I generally do not watch TV talk shows. Comedies, news, history, science, and travel channels, yes - but I usually click right past talk shows. Turned on the tube today to tune into the news and Oprah was on. First words I heard before I hit the clicker was "transplant", so I froze.
Today, the parents of a young man killed in a tragic accident were sharing their story on Oprah's show. Follow this link to Oprah's website starting with slide 8 and watch through slide 14. These slides are telling you about the journey Jason Ray's parents have taken since they honored Jason's wishes and donated his organs and how hard the decision was for them to make even knowing Jason's wishes. In their case, they wanted to meet the recipients, 3 of whom were also on the show. This segment ends with Dr. Oz coming out to talk to Oprah about transplantation in general. I never, ever, in my wildest dreams imagined that a segment of a syndicated, daytime talkshow could make me cry, but this one did.
This story was well presented on the show and there are links to additional information on Oprah's website. I don't know if seeing the pictures and reading the dialog will have the same effect as seeing the actual film, but it would take a very hard person not to be affected by these people. I honestly don't think I would have the courage this young man's parents have shown in presenting their story to the world or the courage it took for the recipients to appear; but I do know that it was a show worth seeing.
Part of the reason for me writing this blog is so I never lose the link to this show. I hope that anyone that reads this is touched by it as powerfully as I was.
31 January 2008
30 January 2008
Different Views
Having someone go through something major like a transplant seems to be a similar, but very different experience for everyone. I knew that was true from the patent's/family point of view, but it appears to be so from the different health care professionals points of view as well.
Our experience with our personal health care providers has been cautious, but positive. Our family doctor, our dentist, and our gastroenterologist, have all wanted to ensure that everything is at least coordinated with the transplant team. We just presumed this would be the attitude of all medical professionals.
When my husband, on a weekend naturally, suddenly developed signs of dental infection; our dentist and the transplant team ensured he received the appropriate antibiotic. Both made sure we kept them apprised of how the symtoms reacted to the antibiotic. The dentist saw us first thing Monday morning for X-rays, formulated a plan that was presented to the transplant team, who concurred. I perceived that taking care of Allen was everyone's first priorty and never even thought that professional ego was involved in any way. I didn't even think about this being anything except the way that caring healthcare professionals act.
However, yesterday, I heard of a different reaction from another transplant patient's health care profesisonals in a neighboring town. (Don't believe the location of the doctor' is the issue, could have been others here in our area just as easily.) Our friend's husband suddenly developed some fairly serious complications, serious enough for hospital admission. When our friends requested they be transferred to the transplant center, they perceived their doctor took offense, stating he could take care of this issue at this local hospital.
I am truly hoping that, given the stress that everyone was under, this was a mistaken perception. Transplant patients take very powerful anti-rejection drugs, so events occur suddently. These patients also react differently to treatment than otherwise healthy patients do.
This is not the time for egos to stand in the way of patient care.
Our experience with our personal health care providers has been cautious, but positive. Our family doctor, our dentist, and our gastroenterologist, have all wanted to ensure that everything is at least coordinated with the transplant team. We just presumed this would be the attitude of all medical professionals.
When my husband, on a weekend naturally, suddenly developed signs of dental infection; our dentist and the transplant team ensured he received the appropriate antibiotic. Both made sure we kept them apprised of how the symtoms reacted to the antibiotic. The dentist saw us first thing Monday morning for X-rays, formulated a plan that was presented to the transplant team, who concurred. I perceived that taking care of Allen was everyone's first priorty and never even thought that professional ego was involved in any way. I didn't even think about this being anything except the way that caring healthcare professionals act.
However, yesterday, I heard of a different reaction from another transplant patient's health care profesisonals in a neighboring town. (Don't believe the location of the doctor' is the issue, could have been others here in our area just as easily.) Our friend's husband suddenly developed some fairly serious complications, serious enough for hospital admission. When our friends requested they be transferred to the transplant center, they perceived their doctor took offense, stating he could take care of this issue at this local hospital.
I am truly hoping that, given the stress that everyone was under, this was a mistaken perception. Transplant patients take very powerful anti-rejection drugs, so events occur suddently. These patients also react differently to treatment than otherwise healthy patients do.
