Thursday, November 30, 2006
My wife will do a little shopping tonight and possibly this weekend. We have the lists all compiled. This is Dana's favorite time of year. My daughter is donating many of her stuffed animals to charity this year. Most of them are VERY new.
While the weather is going to run cold over the weekend, winter doesn't hit us until January. So we shall see how it goes these next few weeks.
Wednesday, November 29, 2006
Without boring you with all the acronyms and results, of which most I don't even know what they are.....
These results may or may not be accurate. I am not a doctor, nor do I play one on TV. But I would if someone asked.
We had some fun reading the REALLY big words (which I won't repeat because you really had to be there).
Here are some excerpts right from the papers:
My Ferritin levels are "442". If I researched right, they normal Ferritin levels are supposed to be between 18 and 270.
"My heart is normal in size and shape."
"There is fatty infiltration of the liver without focal lesion."
"The spleen, pancreas, adrenal glands and kidneys are normal."
"My BMI is 31.9."
"Mr. [ ] is a very pleasant gentleman." (really, it's there!)
"His belly is round." (yes, that's there too)
"Testicles are down. Scrotum is normal." (I laughed so hard at this comment I nearly fell down)
"Status: donor excluded" (This was actually on teh first page, but I thought I would use it as a comedy killer)
There were a few other specifics. They type of liver disease my former recipient has and many more details of the tests that were done on me. Some procedures were also noted.
I have an appointment in a few weeks and will get some answers to my questions. I will post more about the specifics then.
If the above Ferritin numbers were accurate and I understood the results, then I have 2-4 times the amount of iron in my blood than a normal human being. And I always joke about the reason I am lazy is the lead in my ass. But in reality, it's the iron in my blood. WHO KNEW?!?!?
Tuesday, November 28, 2006
Monday, November 27, 2006
The blog went over 500 this weekend too. Thank you. Please share the link with others.
The second possible live donor has been contacted. I am now out of that loop but will still be blogging about the status of the recipient. There is a third donor lined up too.
After that, it's probably either a very altruistic friend or stranger or a cadaver.
It's not too strange for me to share my life with family and friends. I don't always get a lot of feedback either. Which, is both good and bad. I like to know that what I do makes a difference. Doesn't everyone. But sometimes, because I speak from my heart (which isn't always logical) I may mention things in a very direct manor
and it can rub the wrong way.
Lately, it has been exactly the opposite. I have received some feedback and to be honest, it has brought me to tears. I have always had visions of grandeur. This blog is no different. That is why I beg you all to share the blog and links with others. Looking at the numbers below, it's important.
First, here are a couple of things shared with me:
1) ..with you making the decision to donate part of your liver to your
father-in-law, you also were able to find out about the hemochromatosis. To
me this was a blessing in itself. You have helped more people in your family
to be aware of this condition that is hereditary. You are such a good
person...., and what you did was fabulous, and we are so proud of you.
2) ..it's a good thing you went through all this testing -- although
it's sad that you can't help [the recipient], at least you know you have some
housekeeping to attend to. With hemochromatosis don't you have to have
blood taken periodically? It would be a good thing for all of us to be
Now the requisite numbers for the week.
|Waiting list candidates as of today 11:11am|
|All candidates will be less than the sum due to candidates waiting for multiple organs|
|Transplants performed January - August 2006|
|Based on OPTN data as of 11/17/2006|
|Donors recovered January - August 2006|
|Based on OPTN data as of 11/17/2006|
There are 17,077 people waiting for livers. When I started this blog in October there were 17,072. Only 5 livers added in a month. But there has been 683 people added to the overall list in about five weeks.
Granted, I have been on the liver train, so to speak. Now, it's everything, all organ donation. Livers and kidneys can be donated from a live person. But you can still be an organ donor in the chance that after you do die, your organs can help many of those 94 THOUSAND people.
Have I mentioned that even my 9 and 11 year old kids are donors.
One of our family friends who is about 12, received a kidney earlier this year. She is doing well.
Yes, it's a personal decision. One that when alive is pretty easy to make. For me anyway. But you MUST discuss it with your family. When you die, your family can change your decision and cancel out your status as a donor.
For those of you that are closer to me, genetically, PLEASE take the test.
