Thursday, March 17, 2011
It's going to be rough
Had clinic today was kinda rough. I have not been feeling very good lately been having cramping in my legs and feet,fluid overload, and just been beyond tired. As I was telling Dr. M he asked me do your hands shake? I said yes but what does that have to do with anything, he then told me that is not good all my symptoms are telling them I am not taking to dialysis. So next week I have to go in for a kt/v so they can see if what they think is true. Being on dialysis I always joke about "dying" because if I don't find humor in being sick I don't think mentally I can handle it but now I am scared what if dialysis isn't doing the job? I just don't get it....I just want this all to be a nightmare and go back to a "normal" life. I am just so tired and frustrated with feeling this way I want to feel good I want to have energy I want to be able to act my age. Yesterday I had fluid overload really bad my face was huge and I just felt really bad I called my mom and told her I really feel like I am dying and I tried to laugh it off afterwards but honestly I felt like I was I just didn't feel right at all. This is all just beginning to be too much to handle mentally and physically. People can think I am being a drama queen or a baby but until you go through your organs shutting down you have know idea how hard it really is.
Thursday, March 10, 2011
WHY PEOPLE DIE WAITING FOR TRANSPLANTS From IHATEDIALYSIS.COM
WHY PEOPLE DIE WAITING FOR TRANSPLANTS
More than 3,000 Americans die each year waiting for organ transplants. One reason is that a government monopoly keeps the organ supply artificially low.
In January 1994 doctors at New York's Mount Sinai Hospital told Electra Tsucalas that her liver was failing. Her only hope was a transplant. Across the river in New Jersey, Tsucalas could have had a new liver in less than 3 months. In New York, she had to wait 15 months. By a miracle she survived. Others aren't that lucky. Last year 3,104 patients died waiting for transplants of all types. (For tips on how to make sure you aren't one of the unlucky ones, see box, p. 148.)
How lucky you are depends almost entirely on where you are. About 44,000 patients in the U.S. are waiting and hoping for transplants of all kinds; in Fort Worth, Tex., the wait for a kidney is only a few weeks; in nearby Dallas, however, the wait is more like a year.
Why don't the transplant hospitals simply harvest more organs? Or import them from other cities? Because they aren't allowed to under a 1984 law that took organ donation and allocation out of the hands of doctors, hospitals and patients and put it in the hands of a federal bureaucracy. The bureaucracy rules over a series of organ banks. The banks, with rare exceptions for kidneys,
aren't allowed to export organs if anyone in the local territory can use them. Thus a critically ill patient in one city might die while organs go to less desperate patients nearby. The system was supposed to insure the supply and fair allocation of organs. It doesn't work that easily.
Until about a decade ago federal government involvement was limited to Medicare reimbursement for kidney replacements. Doctors did relatively few transplants because patients' immune systems usually rejected the foreign organs. All that changed in 1983, when Sandoz Pharmaceuticals Corp. introduced cyclosporine, a drug that suppresses the immune system, thereby reducing the chances of rejection. Along with the sudden boom in transplants came fears that an unregulated market would benefit only wealthy patients. In 1984 Al Gore, then a U.S. congressman and a strong advocate of federal interventionism, demanded that the federal government step in to regulate transplants.
As often happens in such cases, policies intended to promote egalitarianism simply ended up making everyone worse off. Congress took the bait, and the National Organ Transplant Act of 1984 was passed. The act banned commerce in organs and put the Department of Health & Human Services in charge of donations and transplantation.
Faster than you could say "bureaucracy," the feds set up a network of 69 local organ banks to harvest and distribute organs. The allocation guidelines sound logical: A Richmond, Va. contractor called the United Network for Organ Sharing keeps a list of all transplant candidates. That list has all kinds of information, including how sick the patient is, his blood type, height, weight and what size organ the candidate needs.
Say a liver turns up in San Francisco. The Richmond organ network ranks suitable liver seekers in northern and central California based on how sick they are and how long they've been waiting. The local organ bank selects the sickest patient within the local territory who has waited the longest. The organ bank sells the liver to the hospital where the patient is waiting. No organ can be sent out of that territory, however, until every liver candidate has been considered, even if, say, a patient in southern California has a more urgent need. These arbitrary territorial limits are killers. Ask Dr. John Fung, a liver transplant specialist at the University of Pittsburgh Medical Center. Fung has more than 530 patients waiting for livers. Many come from other states, draining the local organ supply and making it harder for locals to get organs. In 1995 some 18% of Fung's liver patients died waiting, including many Pittsburgh-area patients who couldn't afford to go elsewhere.