This is not the time for egos to stand in the way of patient care.
28 January 2008
Donor/Recipient Perspectives
My friend and mentor, Simple Country Physicist, has hit the nail on the head in his recent post, Memory Taxidermy, I believe. Organ donation is a very personal matter and perception of how and what it involves greatly influences your decision.
Before we (and being the recipient or the donor involves and affects the entire family) went through the liver transplant procedure, I never really gave it more than a passing thought, which was pretty much: I won't need that stuff any longer, if I have anything that can help someone else, let them have it. I checked the box on my driver's license, put it in my living will, told my husband, and didn't think about it any more.
The transplant process has me looking at things in a whole new light. Some of it, from an insurance perspective, is negative. See previous blog entry for more on that subject
Most of it, from a personal perspective, is extremely positive and makes me want to help spread the word.
The doctors, nurses, everyone on the transplant team, care as much for the donor families as they do for the recipient families. Everyone is treated with respect. The transplant center we went to encourages the recipients to write a letter to the donor family expressing their thanks and letting them know how their unselfishness has affected the recipient and his/her family. I sat down to write that letter and it was one of the hardest things in the world I've ever tried to write.
One of our daughters pretty much summed up everything at Christmas. Trying to decide what to get us for Christmas, she asked, "what in the world do you get someone who has received the best gift possible - a new life"? I took that thought and expounded on it; hopefully the donor family will understand how we feel and in turn, maybe help with their grief.
My thoughts have changed in context a bit:
When it is my time to go, then I truly hope that my organs can help someone else to live or have a better quality of life. It is no longer just a check box on the driver's license application.
Before we (and being the recipient or the donor involves and affects the entire family) went through the liver transplant procedure, I never really gave it more than a passing thought, which was pretty much: I won't need that stuff any longer, if I have anything that can help someone else, let them have it. I checked the box on my driver's license, put it in my living will, told my husband, and didn't think about it any more.
The transplant process has me looking at things in a whole new light. Some of it, from an insurance perspective, is negative. See previous blog entry for more on that subject
Most of it, from a personal perspective, is extremely positive and makes me want to help spread the word.
The doctors, nurses, everyone on the transplant team, care as much for the donor families as they do for the recipient families. Everyone is treated with respect. The transplant center we went to encourages the recipients to write a letter to the donor family expressing their thanks and letting them know how their unselfishness has affected the recipient and his/her family. I sat down to write that letter and it was one of the hardest things in the world I've ever tried to write.
One of our daughters pretty much summed up everything at Christmas. Trying to decide what to get us for Christmas, she asked, "what in the world do you get someone who has received the best gift possible - a new life"? I took that thought and expounded on it; hopefully the donor family will understand how we feel and in turn, maybe help with their grief.
My thoughts have changed in context a bit:
When it is my time to go, then I truly hope that my organs can help someone else to live or have a better quality of life. It is no longer just a check box on the driver's license application.
27 January 2008
American Sign Language
Our youngest grandchild is deaf. In her 5 years, she has endured quite a lot including two surgeries to have cochlear implants. She is also learning American Sign Language at her school, so, wanting to communicate with my granddaughter more effectively, I began searching for classes available in our area. Most of the ones I have found have been full with long waiting lists, however, I ran across this wonderful website, American Sign Language Resource Site. This site is a great resource to help you learn yourself, practice tests, great visuals, lots of information, etc., etc.
The author, Dr. Bill Vicars, has given his permission to link to his site for reference (in fact, I got the linkback code from the website).
I plan to get on one of the waiting lists for an instructor led class; but intend to make full use of the referenced site in the meantime. Dr. Vicars has obviously spent a lot of time to provide this resource to everyone, so I wanted to help spread the word about its availability.
The author, Dr. Bill Vicars, has given his permission to link to his site for reference (in fact, I got the linkback code from the website).
I plan to get on one of the waiting lists for an instructor led class; but intend to make full use of the referenced site in the meantime. Dr. Vicars has obviously spent a lot of time to provide this resource to everyone, so I wanted to help spread the word about its availability.