Here is ONE of many resources pages on the internet.
Or the next time you see your doctor perhaps to get a flu shot, or winter checkup, or just because you have nothing else to do but spend $25.00 on a co-pay, let them know that one of your relatives has been diagnosed with Hemochromotosis and you would like to be tested. Also share this blog link with them. Perhaps they can do the same with others.
Thank you for reading....
I'm Chevy Chase, and you're not.
Thursday, November 23, 2006
Now that I have hemochromotosis, I am out.
Back to the call.
She said that I have fatty deposits in my liver. The macro and micro kind. One kind can be adjusted by diet and exercise. The other I thought she said would not be affected by diet or exercise. The fatty deposits affect about 70% of my liver right now.
Of course, if untreated it could be bad news. But I will get a call Friday for an appointment to get the real deal on what my future holds.
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?
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.
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.
Wednesday, November 22, 2006
Tuesday, November 21, 2006
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
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.
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.
Monday, November 20, 2006
Saturday, November 18, 2006
Leave a comment here on what you thought. Good, bad or unmoved.
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 candidates will be less than the sum due to candidates waiting for multiple organs|
|Transplants performed January - August 2006|
|Based on OPTN data as of 11/10/2006|
|Donors recovered January - August 2006|
|Based on OPTN data as of 11/10/2006|
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.........
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
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.
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.
8:00 pm The day has taken it's toll. I am heading to bed. Good night.
Friday, November 17, 2006
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.
9:27 am I was rolled down to 7 West by my original escort and I tried to convince him to head to the Mc
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.
8:40 am Wheeled to surgical holding, 4th 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 4th 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
“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 4th 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
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.
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.
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
4:00 pm My last appointment for the day is with the psychologist
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.
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.
My wife to my daughter home and we headed back to Montefiore to catch a shuttle to the Holiday Inn where the
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.
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
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
I do like a doughnut (or three) in the morning......SOMETIMES. :)
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.
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.
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.
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.
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.
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.
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.
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
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.
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
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
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
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 candidates will be less than the sum due to candidates waiting for multiple organs|
|Transplants performed January - August 2006|
|Based on OPTN data as of 11/03/2006|
|Donors recovered January - August 2006|
data provided by http://www.optn.org/data/
Monday, November 13, 2006
According to my sources, the gallbladder stores bile to help in the digestion of food in the small intestines.
After gallbladder surgery (or in my case liver donation) the liver still creates bile, but there isn't anywhere to store it. It will go straight to the intestines and stomach.
"As many as 20 percent of people who have surgery to remove their gallbladders (cholecystectomy) develop diarrhea. The diarrhea may last for many years. But it often improves over time — even without treatment.
The cause of diarrhea after gallbladder removal isn't clear. Many experts believe that it results from an increase in bile, especially bile acids, entering the large intestine.
The main function of the gallbladder is to store bile, a digestive fluid produced by the liver. After a meal, the gallbladder empties bile into your small intestine to help break down fats.
When the gallbladder is removed, the bile is no longer stored but goes directly into the intestines. The small intestine absorbs most of the bile as it passes through. But some bile still reaches the large intestine, which interferes with its ability to absorb water. As a result, the excess bile acts as a laxative.
Treatment of diarrhea after gallbladder removal may include:
- Antidiarrheal medications, such as loperamide (Imodium)
- Medications that impair absorption of bile acids, such as cholestyramine (Questran, Prevalite) or aluminum hydroxide (Amphojel)
- A high-fiber diet to give your stool more bulk
There's no evidence that additional changes to your diet will improve diarrhea due to gallbladder removal. But you may want to limit foods that typically worsen diarrhea, including:
- Spicy foods
- Dairy products
- Fatty foods
Certain medications — such as antacids with magnesium and tegaserod (Zelnorm) — also can increase diarrhea. Talk to your doctor before making any changes to your diet or medications."
-source the Mayo Clinic
Not that I need any help in the flatulence department. The rest are pretty disturbing. Throw them all together. I can be one hell of a discussion at the next annual stock holders meeting. Of course, no one can predict the actual outcome of the surgery so it's a hit or miss with each person. I can probably predict my results now and they ain't pretty.
But instead, it was an automated attendant, telling me I have an appointment on Thursday. "Please press 1 to accept these appointments" or something of the sorts.
