of my heart.

When it rains it pours pt. deux

5:00 am I am up and getting ready. I have a 6:45 and finish as 4:00. Long day, no food this morning.

My daughter had a shunt series CT yesterday and she is being called back for another one. Her drain tube might be cracked. Not sure if it's good or bad. Let you all know when I know.

When it rains it pours (again)

Wednesday, November 15, 2006

Wonderliver.com

I have a link to the wordpress site, but Mike created a .com site to help alleviate the traffic problem at wordpress. http://www.wonderliver.com He has some incredible photos on here.

.sigh.

A glimmer of light

I have received messages of encouragement from many of you. Thank you.
One today from Becky http://chopped-liver-blog.blogspot.com was to give me another possible link for getting media access to my appointments and my donation journey.

Earlier this year, Fox News National Homeland Security reporter Catherine Herridge was also a live liver donor to her son. She also had th procedures at UPMC. Here is a link to an article about it. http://www.foxnews.com/story/0,2933,198213,00.html

Becky also calmed me on my concern about my gallbladder being removed. In her words:
"The gallbladder? Heck, that's no sweat! (Okay, so a Krispy Kreme or a
Chipotle Burrito may not digest quite the same way ever again, but them's
the breaks.) In all seriousness, I haven't noticed any difference, for what
it's worth."

I do like a doughnut (or three) in the morning......SOMETIMES. :)

That's all folks

That's the end of day 1.

Tomorrow starts earlier and runs longer. Since I will be in and out of higher level tests. I hope to have the laptop running as we enter the area and leave it with one of my chaperones. Then as I return from each test I will post what's happening.

Thanks for letting me share this journey with you.

Like a stuck pig

12:00 noon BLOOD WORK. Mary did a good job while sticking me. She was in the process of filling 28 different vials for various tests and an extra just to be safe. I was done by 12:15.

According to my schedule, I might actually be done. Or very close to it. My Behavioral Health was moved to Thursday 4:00 pm from today.

Voice mail form the wife says she is still in the hospital waiting for a CT scan of the little one.

.sigh.

12:38 Anesthesia Dr. Boucek stopped by. He was easier to hear and VERY thorough as he explained the procedures of the day if I make it to surgery. He said 1 in 500 donors die after the procedure. Different numbers than 2 in 1500 I heard earlier. I asked him when number 499 was getting done. He didn’t laugh at that. But earlier during a basic checkup, he was checking my pulse, heart rate and lungs and I said I was getting more action from him than my wife. He did laugh at that.

12:59 pm Terri released me for the day. My 4:00 pm Beh Health was moved to Thursday. I reiterated my request fro media access. She said she would have liked to see it happen too. But when pressed (by me) she didn’t exactly say she would go to bat for me. As in press the surgeon to call Media Relations and make a request. I did end by saying “if necessary, I would beg and grovel”. She walked away as I heard I will have to remember that.

Click clack, click clack, click clack.

A summary of sorts

10:54 am Dr. R.L. Salis. Spanish accent. He talks quietly too. It doesn’t help with me being hard of hearing. Soft hands. Pleasant voice. He covered some complications and issues. Even after a Doctor or two, things are getting repetitive.

My cell card still isn’t working. Grrrr

11:15 am I took a walk to the waiting room “D.” WOW there are a lot of people here. 4-5 halls and 4 rooms to a hall. I assume all donors, recipients and families.

Dr. R.L. Salis knew about my media request and he thought it was taken care of. I’m not sure what taken care of means. Yes, no, hell no? What? I asked him to check with Terri then get back to me. Earlier I had told Terri I was angry….disappointed that I was denied media access. I don’t remember her reacting too far either way. She did say she though it was a good idea. Or at least it felt that way to me.

11:30 am A summary: Social=good, Terri=good, busy! She needs to lay off the caffeine. WOW a bundle of energy. Short legs, walks fast. J Dr. Shaw=Ran through the consent form pretty fast. Covered the percentages of death and why they happened. Dr. Salis=covered complications and benefits.of me being in “good health” (so far). But I haven’t had the big tests like EKG, CT, Pulmonary stress etc. Those will be tomorrow. Any of those tests could rule me out before I get to the biopsy.

11:51 am Got a call form a co-worker wishing me well.

The laps are next up for me so I am not to leave my home in room 3A. The laptop and wireless cell access is working now. Yeaaaaa. I can blog.

Catch up

I am sure you all realize that my post times and the post times…..(?) don’t match. Well, I wasn’t able to post live. I got behind. WAY behind. But I took good notes and I am posting the day. Chronologically speaking.

Tension, sounds and reboots, Oh My!

