A little over 7 and a half months ago I learned about my kidney failure and started all of this process. Here are a few things I have learned.
My wife is a strong person. She has surprised me at times at her ability to handle all of the things that we have had to go through. She has been the one to help keep me focused on the good things. I am a lucky man.
I have a lot of good friends. Whenever I needed some positive thoughts and energy, there has always been someone to call or drop an email or come see me personally. They didnt know I needed them and usually the call or email would start with "hey I was just thinking about you..." They have been there to celebrate each small success I have had as well as helping me out of some funk. And then there are all of the folks, some I dont even know or know well, that have volunteered to be tested to see if they are a match. Words cant adequately describe how grateful I am to these people. More on that in a later post.
Not all Doctors are bad and not all are good. Obviously I am finding it hard to trust doctors what with the Doctor that created this problem and with my first Nephrologist that was full of bad advice (I am being polite here). I find my self second-guessing everything they do or say. I look up every drug that I am prescribed (often in the Doctor's office) before I will take it. However, I have met some incredible Doctors that I do trust and am grateful to have working on me.
The human body is an amazing machine. Most people take their bodies for granted and abuse them. I know I did. To think that the body can use fluids in the abdominal cavity as a replacement kidney leaves me speechless. Ditto for knowing that if it only has one kidney, the kidney grows some to work more efficiently. I was told in October by a couple of Doctors that they were surprised I was alive or not in a coma with the test results they got back on my kidney. My body kept working and adapting to keep me alive.
I work for and with some great people. OK, obviously this doesnt apply to everyone like a certain unnamed group that is extremely late in paying thousands of dollars for services I did for them over 6 months ago, but they are the exception to this rule. Last fall I had clients volunteering to take me to the Doctor or pick up prescriptions for me. They worked around my hemodialysis schedule (back when i was going to the clinic 3 times a week for 4 hours each time). They covered meetings and events for me. I even had vendors that would drive 40+ miles to my house to pick up things on days I didnt feel like leaving the house, even taking things to some of their competitors for me.
There are a lot of people that have kidney problems and lots of people with transplants. Even though I had done some work in the past for the kidney foundation, I never really grasped this fact. It seems almost everybody I know knows somebody or is related to somebody that has gone through this. There was even a King of the Hill episode on giving a kidney (also a South Park episode but I couldnt bring myself to watch that one). CNN did a story Wednesday night on kidney donations. Cojo was on Oprah yesterday to talk about his transplant. All of this helps reassure me that everything is going to be all right.
Friday, April 22, 2005
Monday, April 18, 2005
Music Music Music
This posting has nothing to do with my kidneys or dialysis. Thought you might want to know.
I love music. I mean I really love it. Almost all types of it, too. I listen to a lot of it and am thankful that I have XM satelite radio so I can listen commercial free to anything I am in the mood for. I decided to give you some of my favorites that you may not be aware of in hopes that you may enjoy some of them.
I was thinking about this tonight as I was sitting next to the wife and watching VH1's Save the Music while she was grading papers. Rob Thomas (formerly of Matchbox 20) did a cover of Voodoo Chile with Robert Randolph. I have been into Robert for 3 or 4 years now. He is an amazing guitarist (pedal steel guitar) and his own music is kind of a blend of funk and rock mixed with a healthy dose of uptempo spirituals (since he plays every Sunday at his church). As far as I know he only has one studio album and one live album out. Robert Randolph can be checked out at this link.
One of the great things about satellite radio is that you can press a button and see the title and artist of a song. I was coming home one night from a trip a few hours south of here right after I got my truck and XM. I was listening to Bluesville as I often do and heard a sound that just blew me away. I found out the title and artist and called home and asked my wife to write it down for me (couldnt find a pen while driving). The band was Hillstomp. They play a punk style of blues and there is only 2 people in the group. After checking Hillstomp out at their website, I ordered their album and it stays loaded in my 6 disc changer.
