I have been screaming to the top of my lungs forever (it seems) abut the need for Organ Donor Education and policy changes in this country....
This example has fallen into my lap quite suddenly and I have my sisters consent to blog about it....thank you Dawn.....I hope it will serve to educate at least one person.....
My sister Dawn is married to Geoff who has a sister named Karen. Karen lives in Maryland......Karen suddenly without any warning whatsoever collapsed the other day .......they took her to the hosptial where it was determined she had a cerebral hemmorage and her famiy was told she had 48 hrs to live......she was immediately placed on life support. (was this possibly what happened to John Ritter...I cant remember)
I have been speaking to Dawn about how Geoff is going, how his family is handling this sad event and I asked Dan "Was karen an Organ Donor" and her response was this" I want to know the same thing but I am afraid to ask"
Turns out the family is quite undertandably upset and dealing with HUGE loss in their lives. Karen was ony in her early 50's.
A few hours later Dawn called to say she asked the question and was told yes that Karen was a donor and that she has been left on life support as her body is being evaluated for donation.
Now remember not everyone is a candidate for donation....and not all deaths allow for major organ donation.....sudden head trauma/ brain death is one of the deaths that generally work.
The reason I am writing this is to generate the discussion of awareness....have you told your family your wishes? Time of accident or death especially sudden death is NOT the time to discuss this for the very first time....people are way too confused, upset and in grief......
If families are made aware of your wishes and UNOS comes in to ask the question everyone will be well prpared and although thieir grief is still the same, the answer is clear....
Now everything is still being done to evaluate Karen since a small amount of brain activity was just discovered.......I will keep you posted on her sad situation.....but a huge thank you to this wonderful person for speaking to her family in advance and letting them know she is an organ donor.....
Saturday, July 30, 2011
Wednesday, July 27, 2011
Hospital Stays Tammy Style
First allow me to say I am an expert of "Hospital Stays 1-0-1"
I believe my family would back me up on my count of approximately 30-40 hospital stays over the last 15 yrs.....probably more.....I stopped counting a long time ago.....
My stories of in hosptial care should be co- written by Miranda and Marissa....as they have both been to almost every one of them.....they tell it best.....starting with the stories of falling asleep midst card games......waxing off eyebrows the day I gt discharged....dyng my hair crazy colors before drugs wear offf.....the stories are endless and we can laugh at them all now......you HAVE to laugh!
Given the condition of my liver and the stent that lives in it, lets just say that heavy drugs are not a really wise choice for me....yet I get to the ER...usually quite upset...usually having nausea, abdominal pain and lately much confusion with high ammonia levels (encepholopathy) so the drugs begin....
First its always the shot of morphine along with phenergan( or zophran) and then adderal to callm me down....on to the dilauded and ambien.......the rest is quite a blur.....a dribbling, drooling, not so pretty blur...
So guess where I was found in the middle of the night THIS TIME the VERY first night???
Seems I either fell or just decided to go to sleep on the floor! (my vote is for just going to sleep since I had no injurys from any type of "fall")
The charge nurse looked for me at about 1 am and when I wasn't in my bed she assumed I was in the restroom...an hour later she came back and checked the restroom (which was empty) and then spotted my feet sticking out from the far side of the bed. I woke up to five people yelling "Tammy! Dont move! Are you OK? Did you fall???"
The rest again is a big blur.
When I finally became coherant again I discovered I had a person assigned to my bedside 24 hrs a day! Yep! If I got up, she got up...if I went the the restroom she went to the restroom! LOL
My daughters both took care of explaining the the staff and doctor that someone in my condition cannot and should not be given heavy narcotics as it is not processed through my scarred liver and goes right to my head along with the high levels of ammonia. ONly making matters worse.....
So once again , I remember very little about my hosptial stay this time......except to be shown funny pictures my daughter took and reading some of the embarrassing texts i sent out in my drug crazed frame of mind.
So note to self and all surrounding my bizarre existence......NO NARCOTICS POR FAVOR......
That's 4 days Ill never get back!
I believe my family would back me up on my count of approximately 30-40 hospital stays over the last 15 yrs.....probably more.....I stopped counting a long time ago.....
My stories of in hosptial care should be co- written by Miranda and Marissa....as they have both been to almost every one of them.....they tell it best.....starting with the stories of falling asleep midst card games......waxing off eyebrows the day I gt discharged....dyng my hair crazy colors before drugs wear offf.....the stories are endless and we can laugh at them all now......you HAVE to laugh!
Given the condition of my liver and the stent that lives in it, lets just say that heavy drugs are not a really wise choice for me....yet I get to the ER...usually quite upset...usually having nausea, abdominal pain and lately much confusion with high ammonia levels (encepholopathy) so the drugs begin....
First its always the shot of morphine along with phenergan( or zophran) and then adderal to callm me down....on to the dilauded and ambien.......the rest is quite a blur.....a dribbling, drooling, not so pretty blur...
So guess where I was found in the middle of the night THIS TIME the VERY first night???
Seems I either fell or just decided to go to sleep on the floor! (my vote is for just going to sleep since I had no injurys from any type of "fall")
The charge nurse looked for me at about 1 am and when I wasn't in my bed she assumed I was in the restroom...an hour later she came back and checked the restroom (which was empty) and then spotted my feet sticking out from the far side of the bed. I woke up to five people yelling "Tammy! Dont move! Are you OK? Did you fall???"
The rest again is a big blur.
When I finally became coherant again I discovered I had a person assigned to my bedside 24 hrs a day! Yep! If I got up, she got up...if I went the the restroom she went to the restroom! LOL
My daughters both took care of explaining the the staff and doctor that someone in my condition cannot and should not be given heavy narcotics as it is not processed through my scarred liver and goes right to my head along with the high levels of ammonia. ONly making matters worse.....
So once again , I remember very little about my hosptial stay this time......except to be shown funny pictures my daughter took and reading some of the embarrassing texts i sent out in my drug crazed frame of mind.
So note to self and all surrounding my bizarre existence......NO NARCOTICS POR FAVOR......
That's 4 days Ill never get back!
Saturday, July 16, 2011
MY experience with insurance in this country
Well, let's see...where do I begin.....this blog will be about the insurance nightmare that has become my life...and my lovely ex husbands contribution to it all :)
When I was married, we both had good insurance through our jobs...his was through the prison system in Texas (he was a teacher in a jail when we moved to Texas, hence his sparkling personality) and my insurance was through the school district I worked for for 5 yrs.
When I left the school (I had to go out on disability cause I ended up yet again in the hospital) we had a choice....which insurance should we continue to use? We weighed the pros and cons of each and decided that HIS insurance was less expensive in the long run, so that is the one we kept. The specialists were on both of our plans.
Now, please keep in mind that when you are married for twenty years there is no YOURS or MINE....everything is OURS....unless you live in my ex-husband's head....and THAT trainwreck of a mind will never be figured out by anyone......
As soon as I left him in 2006, we went right to court, and the judge wouldn't grant us a divorce stating she was afraid he would try to cancel my health and life insurance and that he was not allowed to do that since I had such a serious illness....she got a very clear view into his personality when the man would not shut up and rambled on and on and on.....my lawyers just whispered in my ear, do NOT say a word, we are winning big time since he cant shut his mouth.......h sunds like a complete lunatic!!
The judge stopped him finally and said we would be legally seperated and could live as a divorced couple, but in order to have continuation of health insurance we would revisit the plan in a year.....and then she granted me child support AND alimony (VERY RARE in the state of Texas and you would have thought someone killed his puppy the way he carried on complaining! The judge said to him " it sounds like you"re so much more worried about how you will afford to live, but honestly I'M more worried about HER living at ALL.....ect...) We walked out of that court room with DOUBLE what I asked for....THIS should tell you something about my ex husband!! DOUBLE!!!
So what was the very first thing I did when we left court?