Organ Donations Revisited
Partially because of Ms. Demi-Lee Brennan, from Sydney, Australia and her amazing story, my mind was truly racing this morning about the possiblities and the miracles of modern medicine.
It also reminded me I have been remiss in thanking the donor family (see previous post here for refresher) of my husband's new liver. I spent most of this morning composing the letter and found that this was a much more emotional and difficult letter to write than I expected it to be.
It has made me aware, once again, of the importance of becoming an organ donor. As I mentioned before, even blood veins, skin, blood itself, just about everything, if viable, can help someone else to live.
The Legacy Organ and Tissue Registry, a division of the Alabama Organ Center has very good information on it, even if you are not an Alabama resident. I have learned that even if you have designated on your driver's license that you wish to be an organ donor, this registry is still a vital, important thing to do.
It also reminded me I have been remiss in thanking the donor family (see previous post here for refresher) of my husband's new liver. I spent most of this morning composing the letter and found that this was a much more emotional and difficult letter to write than I expected it to be.
It has made me aware, once again, of the importance of becoming an organ donor. As I mentioned before, even blood veins, skin, blood itself, just about everything, if viable, can help someone else to live.
The Legacy Organ and Tissue Registry, a division of the Alabama Organ Center has very good information on it, even if you are not an Alabama resident. I have learned that even if you have designated on your driver's license that you wish to be an organ donor, this registry is still a vital, important thing to do.
Please remember to make your wishes known to your family. If you have children, hard as this may be, please decide what you want to do in the terrible event that something happens to them. This is a hard thing to think about, but the reason I say this is:
One thing I saw, that will stick with me forever, was as a child was dying, the mother and father got into a horrible, loud, fight over whether to donate the child's organs or not. This was such a terrible thing to have happen and one of the parents was actually arrested. I do not know what the ultimate decision was about the transplant. I do suspect that, on top of losing their child, this couple also lost their marriage. A catastrophe all the way around, which possibly could have been prevented by a difficult talk years earlier.
There are several good sites out here for information on organ donation, not just liver transplants.
One of the is Organ and Tissue Donation Initative.
The University of AL - Birmingham Liver Center has recently stood up a website that I believe will get better over time.
20 January 2008
Health Insurance Woes
There is a great article in Parade magazine today (http://www.parade.com/articles/editions/2008/edition_01-20-2008/Fight_for_Your_Health_Care). It has a lot of helpful information in it.
As noted previously, my husband and I have been to lots of doctors and hospitals recently as he is a recent liver transplant recipient. Thank God for the miracles of modern medicine.
Now, the subject of health insurance is another matter entirely. Dealing with these people has been the most stressful part of this whole transplant. I believe, with all my heart, that these people "deny all, permit by exception" in computer geek terminology.
I do have to admit the insurance company, by causing the stress that they did, helped alleviate much of the stress of dealing with the transplant need itself, the evaluation, the waiting, and ultimately the transplant itself. The insurance company was, and continues to be, MUCH more stressful.
If you happen to have doctors that don't have the staff to help you deal with these folks, then you're pretty much out of luck unless you can afford a lawyer or, as noted in the article, obtain help from an advocacy group.
To start with, this company denied the initial 11 day hospital stay for this man. We arrived home to a letter waiting for us that said denial of claim. When I called the number provided to find out why, I was told they couldn't provide that information to us; the hospital would have to contact them. (No good response to the question of why they provided a phone number for help if they weren't going to provide any help.) So I called the hospital billing office, who called the insurance company, who said, no, since the claim was denied, we need for the doctor to contact us to go over, line item by line item, all of these charges. Yes, we were probably wrong to deny this claim, but procedures you know. Hospital calls me to tell me what the insurance company said and to get me to call the doctor. Turns out that, indeed, after the nurse practitioner finally got in touch with the proper person at the insurance company (took several days, the insurance company is busy after all) and spent over an hour going over the bill line item by line item, that indeed, the insurance company could pay this bill.