Lastly, is a guy that I was just talking about at dinner last Friday night, David Ryan Harris. I have been following him since 1988 or 89 when he was the front man for Follow for Now (of whom Rolling Stone magazine raved about). He is the musical director for John Mayer when he tours. David is the most talented musician I think I have ever heard and we played one of his songs at our wedding reception. Please check out David at his official website or at his fansite. After doing so, buy his albums and then check him out on tour.
Just doing my civic duty of introducing good music to all who may stumble upon my blog...
I love music. I mean I really love it. Almost all types of it, too. I listen to a lot of it and am thankful that I have XM satelite radio so I can listen commercial free to anything I am in the mood for. I decided to give you some of my favorites that you may not be aware of in hopes that you may enjoy some of them.
I was thinking about this tonight as I was sitting next to the wife and watching VH1's Save the Music while she was grading papers. Rob Thomas (formerly of Matchbox 20) did a cover of Voodoo Chile with Robert Randolph. I have been into Robert for 3 or 4 years now. He is an amazing guitarist (pedal steel guitar) and his own music is kind of a blend of funk and rock mixed with a healthy dose of uptempo spirituals (since he plays every Sunday at his church). As far as I know he only has one studio album and one live album out. Robert Randolph can be checked out at this link.
One of the great things about satellite radio is that you can press a button and see the title and artist of a song. I was coming home one night from a trip a few hours south of here right after I got my truck and XM. I was listening to Bluesville as I often do and heard a sound that just blew me away. I found out the title and artist and called home and asked my wife to write it down for me (couldnt find a pen while driving). The band was Hillstomp. They play a punk style of blues and there is only 2 people in the group. After checking Hillstomp out at their website, I ordered their album and it stays loaded in my 6 disc changer.
Lastly, is a guy that I was just talking about at dinner last Friday night, David Ryan Harris. I have been following him since 1988 or 89 when he was the front man for Follow for Now (of whom Rolling Stone magazine raved about). He is the musical director for John Mayer when he tours. David is the most talented musician I think I have ever heard and we played one of his songs at our wedding reception. Please check out David at his official website or at his fansite. After doing so, buy his albums and then check him out on tour.
Just doing my civic duty of introducing good music to all who may stumble upon my blog...
Thursday, April 14, 2005
Waiting and waiting and waiting...
Tuesday I went to see my doctor to get a referral for a non-kidney related health item. It was the first time back to the doctor since he told me that my kidneys werent working and put me in the hospital. I was flooded with a lot of unpleasant memories but at least they didnt put me in the same examination room as last time.
They made an appointment with the specialist I needed to see today at 9:30 a.m. I arrived at 9 to fill out the volumes of paperwork required of new patients. Around 10 I was told that they had yet to receive the written referral from my doctor's office and that they couldnt see me until they got it. They called the Doctor's office and was told that it was on its way. Another 30 minutes go by and they call again.
Another 30 minutes with it not being there, I drove to the doctors office to get a copy of the referral and waited around there. I was told that they had just gotten a call about the paperwork maybe 5 minutes ago and had faxed it as soon as they got it. I informed them that they had gotten two calls over about 2 hours of time and that I still wanted a copy of it before I would leave. Hurriedly they got me a copy and I left.
I arrive back at the specialist's office and told the receptionist that supposedly they faxed it. I was told that they had not received it so I laughed and provided them with the copy I had gotten.
Then I had to wait for them to fit me in. Left the office around 1:30. Nice way to waste half of a day, huh?
Maybe I should send a bill to my primary care physician for "pickup and delivery of referral" and maybe an exasperation fee.
They made an appointment with the specialist I needed to see today at 9:30 a.m. I arrived at 9 to fill out the volumes of paperwork required of new patients. Around 10 I was told that they had yet to receive the written referral from my doctor's office and that they couldnt see me until they got it. They called the Doctor's office and was told that it was on its way. Another 30 minutes go by and they call again.
Another 30 minutes with it not being there, I drove to the doctors office to get a copy of the referral and waited around there. I was told that they had just gotten a call about the paperwork maybe 5 minutes ago and had faxed it as soon as they got it. I informed them that they had gotten two calls over about 2 hours of time and that I still wanted a copy of it before I would leave. Hurriedly they got me a copy and I left.