I stopped him on the front steps and told him he didn't need to pay the alimony but to please pay the child support...subsequently, he made ONE payment and never EVER paid again! Dirtbag....and no I didn't take him back to court, I decided I could support my own child and didn't need his money to do it anyway and it simply wasn't worth my time or effort to try to get Texas to MAKE him pay....now I wish I had banked all of that money he owes me and put it in a transplant fund!!
What was the first thing HE did upon leaving court???
He spitefully canceled my life insurance.....keep in mind someone with MY illness is not elidgable for life insurance and the policy we held together was a universal policy that was completely paid off....we bought it 20 yrs prior when we first got married! Ill never forget the day he called me laughing telling me my life insurance was gone and he knew I could never buy another policy!
Whe I told my daughter, she flipped out and called him immediately "Thanks DAD.....this didn't hurt MOM, it hurt ME since MOMS insurance was going to ME to handle her funeral expenses and such" His dumbass response was something unintelligable like" oh derr ummmm...." Lets just say not the brightest bulb in the pack. Since 2006 my daughter has seen him maybe 15 times.....when I left him he decided he would hurt ME through HER,,,,,,karma.....I believe in karma and one day he will get his......till then, I don't give him a second thought (unless I am blogging about my past! LOL) And it makes me proud knowing that when my daughter needs something she can and always does come to ME never him cause she knows he wont help......for hr 18th birthday he gave a a card a few days late and in it was a letter explaining why he would not give her a present.....he said he had to think of himself and his retirement and that giving her a present wold interfere with that plan....he said this would help her to grow...then he signed his name with his firt name.....to this day it still breaks my heart for her whenever I think of the things he has done to hurt her......he is an ass.....
Oooops back to my insurance story......
so....
I ended up in the hospital again and I missed a court appearance, I was considered a "no show" (I was in the hospital in a freakin COMA for God's Sake during that time!) and he was granted the divorce...different judge...... and the very next thing HE does is........ready???
He quit his job so he would LOSE our health insurance.......he told my daughter this was very funny to him...he said things like "now she has no health insurance either!!" How many ways can we say CRAZY??
and the word COBRA came into my life.
Anyone know how expensive Cobra is? VERY!
I cobra'd the insurance for as long as I could and moved to Hawaii to be near my daughter and brand new granddaughter.........when Cobra was gone I applied for insurance in Hawaii and they said yes......Hawaii has it right....they mandate all of the employers give full coverage to their employees that work a min of 20 hrs a week and their state insurance is there for everyone else....they feel in this state that everyone should be covered under insurance. Wouldn't it be nice if the rest of the country followed suit!?
I applied for EVERY private insurance there is and was denied by each and every one of them.....they all said the same thing....you are TOO sick so we do NOT have to take you on......it is what is called a "Catostrophic Clause" in private health insurance companies......
Remember don't ever get TOO sick for insurance....that'll fuck ya every time! lol (not funny )
So, I had since moved back to Texas for my job and kept applying for insurance in the state of Texas....they said no every single time....no....no...declined...declined.....why? They said since I earned more then $800 month that I made too much money......THIS is why people are forced to hide money in this country......not me! Im afraid of the IRS and pay every dime due on my taxes so that was never an option for me.......
A friend helped me with some information and I went to Congress and immediatly "Congressional urgency" was placed on my file to try and push through the Texas insurance......The Congressman's office saw the media attention I was getting and decided to help me.....even with his offices help the answer just came quicker.....it was still a no....
they said if i dropped my Hawaii insurance then they might consider it....I said NO WAY IN HELL am I dropping the only insurance I have in the hopes that MAYBE Texas might approve my application after being denied over 14 times!! Even the rep on the phone said she didn't blame me that if it were her she wouldn't drop the only insurance she had. And that was a smart decision because once again I was even turned down for the "buy in" program!!
So the decision was made ....I had to move back to Hawaii and be a full time resident (no longer the dual residency I had held)......this is where I am now, living in Hawaii.....hoping the Hawaii insurance will transfer over to what is called Circa (insurance co that heads transplant in Hawaii) and approve me for Transplant Evaluation.....
The good news? I am living very near my oldest daughter and granddaughter....my youngest is moving here in few weeks to help me through impending evaluation and surgery......and it is gorgeous paradise here every single day.....I am counting my blessings.....
Remember these words.....life is not fair...no one EVER promised you fair....you take what God gives you and you make the best of things.....
Thanks Mom.....you are right about that!
And I taught MY kids these words:
Never be Ordinary.....
When I was married, we both had good insurance through our jobs...his was through the prison system in Texas (he was a teacher in a jail when we moved to Texas, hence his sparkling personality) and my insurance was through the school district I worked for for 5 yrs.
When I left the school (I had to go out on disability cause I ended up yet again in the hospital) we had a choice....which insurance should we continue to use? We weighed the pros and cons of each and decided that HIS insurance was less expensive in the long run, so that is the one we kept. The specialists were on both of our plans.
Now, please keep in mind that when you are married for twenty years there is no YOURS or MINE....everything is OURS....unless you live in my ex-husband's head....and THAT trainwreck of a mind will never be figured out by anyone......
As soon as I left him in 2006, we went right to court, and the judge wouldn't grant us a divorce stating she was afraid he would try to cancel my health and life insurance and that he was not allowed to do that since I had such a serious illness....she got a very clear view into his personality when the man would not shut up and rambled on and on and on.....my lawyers just whispered in my ear, do NOT say a word, we are winning big time since he cant shut his mouth.......h sunds like a complete lunatic!!
The judge stopped him finally and said we would be legally seperated and could live as a divorced couple, but in order to have continuation of health insurance we would revisit the plan in a year.....and then she granted me child support AND alimony (VERY RARE in the state of Texas and you would have thought someone killed his puppy the way he carried on complaining! The judge said to him " it sounds like you"re so much more worried about how you will afford to live, but honestly I'M more worried about HER living at ALL.....ect...) We walked out of that court room with DOUBLE what I asked for....THIS should tell you something about my ex husband!! DOUBLE!!!
So what was the very first thing I did when we left court?
I stopped him on the front steps and told him he didn't need to pay the alimony but to please pay the child support...subsequently, he made ONE payment and never EVER paid again! Dirtbag....and no I didn't take him back to court, I decided I could support my own child and didn't need his money to do it anyway and it simply wasn't worth my time or effort to try to get Texas to MAKE him pay....now I wish I had banked all of that money he owes me and put it in a transplant fund!!
What was the first thing HE did upon leaving court???
He spitefully canceled my life insurance.....keep in mind someone with MY illness is not elidgable for life insurance and the policy we held together was a universal policy that was completely paid off....we bought it 20 yrs prior when we first got married! Ill never forget the day he called me laughing telling me my life insurance was gone and he knew I could never buy another policy!
Whe I told my daughter, she flipped out and called him immediately "Thanks DAD.....this didn't hurt MOM, it hurt ME since MOMS insurance was going to ME to handle her funeral expenses and such" His dumbass response was something unintelligable like" oh derr ummmm...." Lets just say not the brightest bulb in the pack. Since 2006 my daughter has seen him maybe 15 times.....when I left him he decided he would hurt ME through HER,,,,,,karma.....I believe in karma and one day he will get his......till then, I don't give him a second thought (unless I am blogging about my past! LOL) And it makes me proud knowing that when my daughter needs something she can and always does come to ME never him cause she knows he wont help......for hr 18th birthday he gave a a card a few days late and in it was a letter explaining why he would not give her a present.....he said he had to think of himself and his retirement and that giving her a present wold interfere with that plan....he said this would help her to grow...then he signed his name with his firt name.....to this day it still breaks my heart for her whenever I think of the things he has done to hurt her......he is an ass.....
Oooops back to my insurance story......
so....
I ended up in the hospital again and I missed a court appearance, I was considered a "no show" (I was in the hospital in a freakin COMA for God's Sake during that time!) and he was granted the divorce...different judge...... and the very next thing HE does is........ready???