10:40 am I didn’t eat this morning and its taking hold. A bit of a tension headache is building in my neck. Probably from “the tension”, lack of sleep this week and no food this morning.

-beeps, intercom and shuffling of feet outside room 3A.

10:45 am Having issues with the laptop. The cell card isn’t being recognized. It may e related to all the other issues I am having on this laptop. But who knows. I will re-boot a bazillion times to see if it will start working.


10:49 Wondering how the recipient is doing. Hopefully not too bored in waiting area “D.” I called the wife. No answer. She is in another part of the medical complex with one of our kids. I let her know where I am and what’s going on in room 3A. I washed my hands again. I am in a hospital you know. The laptop has rebooted, finally. Let’s see if the card works. It’s recognized and I get 5 bars but it won’t connect. I will pull it out….the card silly…. And reboot (again) then put it back in then see what happens. Oh I love being a hardware tech. I guess my promise to blog as live as I can is vaporware like my quest to have media access.

.sigh.

Just checking

10:27 am Terri checked on me. Then scurried off. Click clack click clack….. A phone is ringing but no answer. It sounds like an old 60’s phone with a rattling bell tone.

I'm the doctor and you're not

10:15 am Dr. Shaw-Stiffle (sp?) came in. He’s also the Doc for the recipient. We shook hands. His was a light grip. Almost dainty. Good for a surgeon since that is his bread and butter. He did a very basic check. Simple pokes, prods and thumps here and there. He’s a very quite man that made it a bit tough to hear for me. It doesn’t help that I am losing some hearing either. Then the fan/AC was blowing which added to the ambient noise level.

He went over the donor consent form pretty quickly. A circle here an underline there and a cross out here flip the pages ask if I had any questions sign here initial everywhere sign and date here here and here you’ll get a copy thank you goodbye.


He did mention that right now, the rate of death for donors is 2 in 1500. We went into some detail, but I honestly didn’t retain much of it. It was also a bit fast to take notes on. Nothing jumped out as needing to remember either.

Rolling rolling rolling

9:35 am The room 3A is my home for the day. Olive green walls (to me). A comfortable temperature but a bit on the cold side. Two chairs, an exam table that needs to be cleaned and the doctors stool. I am glad I have a jacket, but I probably won’t wear it.


9:50 am I continue to fill out the forms from earlier. The standard consent, address, social security next of kin, relationship etc. Being a tech guy, it would be nice to be able to print these at home and bring them in. OR, fill them out on a tablet PC here in the hospital so no one will have to retype them in. That would be progressive thinking.


I am shuffling my camera, notepad and laptop around. I need another backpack since the camera won’t fit well with a lens on it and the laptop is actually too big for the bag. But I make it fit.


I can hear anonymous heels clicking out in the hallway. It reminds me of being in Basic Training when the DI’s would wear metal taps on their shoes. Click-clack, click-clack, click-clack all through the night.


10:00 am Blood pressure is 142/86, pulse 86 and temperature…..I forgot what it was. I made a reference to converting if from metric by doubling it and adding 30. You Bob and Doug McKenzie fans will understand.


10:06 am 5 pages of consent to read. This stuff should have gone out with the initial packet. There is some good stuff in here. I realized that all this is happening because of the blood type on my dog tags. Let’s hope it was right.

Welcome to 3A

9:34 am Terri C came in to let me know I have several appointments including the liver specialist, anesthesia and behavioral health. She and another Dr will be acting as air traffic controllers for the day. If I need to leave let them know. I don’t have to stick around in the exam room. While I don’t mind the olive paint, it’s not too bad.

I mentioned that I was angry…..disappointed, that I didn’t get my media request approved. I mentioned that I really had planned and hopped for a national audience if my story was done correctly

Sociaology 101

Karen asked me some standard questions, and of course once I have the opportunity to talk, I opened up a floodgate of information. Possibly so much so she may have been derailed on her standard path of social work questioning. We covered insurance, the procedures, who the recipient is, after the surgery, complications, living will, power of attorney, my general state of mind LOL, the relationship I have with the recipient, and many other questions. One thing she didn’t actually ask is WHY I am doing this. I have many reasons, but the single specific question of why didn’t come up. My initial reason is so my recipient can be around for the weddings of my children. My current reason…it’s something I want to do.

Let’s get this party started

8:30 Made it to the Montefiore portion of UPMC and the Starzl Clinic or Center. Stopped by several desks before I finally made it to the right one. AS I walked up they knew who I was. Nice service I thought, but actually, everyone else that is having an appointment today have already made it and signed in. I am the last, thus the one they know by name.