I arrive back at the specialist's office and told the receptionist that supposedly they faxed it. I was told that they had not received it so I laughed and provided them with the copy I had gotten.
Then I had to wait for them to fit me in. Left the office around 1:30. Nice way to waste half of a day, huh?
Maybe I should send a bill to my primary care physician for "pickup and delivery of referral" and maybe an exasperation fee.
Wednesday, April 13, 2005
Got Ink?
In 1993 I was at an art museum showing of Warner Brothers Cartoons. I am a big cartoon fan. Long story short, while looking at the original cells, I decided that Marvin the Martian would be a great tattoo. After looking at several artists and studios, I got Marvin inked into my left ankle.
A few years go by and I got a band around my right ankle. A few more years, and I decided that Marvin was lonely so I got his dog K-9 tattooed bedside him, with plans of getting more cartoon charcters on me left ankle, basically making a cartoon band. If you were to see me in a suit and tie, you would never guess that I had any tattoos. None at all.
After all of the healthcare drama I had last year, I started thinking I needed another tat. What should I get and where should I get it? And could I even get another because of my health situation?
I started purusing the net looking for suggestions. I thought of a butterfly because of the rebirth symbolism which would go along with me almost dying last year and with the thanks of a new kidney being given a new chance on life. I couldnt find any "masculine" butterflies that I would want for the rest of my life. I even thought of having "John Doe was here" with an arrow pointing to my kidney and using the name of whomever gave me a kidney instead of John Doe but then I thought that was cheesy (original but cheesy).
Finally I called my transplant coordinator. Transplant coordinators are like a second mother. They work out the details for the testing and the surgery. They have to know where you are and how to reach you at any given time. They help answer questions, offer advice, and give you a shoulder to cry on. I told her what I wanted to do and asked if it would impact negatively getting a transplant. She admitted this was the first time she had been asked that but we worked out the pros and cons and a cut-off date of when I had to have it by.
I kept looking at designs, and finally came across the idea of a phoenix. It holds the same symbolism as the butterfly but a lot more manly. I decided to do it as a cover up on the band on my right ankle (which has lost its meaning to me over time).
Last Thursday, after we got back from Vegas, I did a manual dialysis exchange (obviously couldnt do it on the plane at night when I sleep like I do now) and took a 4 hour nap. I awoke, showered and headed to the tattoo studio. I had already went and met with the artist and he worked on the drawing. A couple of hours later, I emerged more colorful (and a little sorer) with a Phoenix coming out of some flames that go all the way around my ankle. The last tattoo, I can ever get.
A few years go by and I got a band around my right ankle. A few more years, and I decided that Marvin was lonely so I got his dog K-9 tattooed bedside him, with plans of getting more cartoon charcters on me left ankle, basically making a cartoon band. If you were to see me in a suit and tie, you would never guess that I had any tattoos. None at all.
After all of the healthcare drama I had last year, I started thinking I needed another tat. What should I get and where should I get it? And could I even get another because of my health situation?
I started purusing the net looking for suggestions. I thought of a butterfly because of the rebirth symbolism which would go along with me almost dying last year and with the thanks of a new kidney being given a new chance on life. I couldnt find any "masculine" butterflies that I would want for the rest of my life. I even thought of having "John Doe was here" with an arrow pointing to my kidney and using the name of whomever gave me a kidney instead of John Doe but then I thought that was cheesy (original but cheesy).
Finally I called my transplant coordinator. Transplant coordinators are like a second mother. They work out the details for the testing and the surgery. They have to know where you are and how to reach you at any given time. They help answer questions, offer advice, and give you a shoulder to cry on. I told her what I wanted to do and asked if it would impact negatively getting a transplant. She admitted this was the first time she had been asked that but we worked out the pros and cons and a cut-off date of when I had to have it by.
I kept looking at designs, and finally came across the idea of a phoenix. It holds the same symbolism as the butterfly but a lot more manly. I decided to do it as a cover up on the band on my right ankle (which has lost its meaning to me over time).