"This system is so grossly unfair," fumes Fung, who says he went into medicine to avoid politics and now finds that the only way he can help his patients is to lobby for change.
Quite clearly the national demand for organs exceeds the supply. The chief source is patients who become brain-dead through accidents or other causes but have otherwise healthy systems. There are more than enough brain deaths each year-some 15,000, according to the Harvard
University School of Public Health-to take care of the 44,000 people on the transplant waiting list. In cases of brain death, the organs can be kept alive with a respirator that keeps the heart pumping. One donor can provide several organs, a couple of kidneys, say, and a heart, lung or liver. In 1994, the latest year for which figures are available, the federal system produced 5,100 dead donors, enough for 15,200 transplants. (The organs become available when the hospital calls the local organ bank to report a potential donor and the family consents.)
So why the interminable waits? In large part because of the bureaucratic centralization dreamed up by Gore and passed by Congress. A doctor cannot make a deal on his own to get an organ for a patient. The doctor must list his patient with the Richmond, Va. organ network, even if there is a potential donor in the doctor's own hospital. The donor's family simply turns the organs over to the local organ bank.
One consequence is that few hospitals have any incentive to encourage donors. Why bother when they won't be able to keep them for their own patients? Five thousand of the nation's 6,300 hospitals don't produce even one donor per year. Even the huge transplant hospitals aren't very good at it. In 1994 New York's Mount Sinai did 262 transplants of all kinds. But Mount Sinai (1994 revenues, $736 million) produced only two donors. Today 230 patients are waiting for livers at Mount Sinai. Last year some 30 Mount Sinai liver candidates died waiting. Many would have lived had Congress not wrapped the whole transplant system in so much red tape.
The basic problem is this: The government monopoly that runs the transplant market is terribly bad at creating supply to satisfy the demand. Each organ bank has a staff of "procurement coordinators" trained to sell grieving families on the idea of donating a loved one's organs to help strangers. It's a tough sell. And the coordinators are forbidden to offer compensation, not even to help with burial expenses. So the families of potential donors have no financial incentive to give.
In a recent survey by the Boston-based Partnership for Organ Donation, 52% of the families that refused said they didn't realize that their brain-dead relative was in fact dead. No wonder the yields are low.
"Our organ bank does not do a good job," says Dr. Byers Shaw, head of the transplant program at the University of Nebraska Medical Center in Omaha. Shaw, who received only 95 livers last year, says he could have used 200 more.
If Shaw is disturbed by conditions in Nebraska, he would be outraged by what happened in New York City. The New York Regional Transplant Program (1994 revenues, $10.5 million) is the organ bank that handles procurement at hospitals in New York City and its northern and eastern suburbs. Last year the board hired a lawyer to investigate the spending practices of Executive Director Bruce McFadden. Among the findings: In 1994 the organ bank staff spent $721,476 on travel, $353,449 on consultants, $153,182 for "conferences," $121,000 on public relations and nearly $1 million to renovate the offices, including a custom-made stand-up desk for McFadden.
More than half the organ bank's revenues come from Medicare and Medicaid. But what really worried the board wasn't the extravagances so much as one outlay that did a lot of good for patients: $30,000 to reward families who donated by picking up the cost of shipping the donor's remains home for burial. Under the federal law, payments for donations are a no-no. McFadden was allowed to resign. The New York situation may not have been typical, but it demonstrates how little the politically appointed bureaucracy is concerned with increasing the supply of organs.
Transplants have long been lucrative procedures, according to Burl-ington, Mass.-based Putnam Asso-ciates. Liver transplants typically run about $200,000. The federal government has found a way to keep a lid on demand. To get Medicare transplant patients, hospitals must promise to shun candidates with certain conditions. To get Medicare liver transplant patients, for example, they are expected to avoid liver seekers with diseases like cancer. Medicare recently came out against paying for lung transplants at centers accepting patients who have had chest surgery, are seriously overweight, smoke or have recently quit smoking. It's Medicare's way of rationing transplants for everyone.
In at least one sense the artificial shortage of organs caused by federal policy encourages high prices: What's scarce becomes more valuable, and price resistance vanishes. Given a better supply of hearts, livers, lungs and kidneys, more such operations would take place and the price might well drop.