Some version of the above has occurred with every single claim that has been filed since August 2007, including the necessary prescription drugs. Turns out the prescriptions are covered, there just happens to be 3 different divisions that the prescriptions have to go to and guess who is magically supposed to know what to send to who? All of these divisions are part of the same company, but apparently do not know how to, or won't, communicate with each other. Procedures, you know.
We were called 3 times to come to the transplant center for the surgery. The first 2 times we were sent back home after preparation for the surgery. Stressful enough, right? Wrong. Insurance company denied these claims. Guess they thought we made these trips for the fun of it.
Finally, after 5 months of trying to obtain help from the company, it turns out that if you complain enough, you get assigned a patient coordinator. The patient coordinator got all of the denied claims taken care of and has been great help with every other issue that has come up. While I appreciate this person very much, I will be contacting state and federal government officials to see what I can do to help change these practices. From stories I've heard, I actually made progress much faster than most folks.
"Deny all, permit by exception" is a great concept for computer network security; it is not even close to a mediocre concept for health care benefits.
As noted previously, my husband and I have been to lots of doctors and hospitals recently as he is a recent liver transplant recipient. Thank God for the miracles of modern medicine.
Now, the subject of health insurance is another matter entirely. Dealing with these people has been the most stressful part of this whole transplant. I believe, with all my heart, that these people "deny all, permit by exception" in computer geek terminology.
I do have to admit the insurance company, by causing the stress that they did, helped alleviate much of the stress of dealing with the transplant need itself, the evaluation, the waiting, and ultimately the transplant itself. The insurance company was, and continues to be, MUCH more stressful.
If you happen to have doctors that don't have the staff to help you deal with these folks, then you're pretty much out of luck unless you can afford a lawyer or, as noted in the article, obtain help from an advocacy group.
To start with, this company denied the initial 11 day hospital stay for this man. We arrived home to a letter waiting for us that said denial of claim. When I called the number provided to find out why, I was told they couldn't provide that information to us; the hospital would have to contact them. (No good response to the question of why they provided a phone number for help if they weren't going to provide any help.) So I called the hospital billing office, who called the insurance company, who said, no, since the claim was denied, we need for the doctor to contact us to go over, line item by line item, all of these charges. Yes, we were probably wrong to deny this claim, but procedures you know. Hospital calls me to tell me what the insurance company said and to get me to call the doctor. Turns out that, indeed, after the nurse practitioner finally got in touch with the proper person at the insurance company (took several days, the insurance company is busy after all) and spent over an hour going over the bill line item by line item, that indeed, the insurance company could pay this bill.
Some version of the above has occurred with every single claim that has been filed since August 2007, including the necessary prescription drugs. Turns out the prescriptions are covered, there just happens to be 3 different divisions that the prescriptions have to go to and guess who is magically supposed to know what to send to who? All of these divisions are part of the same company, but apparently do not know how to, or won't, communicate with each other. Procedures, you know.
We were called 3 times to come to the transplant center for the surgery. The first 2 times we were sent back home after preparation for the surgery. Stressful enough, right? Wrong. Insurance company denied these claims. Guess they thought we made these trips for the fun of it.
Finally, after 5 months of trying to obtain help from the company, it turns out that if you complain enough, you get assigned a patient coordinator. The patient coordinator got all of the denied claims taken care of and has been great help with every other issue that has come up. While I appreciate this person very much, I will be contacting state and federal government officials to see what I can do to help change these practices. From stories I've heard, I actually made progress much faster than most folks.
"Deny all, permit by exception" is a great concept for computer network security; it is not even close to a mediocre concept for health care benefits.
18 January 2008
Thoughts on Organ Donation
The website for the Legacy Organ and Tissue Registry, a division of the Alabama Organ Center is: http://www.legacyalabama.org/home.php.
Even if you have designated on your driver's license that you wish to be an organ donor, this registry is still a vital, important thing to do.
My husband was the recipient of a liver in December 2007. Even with the letter of thanks (anonymous of course, but you can read about that on the website if you desire) sent to the donor family, I'm not sure they will ever really know how their unselfishness has touched so many lives. Before my husband became a candidate for a transplant, I had only given this a passing thought - signing my driver's license and thinking, if I have anything worth taking they can have it. Now it is a sincere hope that, if it is my time to die, that there is some organ or tissue that will help someone live.