Last Thursday, after we got back from Vegas, I did a manual dialysis exchange (obviously couldnt do it on the plane at night when I sleep like I do now) and took a 4 hour nap. I awoke, showered and headed to the tattoo studio. I had already went and met with the artist and he worked on the drawing. A couple of hours later, I emerged more colorful (and a little sorer) with a Phoenix coming out of some flames that go all the way around my ankle. The last tattoo, I can ever get.
Tuesday, April 12, 2005
A few less drugs
Forgot to share the news... I am on a few less drugs.
When you are on hemodialysis, you lose blood. Some is left in the tubing and the filter after each use. Your body has a hard time replacing the lost blood cells naturally (especially with weakened kidneys) so you are given Epogen each time you are on dialysis by putting it into the lines used to drain and fill your blood. When I switched to PD, they gave me the Epogen as a shot (actually two) once a week. The 2 shots equaled what they normally would give me in a week. Usually about an hour or so after the shots my arms would be stiff and sore. A couple of weeks ago they took me down to 1 shot a week and last week when I got back from vegas I was told my red blood cell count was high enough that I didnt have to take no more Epogen. Matter of fact, red blood cell count is in the normal range (ie working kidneys range).
Also, I am off of my blood pressure medicine I was taking 3 x a week, 4 tablets each time. I have never had blood pressure problems until I went on PD but now back to normal.
So I am now down to 6 prescription pills a day and no shots. I am pretty happy. Also means I only have to go see my dialysis nurse once a month to have my blood work drawn up and to see the Nephrologist instead of the weekly visit for a shot.
No this does not mean my kidneys are working any more than they were. That cant happen.
When you are on hemodialysis, you lose blood. Some is left in the tubing and the filter after each use. Your body has a hard time replacing the lost blood cells naturally (especially with weakened kidneys) so you are given Epogen each time you are on dialysis by putting it into the lines used to drain and fill your blood. When I switched to PD, they gave me the Epogen as a shot (actually two) once a week. The 2 shots equaled what they normally would give me in a week. Usually about an hour or so after the shots my arms would be stiff and sore. A couple of weeks ago they took me down to 1 shot a week and last week when I got back from vegas I was told my red blood cell count was high enough that I didnt have to take no more Epogen. Matter of fact, red blood cell count is in the normal range (ie working kidneys range).
Also, I am off of my blood pressure medicine I was taking 3 x a week, 4 tablets each time. I have never had blood pressure problems until I went on PD but now back to normal.
So I am now down to 6 prescription pills a day and no shots. I am pretty happy. Also means I only have to go see my dialysis nurse once a month to have my blood work drawn up and to see the Nephrologist instead of the weekly visit for a shot.
No this does not mean my kidneys are working any more than they were. That cant happen.
Friday, April 08, 2005
More Vegas
Yes, I know I am blogging alot...
I need to look up who invited the cycler and send them a thank you card if they are still around. Without a dialysis machine like the cycler, I couldnt have done Vegas (at least not easily). I had to send ahead my supplies and carry my machine through the airport. I even had a note from my doctor saying that the device in the bag was not a bomb....
We stayed at the Venetian because 1) it is nice and 2) they had a special on the internet. The rooms are huge with a sunken living room and a canopy over the bed. When we checked in, was told that the supplies I sent ahead would be up in about 30 minutes. Took 2 hours which cut into our gambling time. Had a dealer not happy that we were newcomers to craps so we left and only played at the Venetian when we were coming in or going out. The last night we were killing time before our trip out and had an obnoxious craps supervisor or pit boss or whatever he was. We decided to leave a little early because of this guy and checked to see if our car we had reserved from the hotel the night before could leave early. They had lost our reservation so we just took a cab. Dont think we will stay (or play) at the Venetian next time.
We didnt see any shows. Most of the ones we wanted to check out were "black" on Mondays and Tuesdays. Keep that in mind if you are planning to go to Vegas. Watched a couple of minutes of a Dean Martin impersonator. Had our picture taken with a showgirl. Most of our photos should be up tonight on our Ofoto account. Email me if you need the link.
One interesting thing I found out... some of the cheaper, no name casinos on the strip had nicer toilet paper. Bellagio uses sand paper.