Started out with filling out the requisite forms, forms and more forms. I had one done when Karen, a social worker, pulled me into an office for an interview. She covered who would be taking care of me after the surgery, what insurance I have alternate places to stay before the surgery or during recovery. She said Pennsylvania has some funding available for donors to help defray costs of housing. There is a set limit and to let her know if it would be something I would like to take part in. I have the paperwork in case I do. UPMC is also conducting a study of living donors (can’t exactly study the dead, they don’t say much). I of course said I would be interested. Heck, they can read the blog to see how I am doing.

Up and atom

6:00 alarm goes off, time to get up and try to get out the door by 7:00 to pick up the recipient who is coming with me to the appointments.

Get the kids up, which is pretty hard at 6:30. Head downstairs to prep my camera and laptop. They all fit in my small back pack. But I can’t leave the wide angle lens on while the laptop and body are in the pack. I should just get a real photo backpack.

Hurry the last kid up to finish breakfast and get dressed. He isn’t dressed yet! and it’s 7:00. GOTTA GO!

Drop off at neighbors to wait until the bus comes. I head to pick up my chaperone.

Traffic is heavy as it always is heading downtown. My wife is ahead of us and is stuck in traffic. I opt to take an alternate route to shave a few minutes off. We take the West End bridge and hit it fairly well. Take a wrong exit and end up by the Heinz Field. Oops. Head back onto the parkway and back on track. Only a few minutes lost but we are ahead of schedule.

8:20 Arrive at UPMC drop the car off at the valet parking. Got my parking stub and said to take care of it. “See what happened last time we valet parked it”. Pointing at the torn up bumper, hail damage and oxidized paint. The valet was thinking they did it. But I said it was a joke I have been waiting to use all week. It’s all good.

Tuesday, November 14, 2006

Spread the word

Well, it sounds like all my ideas have washed out.

All for naught. I will move ahead with the blog of course. But instead of a newspaper article or a film documentary, I will be my own editor, photographer and writer. (Did you notice I put photographer first...LOL)

Send this blog link to everyone you know. Hopefully the word will get out that organ donation is a national concern.

Back story: (for those that don't want to read the full archives).
I am undergoing tests Nov 15, 16 and 17 of this year (2006) to see if I am a capable live liver donor to a person that will remain unnamed for the time being. This "recipient" is currently on the waiting list with a MELD score of 8. While that is not a score of 40, it is still a score.

Because my mind works in mysterious ways (I wonder if it works at all sometimes) I wanted to offer a photographer and journalist full access to all of my appointments while I undergo this "journey". The spark for this story was from the 2006 Pulitzer winner for feature writing and photography as well as the 2005 Pulitzer winner for feature photography.
While I didn't get those professionals to do my story. I would have died if they did and that would result in full organ donation. Different story then. I was hoping for a story in one of our local (LARGE circulation) newspapers, the Pittsburgh Post Gazette. I even spoke to the photo editor and was assigned a photographer. Then I contacted the Starzl Clinic with my intent.....they weren't so enthusiastic about it. I was referred to the media Relations department where they said "no", citing HIPAA and privacey issues.
Well, I am the patient and I am giving full consent and I believe HIPAA actually covers information released by the clinic/hospital, I didn't see any problem. Then....they said it is an "administrative policy" thus media access would be denied. Well I citied a few documentary and news articles with access to surgical rooms, procedures etc. I even called on the photo editor for help. That was nearly two weeks ago. I have heard NOTHING from the hospital or the photo editor. I have reached out to others for help, like a contact in Washington DC and an editor in my hometown newspaper as well as a news anchor I graduated with. Still, nothing. I have however heard from another live liver donor and from a photographer and a writer with experience in sensitive situations. The info I recived didn't directly help my cause....it did allow me some insight that was valuable.

Now let's jump to the here and now. I will be blogging as live as possible for the next three days. Friday is the liver biopsy. That's the big one. Assuming I pass all the other tests. I want everyone to know what it's like to go through the process of determining if I will be a capable live liver donor. I am not a writer by trade and you will see that in my posts. I will however try to evoke a sense of being there. Bear with me if I miss the mark.

I have 300 visits as of late this afternoon. Let's see how many visits I get by Saturday where I will be recuperating.

Here are the numbers so far:
Waiting list candidates as of today 2:59pm
All 93,914
Kidney 68,773
Pancreas 1,731
Kidney/Pancreas 2,417
Liver 17,065
Intestine 244
Heart 2,826
Lung 2,874
Heart/Lung 143
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 11/03/2006

Donors recovered January - August 2006
Total 10,026
Deceased Donor 5,406
Living Donor 4,620

data provided by http://www.optn.org/data/