He quit his job so he would LOSE our health insurance.......he told my daughter this was very funny to him...he said things like "now she has no health insurance either!!" How many ways can we say CRAZY??
and the word COBRA came into my life.
Anyone know how expensive Cobra is? VERY!
I cobra'd the insurance for as long as I could and moved to Hawaii to be near my daughter and brand new granddaughter.........when Cobra was gone I applied for insurance in Hawaii and they said yes......Hawaii has it right....they mandate all of the employers give full coverage to their employees that work a min of 20 hrs a week and their state insurance is there for everyone else....they feel in this state that everyone should be covered under insurance. Wouldn't it be nice if the rest of the country followed suit!?
I applied for EVERY private insurance there is and was denied by each and every one of them.....they all said the same thing....you are TOO sick so we do NOT have to take you on......it is what is called a "Catostrophic Clause" in private health insurance companies......
Remember don't ever get TOO sick for insurance....that'll fuck ya every time! lol (not funny )
So, I had since moved back to Texas for my job and kept applying for insurance in the state of Texas....they said no every single time....no....no...declined...declined.....why? They said since I earned more then $800 month that I made too much money......THIS is why people are forced to hide money in this country......not me! Im afraid of the IRS and pay every dime due on my taxes so that was never an option for me.......
A friend helped me with some information and I went to Congress and immediatly "Congressional urgency" was placed on my file to try and push through the Texas insurance......The Congressman's office saw the media attention I was getting and decided to help me.....even with his offices help the answer just came quicker.....it was still a no....
they said if i dropped my Hawaii insurance then they might consider it....I said NO WAY IN HELL am I dropping the only insurance I have in the hopes that MAYBE Texas might approve my application after being denied over 14 times!! Even the rep on the phone said she didn't blame me that if it were her she wouldn't drop the only insurance she had. And that was a smart decision because once again I was even turned down for the "buy in" program!!
So the decision was made ....I had to move back to Hawaii and be a full time resident (no longer the dual residency I had held)......this is where I am now, living in Hawaii.....hoping the Hawaii insurance will transfer over to what is called Circa (insurance co that heads transplant in Hawaii) and approve me for Transplant Evaluation.....
The good news? I am living very near my oldest daughter and granddaughter....my youngest is moving here in few weeks to help me through impending evaluation and surgery......and it is gorgeous paradise here every single day.....I am counting my blessings.....
Remember these words.....life is not fair...no one EVER promised you fair....you take what God gives you and you make the best of things.....
Thanks Mom.....you are right about that!
And I taught MY kids these words:
Never be Ordinary.....
Tuesday, July 12, 2011
My job in music...lol
I get asked a lot how I came to work in the music business.....the story is actually kind of funny and a bit sad as well...
My ex husband decided at age 39 (we are exactly the same age) that he was going to be a "rock star"....of course he didn't bother to share this information with me....it was only in his head......so he packed us up and sold our house in NY and his business in NY and told us we were going because I "needed to live near my family in Austin".....little did I know, the REAL reason was because he knew that Austin was the Live Music Capital of the World and he could try his hand at being the next Neil Purt....lol.....to this day in MY head every time I envision him playing those drums I am screaming "LESS IS MORE, NIMROD, LESS IS MORE" a concept way lost on him I tell you!
So there were were in January of 2011 in Leander Texas in the first house we bought in Texas while we searched for land so we could build our dream house......
That part was wonderful! We built a 4300 sq ft custom built home on 5 acres in Leander Texas and I was the General Contractor! This included a three car garage and a gorgeous wrap around porch......I searched for and ordered the blue prints, tweeked them to my specs and interviewed and hired everyone from the foundation crew to the framer to the last finisher.....and boy was it fun picking out appliances and carpeting and ceramic tiles.....even my light switches, ceiling fans, insulation.....every nail and blade of grass was carefully chosen! lol
I am proud to say while my ex husband showed up each day to drink beer with the workers, I built a house from start to finish in 4 months time! And it was gorgeous! I will forever miss that home ......he swears he helped build the house....I beg to differ! Drinking beer and slowing down every crew is not building a house....its annoying the workers! LOL
But on to the music thing...
So one day as I was sitting on the couch in my beuatiful new home, wishing my life was different and my ex husband was out in the backyard in the sound studio we built for his latest band to practice in, I decided if I didnt find a way to be part of this music thing, i would end up alone and lonlier then being in that arraige, so I picked up the phone....and I started to get his REALLY bad band booked in some of the premier places in Austin......turns out I was good at this.....
Enter Nuno and Angie......Nuno kept letting me and Angie rebook this God Aweful Band at his club and came to me one day and said "Tammy, do you know this band is the lowest ringing band ever to play in my club? yet I keep rebooking the cause I like YOU so much! Imagine if you had some real talent.......lets start a production company and you work for me!"
And so I did......Nuno sent a moving truck to move me out of that unhappy marraige and we called the production company "Handshake Productions".......Jo Hell was one of our very first clients.....and then it was Kayla Reeves (who is now touring with the Trans Siberian Orchestra all over the world!) then Sonny Wolf.....JT Coldfire...the list just goes on and on and on.....Wes Jeans! Alan Haynes......so many wonderful artists....I learned all about Blues from a guy I was dating at the time by watching the beginnings of Antones DVD and listening to stories as he and Nuno introduced me to greats like Erik Johnson, Kenny Wayne Sheppard, WC Clark, Hubert Sumlin, Billie Gibbons and the late GREAT Pinetop Perkins...Mr Joe Willie! We even went to Clarksdale Mississippi to see where Pinetop lived......
We went on trips to Nashville to the ICP and I learned every day about music.....
I spent every single day working for Nuno and building that company up......for 6 months......I don't think I spent one whole day away from Angie and Nuno....they wanted to fill my life with work and friendship so I wouldn't go back to that miserable marraige.....and it worked....they are two of my best friends in the orld and I would do anything for them and thier family.
Eventually Nuno and I decided that I should be off on my own so he could concentrate on his other businesses......like so many before me (and after) Nuno had done his job...he gave me a brand new life...a new beginning.....thank you so much Nuno Vasconsellos.....
So my work was cut out for me......it started off with one club on 6th st.....Blind Pig Pub...Ill never foret Ben was the GM there and asked me to hire all the bands............then the Womacks came into my life through word of mouth from Ben.......and I took on all of their clubs.....word began to spread on 6th St and today I book many of the clubs on that famous strip in Austin Texas......some weeks juggling 60 shows.......
When I moved to Maui in 2008 I was contacted by an old friend, Sonya who was working with the Boston guys.....she asked me if i would promote a concert in Hawaii for them...i said NO WAY.....i book bands iI am NOT a concert promoter! So she put me in contact with Anthony Cosmo.....and from that very first phone conversation we became like family and now I tour his band (along with Fran Cosmo) and many others contact me each day.....(oh and their shows here in Hawaii were so much fun to promote!! I plan to bring them back soon!)
My life is never dull and my illness is just a minor bump in the road....I guess I was born to love the drama......if you ever hear me complain about my job, know in my heart I am loving every second of it.....musicians remind me of those kids in middle school that I worked with for five years....remember the ones I told you about sent down on discipline?? THOSE are the ones I get along with the best! The creative ones who think outside the box.......I admire the talent.....and I love hearing their stories!
One day I hope to get somehow involved in the film industry....now THAT sounds like fun no?
My ex husband decided at age 39 (we are exactly the same age) that he was going to be a "rock star"....of course he didn't bother to share this information with me....it was only in his head......so he packed us up and sold our house in NY and his business in NY and told us we were going because I "needed to live near my family in Austin".....little did I know, the REAL reason was because he knew that Austin was the Live Music Capital of the World and he could try his hand at being the next Neil Purt....lol.....to this day in MY head every time I envision him playing those drums I am screaming "LESS IS MORE, NIMROD, LESS IS MORE" a concept way lost on him I tell you!
So there were were in January of 2011 in Leander Texas in the first house we bought in Texas while we searched for land so we could build our dream house......