I need to look up who invited the cycler and send them a thank you card if they are still around. Without a dialysis machine like the cycler, I couldnt have done Vegas (at least not easily). I had to send ahead my supplies and carry my machine through the airport. I even had a note from my doctor saying that the device in the bag was not a bomb....
We stayed at the Venetian because 1) it is nice and 2) they had a special on the internet. The rooms are huge with a sunken living room and a canopy over the bed. When we checked in, was told that the supplies I sent ahead would be up in about 30 minutes. Took 2 hours which cut into our gambling time. Had a dealer not happy that we were newcomers to craps so we left and only played at the Venetian when we were coming in or going out. The last night we were killing time before our trip out and had an obnoxious craps supervisor or pit boss or whatever he was. We decided to leave a little early because of this guy and checked to see if our car we had reserved from the hotel the night before could leave early. They had lost our reservation so we just took a cab. Dont think we will stay (or play) at the Venetian next time.
We didnt see any shows. Most of the ones we wanted to check out were "black" on Mondays and Tuesdays. Keep that in mind if you are planning to go to Vegas. Watched a couple of minutes of a Dean Martin impersonator. Had our picture taken with a showgirl. Most of our photos should be up tonight on our Ofoto account. Email me if you need the link.
One interesting thing I found out... some of the cheaper, no name casinos on the strip had nicer toilet paper. Bellagio uses sand paper.
Events Last Week
So last week I had a couple of events that I forgot to blog about... sorry just kinda busy with work and then getting ready to go to Vegas.
My wife is a teacher. At the school she teaches, they hold a male pageant. Talent, evening wear, casual wear and the usual questioning and answering stuff. The proceeds this year went to a student that had a heart transplant last year and also to help me with some of the medical expenses. Students gave us a standing ovation. Real nice event.
The other event of the week was a black tie event for the National Kidney Foundation. We sat at Coke's table (the biggest sponsor of the event) since they had some extra seats. Great food. Good band. The event honoroed Griffin Bell, former US Attorney General, who had a kidney transplant a few years ago. The wife looked simply ravishing.... Met some really nice people at our table. Told them about my need for a kidney (thus the reason we were at the event) and one guy wanted to buy us tickets for Celine Deon in Vegas.... Was trying to say no gracefully (I mean maybe it would have been different if he had offered Elton John.... hahaha) when his girlfriend saw how uncomfortable it was making us and she talked him out of it.Everybody at the table filled out organ donor cards.
My wife is a teacher. At the school she teaches, they hold a male pageant. Talent, evening wear, casual wear and the usual questioning and answering stuff. The proceeds this year went to a student that had a heart transplant last year and also to help me with some of the medical expenses. Students gave us a standing ovation. Real nice event.
The other event of the week was a black tie event for the National Kidney Foundation. We sat at Coke's table (the biggest sponsor of the event) since they had some extra seats. Great food. Good band. The event honoroed Griffin Bell, former US Attorney General, who had a kidney transplant a few years ago. The wife looked simply ravishing.... Met some really nice people at our table. Told them about my need for a kidney (thus the reason we were at the event) and one guy wanted to buy us tickets for Celine Deon in Vegas.... Was trying to say no gracefully (I mean maybe it would have been different if he had offered Elton John.... hahaha) when his girlfriend saw how uncomfortable it was making us and she talked him out of it.Everybody at the table filled out organ donor cards.
Thursday, April 07, 2005
Viva Las Vegas
Just flew in from Vegas and boy are my arms tired {rimshot}... and my legs and my...
Wifey and I spent three days in Vegas and flew in on the red eye this a.m. It was my first trip and her second. I learned to play Craps and did fairly well. Broke even on Let it Ride (which I also just learned) and maybe made $50 total on Blackjack (which used to be my favorite by looks like it is now being replaced with Craps).
We walked... an awful lot. We took a cab to the old Vegas mainly to see Binion's Horseshoe Casino. Binion's is the place that put poker on the map. It started the World Series of Poker in the 70's and hosted it until this year. The World Series has gotten so big that it no longer can fit inside Binion's so this year it will be played at the Rio, just off the strip. The wife and I love the sport of poker. She even plays in a monthly girls only game of which I am usually a dealer.