The entire process for an organ recipient is very stressful in itself. At the same time you are praying so hard for the organ you need, you know that this requires someone else to die. That, in itself, puts people in a quandry of emotions. One lady summed it up so well: I don't wish for a soul to die; however, if it is my time to go, I truly pray that I can help someone else to live or have a better quality of life. On top of that feeling, you have to stay by a telephone 24/7; have your clothes packed and ready to go; have all of your business taken care of; etc. When you receive the call you have just a few hours to get to the transplant center. After you're there, it is a blur of tests, xrays, and paperwork - and it is possible, all the way up to the actual incision is made, that something can occur that will stop the transplant. In that eventuality, you check out, go home, and start all over. In our particular case, we made 3 trips to the center before the transplant occurred. The third time, until they let me know from the OR that the surgery was underway, I refused to think that we wouldn't be going home in just a few minutes.
The surgery has been successful. My husband looks and feels better than he has in a couple of years. Right now life is centered around dealing with insurance (another story all in itself) healing, avoiding infection, avoiding rejection, and having weekly lab tests done. Things like avoiding crowds, tactfully not shaking hands or hugging friends, remembering that doorknobs are nasty and you need to religiously utilize hand sanitizer. . .
All of this wouldn't have been possible without the unselfishness of the donor family.
I can't imagine the feelings the donor family have gone through; however, I know that our family is eternally grateful to them.
If you haven't considered being an organ donor, please consider doing so. The weeks we spent at the transplant center were truly awe inspiring.
Even if you have designated on your driver's license that you wish to be an organ donor, this registry is still a vital, important thing to do.
My husband was the recipient of a liver in December 2007. Even with the letter of thanks (anonymous of course, but you can read about that on the website if you desire) sent to the donor family, I'm not sure they will ever really know how their unselfishness has touched so many lives. Before my husband became a candidate for a transplant, I had only given this a passing thought - signing my driver's license and thinking, if I have anything worth taking they can have it. Now it is a sincere hope that, if it is my time to die, that there is some organ or tissue that will help someone live.
The entire process for an organ recipient is very stressful in itself. At the same time you are praying so hard for the organ you need, you know that this requires someone else to die. That, in itself, puts people in a quandry of emotions. One lady summed it up so well: I don't wish for a soul to die; however, if it is my time to go, I truly pray that I can help someone else to live or have a better quality of life. On top of that feeling, you have to stay by a telephone 24/7; have your clothes packed and ready to go; have all of your business taken care of; etc. When you receive the call you have just a few hours to get to the transplant center. After you're there, it is a blur of tests, xrays, and paperwork - and it is possible, all the way up to the actual incision is made, that something can occur that will stop the transplant. In that eventuality, you check out, go home, and start all over. In our particular case, we made 3 trips to the center before the transplant occurred. The third time, until they let me know from the OR that the surgery was underway, I refused to think that we wouldn't be going home in just a few minutes.
The surgery has been successful. My husband looks and feels better than he has in a couple of years. Right now life is centered around dealing with insurance (another story all in itself) healing, avoiding infection, avoiding rejection, and having weekly lab tests done. Things like avoiding crowds, tactfully not shaking hands or hugging friends, remembering that doorknobs are nasty and you need to religiously utilize hand sanitizer. . .
All of this wouldn't have been possible without the unselfishness of the donor family.
I can't imagine the feelings the donor family have gone through; however, I know that our family is eternally grateful to them.
If you haven't considered being an organ donor, please consider doing so. The weeks we spent at the transplant center were truly awe inspiring.
Winter Storm's A-comin
I'm sure that some folks are not going to believe this, but the actual thought of a snowfall with accumulation in the South is enough to make local television stations flash a winter storm warning across the tv screen continuously until either (a) the event occurs or (b) they're wrong again.
If (a) occurs, then you will hear incessently how they told you for days that this was coming because of their wonderful new technology. If (b) occurs, then you never hear another word about it.