That part was wonderful! We built a 4300 sq ft custom built home on 5 acres in Leander Texas and I was the General Contractor! This included a three car garage and a gorgeous wrap around porch......I searched for and ordered the blue prints, tweeked them to my specs and interviewed and hired everyone from the foundation crew to the framer to the last finisher.....and boy was it fun picking out appliances and carpeting and ceramic tiles.....even my light switches, ceiling fans, insulation.....every nail and blade of grass was carefully chosen! lol
I am proud to say while my ex husband showed up each day to drink beer with the workers, I built a house from start to finish in 4 months time! And it was gorgeous! I will forever miss that home ......he swears he helped build the house....I beg to differ! Drinking beer and slowing down every crew is not building a house....its annoying the workers! LOL
But on to the music thing...
So one day as I was sitting on the couch in my beuatiful new home, wishing my life was different and my ex husband was out in the backyard in the sound studio we built for his latest band to practice in, I decided if I didnt find a way to be part of this music thing, i would end up alone and lonlier then being in that arraige, so I picked up the phone....and I started to get his REALLY bad band booked in some of the premier places in Austin......turns out I was good at this.....
Enter Nuno and Angie......Nuno kept letting me and Angie rebook this God Aweful Band at his club and came to me one day and said "Tammy, do you know this band is the lowest ringing band ever to play in my club? yet I keep rebooking the cause I like YOU so much! Imagine if you had some real talent.......lets start a production company and you work for me!"
And so I did......Nuno sent a moving truck to move me out of that unhappy marraige and we called the production company "Handshake Productions".......Jo Hell was one of our very first clients.....and then it was Kayla Reeves (who is now touring with the Trans Siberian Orchestra all over the world!) then Sonny Wolf.....JT Coldfire...the list just goes on and on and on.....Wes Jeans! Alan Haynes......so many wonderful artists....I learned all about Blues from a guy I was dating at the time by watching the beginnings of Antones DVD and listening to stories as he and Nuno introduced me to greats like Erik Johnson, Kenny Wayne Sheppard, WC Clark, Hubert Sumlin, Billie Gibbons and the late GREAT Pinetop Perkins...Mr Joe Willie! We even went to Clarksdale Mississippi to see where Pinetop lived......
We went on trips to Nashville to the ICP and I learned every day about music.....
I spent every single day working for Nuno and building that company up......for 6 months......I don't think I spent one whole day away from Angie and Nuno....they wanted to fill my life with work and friendship so I wouldn't go back to that miserable marraige.....and it worked....they are two of my best friends in the orld and I would do anything for them and thier family.
Eventually Nuno and I decided that I should be off on my own so he could concentrate on his other businesses......like so many before me (and after) Nuno had done his job...he gave me a brand new life...a new beginning.....thank you so much Nuno Vasconsellos.....
So my work was cut out for me......it started off with one club on 6th st.....Blind Pig Pub...Ill never foret Ben was the GM there and asked me to hire all the bands............then the Womacks came into my life through word of mouth from Ben.......and I took on all of their clubs.....word began to spread on 6th St and today I book many of the clubs on that famous strip in Austin Texas......some weeks juggling 60 shows.......
When I moved to Maui in 2008 I was contacted by an old friend, Sonya who was working with the Boston guys.....she asked me if i would promote a concert in Hawaii for them...i said NO WAY.....i book bands iI am NOT a concert promoter! So she put me in contact with Anthony Cosmo.....and from that very first phone conversation we became like family and now I tour his band (along with Fran Cosmo) and many others contact me each day.....(oh and their shows here in Hawaii were so much fun to promote!! I plan to bring them back soon!)
My life is never dull and my illness is just a minor bump in the road....I guess I was born to love the drama......if you ever hear me complain about my job, know in my heart I am loving every second of it.....musicians remind me of those kids in middle school that I worked with for five years....remember the ones I told you about sent down on discipline?? THOSE are the ones I get along with the best! The creative ones who think outside the box.......I admire the talent.....and I love hearing their stories!
One day I hope to get somehow involved in the film industry....now THAT sounds like fun no?
Monday, July 11, 2011
My idea to bring to Congress......who's in?
Sometimes "The Fix" is so simple it gets easily overlooked.....to ME anyway....... it seems simple enough.....
(of course the other side of the coin is someone , or groups of someones, are getting extremely wealthy keeping "The Fix" from being implemented...you tell me)
Ponder these thoughts...
We, in this country, are suffering from a severe and utterly shameful lack of available organs for hundreds of thousands of people that are dying needlessly every year, correct?
Well lets FIX the problem...and here is my idea to make that happen!
Every child born in this country gets issued a birth certificate correct? We've all seen it...the team marches in after your glorious event and hands you a bunch of papers that you, as a responsible parent must fill out expediantely to get your child into "the system"...the social security system...the birth certificate...hell, they even give you that Gerber Life Insurance paperwork so for a mere dollar a month your child can be insured from the moment you walk out of that hospital door!
Everything is centrally computerized.....everything....the government can monitor our whereabouts with little effort....and if a draft was to be reinstituted, they would be completely prepared with the names and ages of all who qualify!
So, why not add some paperwork to that folder? The team can carry two or three extra pcs of paper I am quite sure.........Why not have the team bring in organ donor education pamphlets and give every new set of proud parents a 30 day window of time to read up on and get educated and make the big decision "Is your child going to be an organ donor??"
Simple.
Why?
Because the time to educate the misinformed American is NOT when their loved one is laying on life support and the family is so grief stricken that the last thing they want to discuss is donating their loved ones organs.....if it were ME and I had never even learned about organ donation and my child was brain dead after a massive auto accident I think I would be so unbelievably upset that I could not possibly make a rational decision....in fact, knowing me, as I do so well, I am quite sure the team would be sent out of my childs' room with such force they would need a week off to recuperate from the experience of the wrath of Tammy........
So here is my answer!
Force every American to become educated. LEARN the facts and make a decision with every child born. You will always have the right to say no at the end of that 30 days for whatever reason you deem viable....but I PROMISE you, many, many MANY people would choose YES......the shortage in this country would dissappear and like France NO ONE would be dying waiting for a transplant that didn't come to be....the time to educate is duing the happy time..the time when parents can sit together and discuss the pros and cons. The only thing mandated of them is that they make that decision by the end of 30 days and if they do NOT, the decision is made for them.....it gives a window of time for parents to object for whatever reasons they choose after reading the facts.....and I am ALL for people deciding against organ donation if that is indeed an informed , educated decision.....
(I was once told "Tammy if you have never tried Sushi, how can you possibly say you don't like it?? If you TRY the sushi and tell me you don't like the sushi then I will respect your decision and never ask again"......long story short I tried the sushi and it is now my favorite food in the world! Not quite sure how I got to be 44 yrs old never ever having eaten sushi!)
On to the next part of The Fix
Then when the child turns 18 or applies for their drivers licence, it would become their responsibility as an American to make that decision for themselves.
Again, they can decide NO.....but don't you all think this would really spread awareness and educate people on the facts, the needs, the shortage....?? I do.
Remember YOU or YOUR loved one could end up in the situation at any time where THEY are the one that needs a life saving organ......
How many people die that could have gone on to do GREAT things with their lives?
Ok off my soap box......just my idea....seems simple enough to me.....
(of course the other side of the coin is someone , or groups of someones, are getting extremely wealthy keeping "The Fix" from being implemented...you tell me)
Ponder these thoughts...
We, in this country, are suffering from a severe and utterly shameful lack of available organs for hundreds of thousands of people that are dying needlessly every year, correct?
Well lets FIX the problem...and here is my idea to make that happen!
Every child born in this country gets issued a birth certificate correct? We've all seen it...the team marches in after your glorious event and hands you a bunch of papers that you, as a responsible parent must fill out expediantely to get your child into "the system"...the social security system...the birth certificate...hell, they even give you that Gerber Life Insurance paperwork so for a mere dollar a month your child can be insured from the moment you walk out of that hospital door!