Still no real word from a human.
Beginning Wednesday, I will be shifting from an "ambiguous" site to a "full disclosure" site. It should be fun blogging from the hospital in between appointments. Follow along as I post as live as I can during my appointments Wednesday, Thursday and Friday.
I haven't heard from ANYONE in over a week-week and a half. Including the photo editor of the Post-Gazette (email and phone messages), the photographer who is suppose to be assigned to me (I have never actually had any contact), an editor of my hometown newspaper (email), the hospital/clinic where I am going for the pre donor appointments nor any of the other bloggers whom I have tried to stay in contact with.
I struck out in DC where I was hoping someone would possibly be willing to help out with a human interest story. It was a loooong shot anyway.
I struck out in my Hollywood contact.
Not sure where the third strike will come from.
Not too optimistic, but my guesses are: my liver (I won't be a match) or work (they won't let me take that much time off with pay) [I don't have short term disability, too small of a company].
Friday, November 10, 2006
Who cares right.....well. No one really. But it's my blog and I'll post what I want to.....
Still no word from the PG photo editor, the photographer, the TC Herald photo editor, the documentary filmmaker or anyone else for that matter. Perhaps I have fallen into a black hole and nothing is getting out.
Thursday, November 09, 2006
My daughters heart checked out okay at the Dr. office. But they want an EKG done to make sure. So we'll get that scheduled and update you all when it happens.
I am on another call to the big computer company. This makes six calls in about a week. At least everyone I talk to is pleasant and very helpful. Do you hear that mister "Customer Advocate". ((I am not making fun of you. I was just taken by surprise)).
I guess I should have followed my own guide by not naming anyone or anything explicitly in the blog. Oops. That might leave a mark.
My wife took my daughter out of school just now because of chest pains. They are on their way to the doctor. The school nurse said it sounds like an irregular heartbeat. I talked to my daughter and she is scared. I don't like hearing that things from her point of view aren't "perfect".
On another note. I mentioned a few days ago that I had called a computer manufacturer five times in the last week or two. They were nice enough to send me an email to see if everything had been take care of. Isn't that nice. BTW, everything has been taken care of swimmingly.
I made sure to mention organ donation to the nice gentleman from the big computer manufacturer. No word yet on if he is.
I actually had a huge tirade about why. But let's leave it at face value. It all added up yesterday and I snapped.
I called and left a message on the photo editor's voice mail yesterday but as of this morning there still isn't any word about media access to my appointments or surgery, if there will be one.
Wednesday, November 08, 2006
While I could go on a tirade, I won't. Right now I am too tired to freak. It wil lbe good to see some things run by the Dems. Lets hope they do significantly better than the Republicans because it starts over again in two years. Which I will predict a Democratic president. Like that's a tough pick.
Tuesday, November 07, 2006
Got word from DC via Vegas that my "connections" didn't pan out. Thanks "B" for trying. I do applaud your effort for me some long lost cousin. Let everyone know about the blog. Hopefully something good will come of it.
If you buy a Dell, GET THE EXTENDED WARRANTY. I have called Dell 5 times in TWO days for laptops and a tape backup device going bad. Let's see, I have had two keyboard failures, a bad LCD screen, two hard drives and memory going south. Some of those issues are on the same machine. Still, it's pretty ugly. Spend the $$ get the warranty on a laptop (regardless of the manufacturer).
Tomorrow SHOULD result in a decision at the Starzl Clinic on if I get media access. It's almost like a job interview. But I don't actually have any say in the matter. I hope somone actually said, this can be a good thing. I am sure the administrators would rather just operate and make people better. After all of this and I might not even be a match. Being a believer in a conspiracey theory, even if I am a match, they could deny me for the hell of it because I put up a fight to get media access to my appointments and surgery. As one email put it, there is too much liability involved. If something goes wrong, it's tough to fool the camera.
Monday, November 06, 2006
The coordinator at the Starzl Clinic has only told me to not take anything with aspirin in it. "Read the labels" I am told. I'll see how it goes today and tomorrow. Probably call for an appointment and cancel if necessary.