An obvious solution would be for the government to get out of the way and let the market take over. Once doctors and hospitals could harvest organs for their own patients, there would be added incentive for doctors and hospitals to solicit for them. If they could offer money and other economic incentives, more families might agree to donate. Of course, this would inevitably lead to charges that the rich were buying organs from the poor. So if that totally free-market solution is unacceptable, there are less drastic changes that could increase the supply of organs and reduce the waiting time and the regional disparities.
At minimum, local organ banks should compete with one another so that there is more incentive to find donors. Also, the arbitrary territorial boundaries should be eliminated to let the organs go to the neediest patients. And the government should reward donors. Here's a good way: If you sign "donor" on your driver's license at age 18, you get to the top of the list when you need a heart at age 53.
ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
SURVIVAL TACTICS
If your doctor says you may someday need, say, a liver transplant, your first step is to find a
hospital with lots of experience, good survival rates and short waiting times. How do you do that?
The earlier you get on a waiting list, the more likely you are to get an organ before it's too late. So get the process going, even if your doctor says you do not need the transplant right away. Call the United Network for Organ Sharing (unos) at 1-800-24DONOR. Ask for a copy of the 1994 Report of Center Specific Graft and Patient Survival Rates (price: $115) or just the liver volume ($30).
This book tells how many liver transplants each hospital did between 1987 and 1991, what percentage of the grafts took and what percentage of the patients survived. The results vary considerably .
At Duke University Medical Center, for instance, fewer than 40% of the liver recipients lived one year. By contrast, at the University of Wisconsin Hospital nearly 85% of the liver recipients survived at least one year. And at New York University Medical Center nearly 90% lived at least one year.
Be sure to ask transplant hospitals for current survival rates, in writing. Once you've picked a hospital with good numbers, ask how long its patients usually wait. Insist on getting the overall average waiting time, then check it with unos. Demand a copy of the Analysis of Waiting List Registrations and Median Waiting Times.
If the hospital or unos puts you off, contact Judith Braslow at the Department of Health & Human Services Division of Transplantation (301-443-8036, or E-mail her at jbraslow@hrsa.ssw.dhhs.gov).
Some of the differences in waiting times are astonishing: In New York, for instance, the median wait for a liver is 308 days, while in Wisconsin, it's only 61 days. So, as good as nyu is, if you need a liver fast, you're better off in Wisconsin.
But before you go flying off to the Midwest, make sure the hospital doesn't rule you out because of your age or medical problems such as cancer, or alcohol or drug abuse. If you don't make the cut because of some arbitrary rule, use the unos book to check if they've ever transplanted anyone in your condition. Your doctor may be able to convince them to make an exception for you, too.
Next step: Figure out how your transplant will be paid for. Medicare pays for kidney replacements, with no age limits. But if you're under 65 you are not eligible for a Medicare heart, lung or liver, unless you have been disabled at least two years. So ask each center to estimate the price for your evaluation, transplantation, follow-up care and medicine. Then check your health plan to see if there are any coverage limits. Even with limits, there is some room for bargaining.
Next, have your doctor refer you to your first-choice center for evaluation. If they accept you, they'll send unos information on your age, sex, condition, blood type and a $325 computer registration fee. You can improve your chances of getting an organ quickly by listing at more than
one transplant center. Few doctors will tell you about this option. Only 5% of all patients multiple- list. But if you can afford it, you should.
Transplant candidates waiting in the hospital usually take precedence over those well enough to go home. So another way to speed things up is to get your doctor to put you in the hospital until an organ turns up.
Improve your chances even more by getting the transplant center you've chosen to import an organ from a foreign organ bank. U.S. transplant centers are allowed to use foreign sources as long as the donor is dead and the family receives no compensation. unos can provide you with a list of foreign organ banks if asked.
Finally, be available. A third of transplanted organs don't go to the first person on the list-often because when the organ turned up, the doctor couldn't get the patient on the phone in time. Carry a beeper all the time so when your turn comes, you'll be ready.
From unos, request copies of three brochures: "What Every Patient Needs to Know," "Questions Patients Should Ask" and "Financing Transplantation."
Waiting for an organ transplant
State Median wait % (days) transplanted*
Liver Where do you find the shortest waits? Kentucky 8 87.5 Iowa 20 81.6 Alabama 48 84.7 Utah 49 93.1 Florida 50 78.6
Where do you find the longest waits? Maryland 564 36.3 Illinois 358 43.1 Michigan 324 55.9 New York 308 49.9 Indiana 276 60.9
Heart Where do you find the shortest waits? Hawaii 0 100.0 Mississippi 27 75.0
Iowa 51 50.0 Oregon 74 78.8 Colorado 81 72.7
Where do you find the longest waits?