Wednesday we walked over to the Bellagio after lunch. The Bellagio was hosting a stop on the World Poker Tour tournament. We watched for a while and kept hoping to see of the poker superstars that we love to watch on the telly. Finally we went to the second room being used in the tournament. We hit the jackpot there. Sittting at various tables were several big names in poker. There was Amir Vahidi chewing on his cigar. A few others were recognized including Scotty Nguyen. Scotty has won more in poker tournaments than almost anybody else. We sat about 6 feet from him and listened as he and another real pro sitting next to him discussed the playing styles of everybody at the table (mostly amatures wasting cash). What other sport can you sit 6 feet from the biggest stars of the sport and listen to them discuss strategy? Or for that matter if you have the balls to put up several thousand you could actually have the opportunity to play against the big names. Scotty is a nicotene junky and since smoking is not allowed in the Poker room he had to get up to go puff on a cigarrette in the main part of the casino. I followed him out and got him to sign the back of one of my business cards. We talked for a while and he seems to be a really nice guy. I told him that one day I hope to have the balls to be sitting at a table with him and what an honor that would be. He said he would look forward to it, asked me my name, and shook my hand. Class act.
One interesting note, Wednesday night we ate at the Mirage. On my way to the bathroom I just happened to see the Poker Room. I looked in and saw the dreaded Phil Hellmuth. I love watching him lose! The good news for me, is obviously he didnt make it too far at the WPT tourney at the Bellagio and was forced to go take money from amatures away from the bright lights of the television cameras.
Wifey and I spent three days in Vegas and flew in on the red eye this a.m. It was my first trip and her second. I learned to play Craps and did fairly well. Broke even on Let it Ride (which I also just learned) and maybe made $50 total on Blackjack (which used to be my favorite by looks like it is now being replaced with Craps).
We walked... an awful lot. We took a cab to the old Vegas mainly to see Binion's Horseshoe Casino. Binion's is the place that put poker on the map. It started the World Series of Poker in the 70's and hosted it until this year. The World Series has gotten so big that it no longer can fit inside Binion's so this year it will be played at the Rio, just off the strip. The wife and I love the sport of poker. She even plays in a monthly girls only game of which I am usually a dealer.
Wednesday we walked over to the Bellagio after lunch. The Bellagio was hosting a stop on the World Poker Tour tournament. We watched for a while and kept hoping to see of the poker superstars that we love to watch on the telly. Finally we went to the second room being used in the tournament. We hit the jackpot there. Sittting at various tables were several big names in poker. There was Amir Vahidi chewing on his cigar. A few others were recognized including Scotty Nguyen. Scotty has won more in poker tournaments than almost anybody else. We sat about 6 feet from him and listened as he and another real pro sitting next to him discussed the playing styles of everybody at the table (mostly amatures wasting cash). What other sport can you sit 6 feet from the biggest stars of the sport and listen to them discuss strategy? Or for that matter if you have the balls to put up several thousand you could actually have the opportunity to play against the big names. Scotty is a nicotene junky and since smoking is not allowed in the Poker room he had to get up to go puff on a cigarrette in the main part of the casino. I followed him out and got him to sign the back of one of my business cards. We talked for a while and he seems to be a really nice guy. I told him that one day I hope to have the balls to be sitting at a table with him and what an honor that would be. He said he would look forward to it, asked me my name, and shook my hand. Class act.
One interesting note, Wednesday night we ate at the Mirage. On my way to the bathroom I just happened to see the Poker Room. I looked in and saw the dreaded Phil Hellmuth. I love watching him lose! The good news for me, is obviously he didnt make it too far at the WPT tourney at the Bellagio and was forced to go take money from amatures away from the bright lights of the television cameras.
Saturday, April 02, 2005
Another Update
Wednesday night I started on the cycler. With the cycler you are doing peritoneal dialysis but instead of doing it manually 4 times a day, you hook up to a machine when you go to sleep and the machine does everything while you sleep. You wake up and everything is done for the day (sometimes you have to a manual exchange during the day but I dont for now). I love the freedom.
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