Everything is centrally computerized.....everything....the government can monitor our whereabouts with little effort....and if a draft was to be reinstituted, they would be completely prepared with the names and ages of all who qualify!
So, why not add some paperwork to that folder? The team can carry two or three extra pcs of paper I am quite sure.........Why not have the team bring in organ donor education pamphlets and give every new set of proud parents a 30 day window of time to read up on and get educated and make the big decision "Is your child going to be an organ donor??"
Simple.
Why?
Because the time to educate the misinformed American is NOT when their loved one is laying on life support and the family is so grief stricken that the last thing they want to discuss is donating their loved ones organs.....if it were ME and I had never even learned about organ donation and my child was brain dead after a massive auto accident I think I would be so unbelievably upset that I could not possibly make a rational decision....in fact, knowing me, as I do so well, I am quite sure the team would be sent out of my childs' room with such force they would need a week off to recuperate from the experience of the wrath of Tammy........
So here is my answer!
Force every American to become educated. LEARN the facts and make a decision with every child born. You will always have the right to say no at the end of that 30 days for whatever reason you deem viable....but I PROMISE you, many, many MANY people would choose YES......the shortage in this country would dissappear and like France NO ONE would be dying waiting for a transplant that didn't come to be....the time to educate is duing the happy time..the time when parents can sit together and discuss the pros and cons. The only thing mandated of them is that they make that decision by the end of 30 days and if they do NOT, the decision is made for them.....it gives a window of time for parents to object for whatever reasons they choose after reading the facts.....and I am ALL for people deciding against organ donation if that is indeed an informed , educated decision.....
(I was once told "Tammy if you have never tried Sushi, how can you possibly say you don't like it?? If you TRY the sushi and tell me you don't like the sushi then I will respect your decision and never ask again"......long story short I tried the sushi and it is now my favorite food in the world! Not quite sure how I got to be 44 yrs old never ever having eaten sushi!)
On to the next part of The Fix
Then when the child turns 18 or applies for their drivers licence, it would become their responsibility as an American to make that decision for themselves.
Again, they can decide NO.....but don't you all think this would really spread awareness and educate people on the facts, the needs, the shortage....?? I do.
Remember YOU or YOUR loved one could end up in the situation at any time where THEY are the one that needs a life saving organ......
How many people die that could have gone on to do GREAT things with their lives?
Ok off my soap box......just my idea....seems simple enough to me.....
Dont take your organs to heaven, heaven KNOWS we need them here!
Some facts about Organ Donation:
Organ Donation and Transplant
At this moment, more than 100,000 people in the U.S. are waiting for an organ. Four thousand more people are added to the national waiting list each day.
Each of these people is in desperate need of a kidney, liver, heart, or other organ. More than 6,500 people a year -- about 18 a day -- die before that organ ever becomes available.
Organ donors are always in short supply. There are far more people in need of a transplant than there are people willing to donate an organ.
Most of the organs that are available come from deceased donors. When you fill out an organ donor card with your driver's license, you're agreeing to donate all or some of your organs if you die.
A smaller number of organs come from healthy people. About 6,000 transplantsfrom living donors are performed each year.
You might have wondered about donating an organ -- either to a friend or relative who needs an organ right now, or by filling out an organ donor card. Before you decide to become an organ donor, here is some important information you need to consider.
Organ Donation: The Facts
Here are a few questions you might be asking if you're considering organ donation:
Who can donate an organ?
Just about anyone, at any age, can become an organ donor. Anyone younger than 18 needs to have the consent of a parent or guardian.
For organ donation after death, a medical assessment will be done to determine what organs can be donated. Certain conditions, such as having HIV, actively spreading cancer, or severe infection would exclude organ donation..
Do my blood and tissue type have to match the recipient's?
It's easier to transplant an organ if the donor and recipient are a good match. The transplant team will put you through a series of tests to determine whether your blood and tissue types are compatible with the recipient's.
Some medical centers can transplant an organ even if the donor's and recipient's blood and tissue types don't match. In that case, the recipient will receive special treatments to prevent his or her body from rejecting the new organ.
How can I become an organ donor?
To donate your organs after death, you can either register with your state's donor registry (visit OrganDonor.gov), or fill out an organ donor card when you get or renew your driver's license.
To become a living donor, you can either work directly with your family member or friend's transplant team, or contact a transplant center in your area to find out who's in need of an organ
If I donate an organ, will I have health problems in the future?
Not necessarily. There are some organs you can give up all or part of without having long-term health issues. You can donate a whole kidney, or part of thepancreas, intestine, liver, or lung. Your body will compensate for the missing organ or organ part. If it is determined that donating an organ would put your health at risk in the short term or long term, then you would not be able to donate.
Will I be paid for donating an organ?
No. It's illegal to pay someone for an organ. The transplant program, recipient's insurance, or recipient should cover your expenses from tests and hospital costs related to a living organ donation. The transplant program can go over what coverage is available for additional medical services. Some or all of your travel costs may also be covered.
Will organ donation after death mean I can't have an open-casket funeral?
No. The surgical incisions used for organ donation will all be closed.
Will my organ donation after death incur any costs to my family?
No. The costs of the tests and surgery related to the donation will be covered by the recipient -- most often by the recipient's insurance. Your medical care and funeral costs are paid for by your family.
Does signing a donor card have an impact on the quality of medical care I get at a hospital?
No. When you are in a life-threatening situation, the medical team that is treating you is separate from the transplant team. A maximum effort to save your life will be made before an organ donation is considered.
Pros and Cons of Organ Donation
When you're considering becoming a living organ donor, think very carefully about these pros and cons:
Pros. Probably the greatest benefit of organ donation is knowing that you're saving a life. That life might be your spouse, child, parent, brother or sister, a close friend, or a very grateful stranger.
Cons. Organ donation is major surgery. All surgery comes with risks such as bleeding, infection, blood clots, allergic reactions, or damage to nearby organs and tissues.
Although you will have anesthesia during the surgery as a living donor, you can have pain while you recover from surgery. Your pain and discomfort will vary depending on the type of surgery. And you may have visible, lasting scars from your surgery.
It will take some time for your body to recover from the surgery. You might have to miss work until you're fully healed.
Although the recipient's insurance will cover the costs of the surgery, any medical problems that develop from the transplant in the future won't be covered. Even your own health insurance policy might not cover these complications.
Should You Become an Organ Donor? Making Your Decision
As you decide whether to donate an organ as a living donor, weigh very seriously the benefits and risks of organ donation.
It's important for you to get as much information as you can before making your decision. The transplant center should fully explain the organ donation process to you. You should also be assigned an independent donor advocate who will promote your medical rights.
Make sure you ask a lot of questions throughout this process. It's important for you to fully understand the surgery and how becoming an organ donor might affect your future health.
Finally, remember that this is your decision -- yours alone. Don't let anyone sway that decision. Even if a friend or loved one is very sick, you have to consider how donating an organ might affect your own life. Remember that even though the donation process has started, you have the right to stop it at any time if you change your mind.
Understanding organ donation can make you feel better about your choice. If you've delayed your decision to be a donor because of possibly inaccurate information, here are answers to some common organ donation myths and concerns.
Why you should consider organ donation
Now that you have the facts, you can see that being an organ donor can make a big difference, and not just to one person. By donating your organs after you die, you can save or improve as many as 50 lives. And many families say that knowing their loved one helped save other lives helped them cope with their loss.
It's especially important to consider becoming an organ donor if you belong to an ethnic minority. Minorities including African-Americans, Asians and Pacific Islanders, Native Americans, and Hispanics are more likely than whites to have certain chronic conditions that affect the kidney, heart, lung, pancreas and liver. Certain blood types are more prevalent in ethnic minority populations. Because matching blood type is necessary for transplants, the need for minority donor organs is especially high.