From our snowfall on Wednesday, one local station keeps letting us know that thanks to their live cameras, they were the only station where you could actually watch the snowfall. It does make you wonder if the television folks know that there is a wonderful invention in houses called windows. With this invention, you can actually see outside, utilizing no electricity or clicker at all, and see what is happening. Imagine, watching snow falling from the sky from inside your nice, warm house. Amazing.
If (a) occurs, then you will hear incessently how they told you for days that this was coming because of their wonderful new technology. If (b) occurs, then you never hear another word about it.
From our snowfall on Wednesday, one local station keeps letting us know that thanks to their live cameras, they were the only station where you could actually watch the snowfall. It does make you wonder if the television folks know that there is a wonderful invention in houses called windows. With this invention, you can actually see outside, utilizing no electricity or clicker at all, and see what is happening. Imagine, watching snow falling from the sky from inside your nice, warm house. Amazing.
17 January 2008
Snow in North Alabama
It actually snowed in North Alabama yesterday, and this is indeed a topic for news around here. Out in Limestone County, we got to see the snowfall, but that was it. My friend who lives in Marshall County (greater metropolitan Arab for those with maps handy), even had enough stick to take a picture of. http://smpctryphys.wordpress.com/2008/01/17/falleth/
My friends from the northern states find it humorous that I was 45 or so before I even knew such a thing as a snow shovel existed, but truth is truth. I didn't figure you needed a special tool to shovel the stuff out of your way, but I was told I was wrong. I was also told that my idea of getting rid of snow: getting something warm to drink, wrap up in a blanket, read a book, and wait for the snow to melt was a good idea, but not a reality where there is "real snowfall". I'll stick with the southern version of snowfall.
My friends from the northern states find it humorous that I was 45 or so before I even knew such a thing as a snow shovel existed, but truth is truth. I didn't figure you needed a special tool to shovel the stuff out of your way, but I was told I was wrong. I was also told that my idea of getting rid of snow: getting something warm to drink, wrap up in a blanket, read a book, and wait for the snow to melt was a good idea, but not a reality where there is "real snowfall". I'll stick with the southern version of snowfall.
15 January 2008
Home Again
Well, we're home and it's cold. Back to a little bit of routine, but ready to get camper cleaned up and head out again when Allen feels like it. The beach in the spring is really neat, there's not a lot of people there!
14 January 2008
Sunrise over bay
I think I could get used to this. Sun is rising over the bay, quiet, no one wanting anything. . . .
One more day of this, then we're leaving. Oh well. . .
Maybe more pictures later.
One more day of this, then we're leaving. Oh well. . .
Maybe more pictures later.
13 January 2008
NAS, Pensacola Jan 2008 Trip
We are in Pensacola at the Oak Grove RV park on the Pensacola Naval Air Station. It is beautiful, a little on the cool side, but not as cold as home! Sun is coming up over the bay now. We're going to the Blue Angels museum in a little while.
Allen's doing good. I can do the stuff that hurts him to do, if anything major happens we will call for help. Hopefully that won't happen.
It's amazing to me that we could just decide on Wednesday evening that we wanted to come down to Gulf Shores, and just left. I kept thinking I needed to do this or that, and all I HAD to do is make sure that we had Allen's meds and paperwork to get his labwork done in case we didn't come home. Just amazing!
Had great seafood lunch yesterday and today.A few pictures are at
http://picasaweb.google.com/Normalee0/Jan08Pictures
I'm going to post them on MySpace also, but there seems to be an issue with folks without an account viewing them.
Allen's doing good. I can do the stuff that hurts him to do, if anything major happens we will call for help. Hopefully that won't happen.
It's amazing to me that we could just decide on Wednesday evening that we wanted to come down to Gulf Shores, and just left. I kept thinking I needed to do this or that, and all I HAD to do is make sure that we had Allen's meds and paperwork to get his labwork done in case we didn't come home. Just amazing!
Had great seafood lunch yesterday and today.A few pictures are at
http://picasaweb.google.com/Normalee0/Jan08Pictures
I'm going to post them on MySpace also, but there seems to be an issue with folks without an account viewing them.
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