Nine days until my appointments and I am getting nervous. It's one thing to go to a doctors appointment it's a whole other thing to go for three straight days. I don't think the appointments are really the issue. It's the results. If I am a match, then this is just the beginning. If I am not a match, then my "activisim" will have to go up a few notches. Which will be a beginning of a different chapter.
As of this morning, I still haven't heard from the photo editor of the paper. It sounds like we aren't on the same page. I have asked if they have an idea of wha the story would look like annd I haven't received an answer. It's probably just another human interest story to them. To me, it's the life or death of my father in law and the awareness of live donations.
I remember that comedian George Lopez undergoing a surgery not too long ago. He received a kidney from his wife. He was on all the talk shows and it was in the papers etc. But I don't remember him pushing (okay, "educating") anyone on organ donation. Live or otherwise.
That's my focus. Right now, it is usually only family members or friends that are educated about live donations and only when someone is placed on the transplant list. Granted, there are a VERY few "angel" donors that will donate to a total stranger just to donate. I am sure since this is an elective surgery and the risk of death is very real, it a risk very few people will undergo as an elective. Hell, it's tough to get people to donate blood in this country. Look at all the marketing the Red Cross has to do to get donations.
Our country has a "me me me" attitude. We all know it. Most would rather give $20.00 than blood much less an organ that is actually being used. Then there are the dead people. Even though the organ donation on the drivers licenses indicate "Organ Donor" those same people have to tell their families.
We have had that discussion as a family. The kids and the adults are ALL organ donors. Yes, both kids say they are organ donors too. We have actually been discussing it for about a year and now they know someone that needs a liver. I take great care to ensure my kids know both sides to stories. I have been chastised for telling them too much of the facts. But I also get rave reviews in the way my children behave and respond. I teach them to be aware of their surroundings. Read a store receipt (BTW, our local McD's misspelled our own town name in their receipts).
Late this morning, before I posted this update, and after a request for an update. I got an email from the photo ed and there will be a ruling Wednesday to determine if I will get to have a photog accompany me along my journey. I feel like a politician. I could use one too. ANYONE know someone that actually has clout that could ride this bandwaon of public awareness for live liver donations?
Have them contact:.................
I decided to wait until I get a response from the photo ed as to wether or not I PUSH this boundary. I am sure he will say wait and see. But times-a-ticking. did I mention this is a me me me society. And in this case, I am looking in the mirror.............
Friday, November 03, 2006
I was in Zanesville Ohio this week. My trip to Shreveport was given to someone else. So I go to the Pottery Capital of the USA and get pulled from....oh wait. My geography skills have led me astray. I thought Shreveport was closer to New Orleans. It is over 300 miles. Oh well. Here I thought I would take in the nightlife and food and environment and food and ambiance and....what ever. I'll stay home. (Like I have a choice now).
We ( I ) colored my daughters hair Tuesday. It's purple now. Yes, that was the color we expected. I'll send pictures later.
Halloween was a bust. I guess all hallows eve brings the bad out in people. My daughter was suppose to go with her two best friends (for the past 3.75 years) and they litterally drove past us as we were walking into their driveway on their way to shomewhere else.
If you could have seen the dejection in my daughters face it would have driven you to rage!
I agreed to buy her a new costume this year. She was looking pretty nice in it too. She has been looking forward to trick or treating alone (with her two friends) for quite some time. Weeks. Months perhaps. Anyway, when they drove away, it was truly one of the worst moments for me in several years.
As a parent, you hate to see dejection in your children. She was so upset she walked very fast back to the house as the cold rain mixed with the tears on her face. She wouldn't (couldn't?) even look me in the face.
I tried to salvage the evening with a trip to our local ice cream store (her FAVORITE place). She got a large ice cream and we headed back to our place to watch a movie in the theater. ALthought a movie isn't exactly a place for conversation, we sat next to each other had a few good hours together. BTW ~ We watched Jurrassic Park.
Later in the evening, one of the friends came over and apologized. Not sure if it was heart felt, but at least the words were there. My daughter took it face value. We then had the dad/daughter talk about how she needs to be able to stand up and tell people that "Dammit! You hurt me!" Not sure if it took. But at least I was able to speak a bit of my mind (and heart).
Obviously, I am still a bit jaded by this. Perhaps more than I should be. Time will heal all wounds right?