25 Facts About Organ Donation and Transplantation
The success rates of transplant surgery have improved remarkably, but growing shortages exist in the supply of organs and tissues available for transplantation. Many Americans who need transplants cannot get them because of these shortages. The result: some of these people die while waiting for that "Gift of Life."
Each year, the National Kidney Foundation develops special public education programs aimed at increasing public awareness of the need for organ and tissue donation. Learning more about organ and tissue donation will help every American to make an informed decision about this important issue. Here are some facts everyone should know:
- 104,748 U.S. patients are currently waiting for an organ transplant; more than 4,000 new patients are added to the waiting list each month.
- Every day, 18 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.
- Because of the lack of available donors in this country, 4,573 kidney patients, 1,506 liver patients, 371 heart patients and 234 lung patients died in 2008 while waiting for life-saving organ transplants.
- Nearly 10 percent of the patients currently waiting for heart transplants are young people under 18 years of age.
- Acceptable organ donors can range in age from newborn to 65 years or more. People who are 65 years of age or older may be acceptable donors, particularly of corneas, skin, bone and for total body donation.
- An estimated 12,000 people who die each year meet the criteria for organ donation, but less than half of that number become actual organ donors.
- Donor organs are matched to waiting recipients by a national computer registry, called the National Organ Procurement and Transplantation Network (OPTN). This computer registry is operated by an organization known as the United Network for Organ Sharing (UNOS), which is located in Richmond, Virginia.
- Currently there are 58 organ procurement organizations (OPOs) across the country, which provide organ procurement services to 250 transplant centers.
- All hospitals are required by law to have a "Required Referral" system in place. Under this system, the hospital must notify the local Organ Procurement Organization (OPO) of all patient deaths. If the OPO determines that organ and/or tissue donation is appropriate in a particular case, they will have a representative contact the deceased patient’s family to offer them the option of donating their loved one’s organs and tissues.
- By signing a Uniform Donor Card, an individual indicates his or her wish to be a donor. However, at the time of death, the person's next-of-kin will still be asked to sign a consent form for donation. It is important for people who wish to be organ and tissue donors to tell their family about this decision so that their wishes will be honored at the time of death.
- All costs related to the donation of organs and tissues are paid for by the donor program. A family who receives a bill by mistake should contact the hospital or procurement agency immediately.
- Tissue donation can enhance the lives of more than 50 people. Donated heart valves, bone, skin, corneas and connective tissues can be used in vital medical procedures such as heart valve replacements, limb reconstruction following tumor surgery, hip and knee joint reconstruction and in correcting curvature of the spine.
- In 2008, a total of 14,208 organ donors were recovered in the U.S. Of these, 7,990 were cadaveric donors, which represented a decrease over the total of 8,019 in 2006. Living donors decreased from 6,732 in 2006 to 6,218 in 2008.
- Donor organs and tissues are removed surgically, and the donor’s body is closed, as in any surgery. There are no outward signs of organ donation and open casket funerals are still possible.
- Acceptable organ donors are those who are "brain dead" (whose brain function has ceased permanently) but whose heart and lungs continue to function with the use of ventilators. Brain dead is a legal definition of death.
- Organ transplant recipients are selected on the basis of medical urgency, as well as compatibility of body size and blood chemistries, and not race, sex or creed.
- Advances in surgical technique and organ preservation and the development of more effective drugs to prevent rejection have improved the success rates of all types of organ and tissue transplants.
- About 94.4 percent of the kidneys transplanted from cadavers (persons who died recently) are still functioning well at one year after surgery.
- The results are even better for kidneys transplanted from living donors. One year after surgery, 97.96 percent of these kidneys were still functioning well.
- Following are one-year patient and organ graft survival rates:
- Following is a comparison of the numbers of organ transplants done in 2008 and the numbers of individuals who are on the national waiting list as of November 2009.
- Of the 13,156 single kidney transplants performed in 2008, 5,968 were from living donors and the rest were from cadaveric donors. In addition, 837 kidneys were transplanted in combination with pancreas transplants.
- Over 2,500 bone marrow transplants were performed in the U.S. in 2004. Marrow is collected from a pelvic bone using a special needle while the volunteer donor is under anesthesia. The majority of bone marrow transplants are done for leukemia.
- In the United States fewer than 2.5% of patients with end-stage kidney disease undergo transplantation as their first treatment or therapy. The National Kidney Foundation is dedicated to educating kidney patients about the benefits of pre-emptive transplantation - when a person is able to go straight to transplant without dialysis they usually have good health outcomes.
- 2008 was the first time in 20 years that there was a decline in the number of deceased donors used for transplants. Living donors in 2008 were at their lowest numbers since 2001.
- Virtually all religious denominations approve of organ and tissue donation as representing the highest humanitarian ideals and the ultimate charitable act
| Organ |  | Patient Survival Rate | | Graft Survival Rate |
| Kidney (cadaveric) Kidney (live donor) Liver | 94.4% 97.9% 90.1% | 89.0% 95.1% 82.0% |
| Organ | | Number of Transplants in 2008 | | Number of Patients on Waiting List* (of November 2009) |
| Kidney Kidney/Pancreas Pancreas Liver Heart Heart/lung Lung Intestine Total: | 16,520 837 436 6,319 2,163 27 1,478 185 27,965 | 82,364 2,220 1,488 15,915 2,884 83 1,863 229 107,046 |
Sunday, July 10, 2011
Fact from Fiction and setting some things straight
My biggest pet peeve is those who spread rumors knowing full well they have no clue what they are talking about.....don't you hate that? Nothing worse then not being able to trust a person and this makes me mistrust the most.
Hey Charlie, why does the world hate Casey Anthony? "oh because she killed her kid and then went to the mall to shop and bought herself a Tiffany necklace with winnings from the lotto that she also used to pay off the judge and the police department OH and did you know that Angelina Jolie is slated to play her in the film they have in the works??? Yep and She will make a whopping 75 million for her story in People mag too....oh and Brad and Emily are hiding out in a cave in San Juan Del Sur in Nicaragua pretending to be broken up too!"
Grrrrr.....can someone shoot Charlie for me please? Don't kill him....just in the butt with a sling shot and a bb gun will work.....enough to put him in the hospital for a few days with a laptop and a tutor to learn how to look up "facts"......
I was raised to believe that a true sign of intelligence is admitting you don't have all the answers but knowing how to find out.....research.....investigation.....the internet gives us the greatest tool there is to find out EVERYTHING we could ever want to know these days, so to ME, there is no excuse for such ignorance. (that and I hate when religious zealots spread the word all the while talking behind everyones backs, lying, spreading rumors and spouting about how the end of the world is coming and those who don't believe in THEIR beliefs will burn in a firey hell for eternity! God help the Gay people! LOL)
I taught my kids by example......if I didn't know the answer I told them so and we looked it up. (I also taught them tolerance for ALL people and there isn't a racist or biggoted or superior bone in not one of their bodies!) My kids definitely have their faults but they are avid researchers and it is virtually impossible for them to even see sexual preference or color....they simply do not even notice.....(oh and they grew up loving classic rock and were at concerts at very early ages! Im proud to say that my kids love the arts and music! In fact, my two youngest sat in the third row of a Simon and Garfunkel concert in Austin in elementary school and stood up dancing and singing all the words the entire time when most kids in their classes said "Simon and WHO??" lol)
Here are some FAQs
FIRST:
PLEASE STOP MISTAKING MY ILLNESS FOR HEP C OR HIV!!!! WHAT I DO HAVE COULDN'T BE FARTHER FROM BOTH OF THOSE!
Hep C is NOT even CLOSE to what I have.
Let me explain.
The word "hepatitis" simply means inflamation of some sort in the liver......(and I encourage you to look it up if you don't believe me).........the letter beside it or the word beside it explains the REASON the liver in enflamed.
Hep C is a viral, contagious condition. One where something foreign entered the body...usually through tainted blood, bodily secretions, dirty needles......
Automimmune Hepatitis is a condition where ones immune system is confused and attacks healthy tissue. It is genetic (not hereditary) and nothing one can do causes it....not a drink, nor a needle, nor sex....none of that causes an Autoimune system to overreact. It just is bad luck of the draw......(have I mentioned I have never been lucky?)
This is also the exact OPPOSITE of HIV.
Patients with HIV have an immune system that is broken down....it is weak...it cannot fight off infection.
People with Autoimmune Disorders have OVERACTIVE, STRONG, FIGHTING immune systems.....allow me to explain in elementary school language for a moment as this is how I actually learned...
Our immune systems are built into our bodies and are in place for this reason......they are like soldiers to fight off infection. When we get sick the soldiers ban together stand up and FIGHT....hence the white blood cell count rises considerably. They dont stop until the infection is gone....usually with the help of antibiotics unless it is viral then they fight alone......
When one has an Autoimmune Disorder (and there are many, many, MANY of these) the built in Immune system is always in "fight mode"....it is always fighting off what it thinks is infection or bad cells when in reality it is fighting and killing healthy tissue. That is what is happening to me. There is no cure because they don't understand why the immune system gets confused. there is only treatment used to slow this process. (in my case I am allergic to it....remembering how UNLUCKY I am!)
My confused immune system has attacked my gall bladder (its since been removed), my espohagus (major sugery at the Mayo Clinic in Minnesota in 2005) and my liver......along with its bile ducts....it has slowly, systematically attacked the healthy tissue that was once my liver and has made it a scarred organ that looks shriveled up and dead....necrosis is the death of cells.....necrosis is all over my liver.....necrosis is irreversable. The only "cure" at this point is a liver transplant. They put a stent in last year that helps the blood flow through it and stopped the middle of the night variceal bleeds but this stent 9aka TIPS Procedure) also speeded up the process of the disease progression.....this illness is all about weighing the odds....which is the worst or lesser of the two evils is usually the way it is.....
There have been times in my past that ignorant medical personel have been the ones to "mistakenly" confuse my condition with Hep C patients....this PISSES ME OFF.
Once I was in the hospital in New York and on the ride down to MRI, I (as I ALWAYS do as YOU should TOO) grabbed my chart to read it. (not an orderly or nurse alive can keep ME from reading my own records!)
The first time I saw a note that said "patient with Hep c..." I blew a fit! I did not stop until the resident who wrote those notes was in my hospital room explaining why she inadvertantly wrote the WRONG diagnosis on MY medical chart....do you know what her dumbass answer was???? Oh, most of our patients have Hep C so i just assumed...."
(BE YOUR OWN MEDICAL ADVOCATE AS NO ONE ELSE WILL CARE ENOUGH ABOUT YOU TO BE THAT! YOU HAVE THE RIGHT TO DICTATE YOUR COURSE OF ACTION, YOUR MEDCIAL CARE IS IN YOUR HANDS. QUESTION EVERYTHING THEY DO! IT IS THEIR JOB TO ANSWER TO YOU EVEN IF THEY ACT LIKE YOU ARE BOTHERING THEM....THEY WILL GROW TO RESPECT YOU EVEN IF THEY ARE ANNOYED BY YOU)
ok back to my story of the imbecile who wrote the wrong diagnosis......(slap me when I get on my soapbox!)
I screamed at that woman (Im sure to this day she remembers me and hasn't made THAT mistake again! To GET THAT MISDIAGNOSIS OFF MY CHART IMMEDIATELY AND OUT OF MY MEDICAL RECORDS BEFORE IT GETS ENTERED INTO A COMPUTER SOMEWHERE!
This also happened to me with a dentist who had zero clue what autoimmune meant......and way too may promary care physicians who asked ME what labs to run since they had no clue.......
I have been seen by WAY too many specialists to count. If I am anything , I am thorough......denial can do some strange things to a person like me....I have been seen by the greatest in Hepatology in New York, Texas (Dallas, Austin, San Antonio AND Houston.....lol), Mayo Clinic in Minnesota, and the "Wizard" as he is known in the medical world, Dr Al Czaia, from Europe who wrote the studies on what I have not only evaluated my records but I flew to see him and it was then and only then that I think it began to sink in that maybe it wasn't all a big lie......I really have this illness. He loved that I was my own advacate...we even took pictures and I have remained in contact with him periodically throughout the years. Many specialsts have told me over the years that he uses my case in discussions and at conferences.......lol.....seriously!
Al told me the othe doctors did miss something though.....not only did I have Autoimmune Hepatitis but I had the over lap of the two other autoimmune liver diseases as well....PBC AND PSC.......YAY ME! Im a freak of nature!
He also introduce me to a leading Esophageal specialist from Scotland.......he ran tests and determined that "BY GOSH!" (his words lol) I was the ONLY person he had met that the immune system was attacking the esophagus as well! He was so thrilled and intruigued by me!
He authorized the surgery so I could swallow again and then said if this comes back in the next few months he will have been RIGHT and please please come back to Mayo in March so I can do a study on you! (I wish I could type like his Scottish accent...it was pretty funny and cool)
He was indeed correct but I didn't go back.....I instead sent him a postcard from Scotland when I went with my son who was starring in Paganini at the Edinburough Fringe Festival at the Churchill Theatre! I remember telling him his country was beautiful but I was not going to particiapte in any studies that I was finished being the "sick one".....he wrote me back and asked me to please change my mind and if I did to contact him.....then he asked me if I ate something that escapes me now whie I was there in his hometown!
No one wants to be that case....no one....especially not me.....
Right after I got home from my surgery in Minnesota I stopped all meds and left my ex husband and dove head first into my new career.........work.....work....work....men...men....men...work ....work....men....lol...more men and more work......
I decided life was to be lived and no one would know ever again that I was sick and from the year 2006 until that dreaded day this past March of 2011 MOST people had no clue at all of my illness....just a few chosen VERY close friends and of course my family......I was deteremined NEVER to have to explain to anyone again the differences betweenAlcoholic cirrhosis and what I have...and Hep C and what I have....when I ended up in all those hospital stays I would say things like "Oh I had pneumonia" or something equally as simple......I didn't want anyone to know....and I was pretty sucessful at hiding it for a long time.....
I decided Id rather have a shorter life of quality than a longer life filled with medical crap every single day......
March of this past year during the world biggest music festival SXSW changed EVERYTHING......when Dr Poreddy sat me down after I had just missed the festival due to yet another long hospital stay he said to me....."you KNOW what i am going to say.....you KNOW this Tammy"
I asked...."how long do I have?"...he said "Several months to a year at best without a transplant. We need to get you relisted as soon as possible and get this insurance mess straightened out"
He then went on to tell me that I have progressed to an advanced Stage 4...this stage is called End Stage.....
Hey Charlie, why does the world hate Casey Anthony? "oh because she killed her kid and then went to the mall to shop and bought herself a Tiffany necklace with winnings from the lotto that she also used to pay off the judge and the police department OH and did you know that Angelina Jolie is slated to play her in the film they have in the works??? Yep and She will make a whopping 75 million for her story in People mag too....oh and Brad and Emily are hiding out in a cave in San Juan Del Sur in Nicaragua pretending to be broken up too!"
Grrrrr.....can someone shoot Charlie for me please? Don't kill him....just in the butt with a sling shot and a bb gun will work.....enough to put him in the hospital for a few days with a laptop and a tutor to learn how to look up "facts"......
I was raised to believe that a true sign of intelligence is admitting you don't have all the answers but knowing how to find out.....research.....investigation.....the internet gives us the greatest tool there is to find out EVERYTHING we could ever want to know these days, so to ME, there is no excuse for such ignorance. (that and I hate when religious zealots spread the word all the while talking behind everyones backs, lying, spreading rumors and spouting about how the end of the world is coming and those who don't believe in THEIR beliefs will burn in a firey hell for eternity! God help the Gay people! LOL)
I taught my kids by example......if I didn't know the answer I told them so and we looked it up. (I also taught them tolerance for ALL people and there isn't a racist or biggoted or superior bone in not one of their bodies!) My kids definitely have their faults but they are avid researchers and it is virtually impossible for them to even see sexual preference or color....they simply do not even notice.....(oh and they grew up loving classic rock and were at concerts at very early ages! Im proud to say that my kids love the arts and music! In fact, my two youngest sat in the third row of a Simon and Garfunkel concert in Austin in elementary school and stood up dancing and singing all the words the entire time when most kids in their classes said "Simon and WHO??" lol)
Here are some FAQs
FIRST:
PLEASE STOP MISTAKING MY ILLNESS FOR HEP C OR HIV!!!! WHAT I DO HAVE COULDN'T BE FARTHER FROM BOTH OF THOSE!
Hep C is NOT even CLOSE to what I have.
Let me explain.
The word "hepatitis" simply means inflamation of some sort in the liver......(and I encourage you to look it up if you don't believe me).........the letter beside it or the word beside it explains the REASON the liver in enflamed.
Hep C is a viral, contagious condition. One where something foreign entered the body...usually through tainted blood, bodily secretions, dirty needles......
Automimmune Hepatitis is a condition where ones immune system is confused and attacks healthy tissue. It is genetic (not hereditary) and nothing one can do causes it....not a drink, nor a needle, nor sex....none of that causes an Autoimune system to overreact. It just is bad luck of the draw......(have I mentioned I have never been lucky?)
This is also the exact OPPOSITE of HIV.
Patients with HIV have an immune system that is broken down....it is weak...it cannot fight off infection.
People with Autoimmune Disorders have OVERACTIVE, STRONG, FIGHTING immune systems.....allow me to explain in elementary school language for a moment as this is how I actually learned...
Our immune systems are built into our bodies and are in place for this reason......they are like soldiers to fight off infection. When we get sick the soldiers ban together stand up and FIGHT....hence the white blood cell count rises considerably. They dont stop until the infection is gone....usually with the help of antibiotics unless it is viral then they fight alone......
When one has an Autoimmune Disorder (and there are many, many, MANY of these) the built in Immune system is always in "fight mode"....it is always fighting off what it thinks is infection or bad cells when in reality it is fighting and killing healthy tissue. That is what is happening to me. There is no cure because they don't understand why the immune system gets confused. there is only treatment used to slow this process. (in my case I am allergic to it....remembering how UNLUCKY I am!)
My confused immune system has attacked my gall bladder (its since been removed), my espohagus (major sugery at the Mayo Clinic in Minnesota in 2005) and my liver......along with its bile ducts....it has slowly, systematically attacked the healthy tissue that was once my liver and has made it a scarred organ that looks shriveled up and dead....necrosis is the death of cells.....necrosis is all over my liver.....necrosis is irreversable. The only "cure" at this point is a liver transplant. They put a stent in last year that helps the blood flow through it and stopped the middle of the night variceal bleeds but this stent 9aka TIPS Procedure) also speeded up the process of the disease progression.....this illness is all about weighing the odds....which is the worst or lesser of the two evils is usually the way it is.....
There have been times in my past that ignorant medical personel have been the ones to "mistakenly" confuse my condition with Hep C patients....this PISSES ME OFF.
Once I was in the hospital in New York and on the ride down to MRI, I (as I ALWAYS do as YOU should TOO) grabbed my chart to read it. (not an orderly or nurse alive can keep ME from reading my own records!)
The first time I saw a note that said "patient with Hep c..." I blew a fit! I did not stop until the resident who wrote those notes was in my hospital room explaining why she inadvertantly wrote the WRONG diagnosis on MY medical chart....do you know what her dumbass answer was???? Oh, most of our patients have Hep C so i just assumed...."
(BE YOUR OWN MEDICAL ADVOCATE AS NO ONE ELSE WILL CARE ENOUGH ABOUT YOU TO BE THAT! YOU HAVE THE RIGHT TO DICTATE YOUR COURSE OF ACTION, YOUR MEDCIAL CARE IS IN YOUR HANDS. QUESTION EVERYTHING THEY DO! IT IS THEIR JOB TO ANSWER TO YOU EVEN IF THEY ACT LIKE YOU ARE BOTHERING THEM....THEY WILL GROW TO RESPECT YOU EVEN IF THEY ARE ANNOYED BY YOU)
ok back to my story of the imbecile who wrote the wrong diagnosis......(slap me when I get on my soapbox!)
I screamed at that woman (Im sure to this day she remembers me and hasn't made THAT mistake again! To GET THAT MISDIAGNOSIS OFF MY CHART IMMEDIATELY AND OUT OF MY MEDICAL RECORDS BEFORE IT GETS ENTERED INTO A COMPUTER SOMEWHERE!
This also happened to me with a dentist who had zero clue what autoimmune meant......and way too may promary care physicians who asked ME what labs to run since they had no clue.......
I have been seen by WAY too many specialists to count. If I am anything , I am thorough......denial can do some strange things to a person like me....I have been seen by the greatest in Hepatology in New York, Texas (Dallas, Austin, San Antonio AND Houston.....lol), Mayo Clinic in Minnesota, and the "Wizard" as he is known in the medical world, Dr Al Czaia, from Europe who wrote the studies on what I have not only evaluated my records but I flew to see him and it was then and only then that I think it began to sink in that maybe it wasn't all a big lie......I really have this illness. He loved that I was my own advacate...we even took pictures and I have remained in contact with him periodically throughout the years. Many specialsts have told me over the years that he uses my case in discussions and at conferences.......lol.....seriously!
Al told me the othe doctors did miss something though.....not only did I have Autoimmune Hepatitis but I had the over lap of the two other autoimmune liver diseases as well....PBC AND PSC.......YAY ME! Im a freak of nature!
He also introduce me to a leading Esophageal specialist from Scotland.......he ran tests and determined that "BY GOSH!" (his words lol) I was the ONLY person he had met that the immune system was attacking the esophagus as well! He was so thrilled and intruigued by me!
He authorized the surgery so I could swallow again and then said if this comes back in the next few months he will have been RIGHT and please please come back to Mayo in March so I can do a study on you! (I wish I could type like his Scottish accent...it was pretty funny and cool)
He was indeed correct but I didn't go back.....I instead sent him a postcard from Scotland when I went with my son who was starring in Paganini at the Edinburough Fringe Festival at the Churchill Theatre! I remember telling him his country was beautiful but I was not going to particiapte in any studies that I was finished being the "sick one".....he wrote me back and asked me to please change my mind and if I did to contact him.....then he asked me if I ate something that escapes me now whie I was there in his hometown!
No one wants to be that case....no one....especially not me.....
Right after I got home from my surgery in Minnesota I stopped all meds and left my ex husband and dove head first into my new career.........work.....work....work....men...men....men...work ....work....men....lol...more men and more work......
I decided life was to be lived and no one would know ever again that I was sick and from the year 2006 until that dreaded day this past March of 2011 MOST people had no clue at all of my illness....just a few chosen VERY close friends and of course my family......I was deteremined NEVER to have to explain to anyone again the differences betweenAlcoholic cirrhosis and what I have...and Hep C and what I have....when I ended up in all those hospital stays I would say things like "Oh I had pneumonia" or something equally as simple......I didn't want anyone to know....and I was pretty sucessful at hiding it for a long time.....
I decided Id rather have a shorter life of quality than a longer life filled with medical crap every single day......
March of this past year during the world biggest music festival SXSW changed EVERYTHING......when Dr Poreddy sat me down after I had just missed the festival due to yet another long hospital stay he said to me....."you KNOW what i am going to say.....you KNOW this Tammy"
I asked...."how long do I have?"...he said "Several months to a year at best without a transplant. We need to get you relisted as soon as possible and get this insurance mess straightened out"
He then went on to tell me that I have progressed to an advanced Stage 4...this stage is called End Stage.....
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