Indiana New York Connecticut Oklahoma Virginia
407 50.0 363 45.8 359 52.0 352 48.9 348 45.1
Kidney Where do
Oregon Kentucky Iowa Florida Arkansas
you find the shortest waits? 86 84.3
95 74.3 212 62.8 267 61.6 285 56.7
Where are you least likely to get a kidney? Hawaii ** 5.5 Puerto Rico ** 10.5 South Dakota ** 13.8 District of Columbia ** 18.5 Massachusetts ** 18.9
*Of patients listed in 1994. **So few of the kidney patients listed in 1994 have been transplanted that unos can't compute median waiting times for 26 of the 42 states, Washington, D.C. and Puerto Rico, where kidney transplants are done.
Source: United Network for Organ Sharing. ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
More than 3,000 Americans die each year waiting for organ transplants. One reason is that a government monopoly keeps the organ supply artificially low.
In January 1994 doctors at New York's Mount Sinai Hospital told Electra Tsucalas that her liver was failing. Her only hope was a transplant. Across the river in New Jersey, Tsucalas could have had a new liver in less than 3 months. In New York, she had to wait 15 months. By a miracle she survived. Others aren't that lucky. Last year 3,104 patients died waiting for transplants of all types. (For tips on how to make sure you aren't one of the unlucky ones, see box, p. 148.)
How lucky you are depends almost entirely on where you are. About 44,000 patients in the U.S. are waiting and hoping for transplants of all kinds; in Fort Worth, Tex., the wait for a kidney is only a few weeks; in nearby Dallas, however, the wait is more like a year.
Why don't the transplant hospitals simply harvest more organs? Or import them from other cities? Because they aren't allowed to under a 1984 law that took organ donation and allocation out of the hands of doctors, hospitals and patients and put it in the hands of a federal bureaucracy. The bureaucracy rules over a series of organ banks. The banks, with rare exceptions for kidneys,
aren't allowed to export organs if anyone in the local territory can use them. Thus a critically ill patient in one city might die while organs go to less desperate patients nearby. The system was supposed to insure the supply and fair allocation of organs. It doesn't work that easily.
Until about a decade ago federal government involvement was limited to Medicare reimbursement for kidney replacements. Doctors did relatively few transplants because patients' immune systems usually rejected the foreign organs. All that changed in 1983, when Sandoz Pharmaceuticals Corp. introduced cyclosporine, a drug that suppresses the immune system, thereby reducing the chances of rejection. Along with the sudden boom in transplants came fears that an unregulated market would benefit only wealthy patients. In 1984 Al Gore, then a U.S. congressman and a strong advocate of federal interventionism, demanded that the federal government step in to regulate transplants.
As often happens in such cases, policies intended to promote egalitarianism simply ended up making everyone worse off. Congress took the bait, and the National Organ Transplant Act of 1984 was passed. The act banned commerce in organs and put the Department of Health & Human Services in charge of donations and transplantation.
Faster than you could say "bureaucracy," the feds set up a network of 69 local organ banks to harvest and distribute organs. The allocation guidelines sound logical: A Richmond, Va. contractor called the United Network for Organ Sharing keeps a list of all transplant candidates. That list has all kinds of information, including how sick the patient is, his blood type, height, weight and what size organ the candidate needs.
Say a liver turns up in San Francisco. The Richmond organ network ranks suitable liver seekers in northern and central California based on how sick they are and how long they've been waiting. The local organ bank selects the sickest patient within the local territory who has waited the longest. The organ bank sells the liver to the hospital where the patient is waiting. No organ can be sent out of that territory, however, until every liver candidate has been considered, even if, say, a patient in southern California has a more urgent need. These arbitrary territorial limits are killers. Ask Dr. John Fung, a liver transplant specialist at the University of Pittsburgh Medical Center. Fung has more than 530 patients waiting for livers. Many come from other states, draining the local organ supply and making it harder for locals to get organs. In 1995 some 18% of Fung's liver patients died waiting, including many Pittsburgh-area patients who couldn't afford to go elsewhere.
"This system is so grossly unfair," fumes Fung, who says he went into medicine to avoid politics and now finds that the only way he can help his patients is to lobby for change.
Quite clearly the national demand for organs exceeds the supply. The chief source is patients who become brain-dead through accidents or other causes but have otherwise healthy systems. There are more than enough brain deaths each year-some 15,000, according to the Harvard
University School of Public Health-to take care of the 44,000 people on the transplant waiting list. In cases of brain death, the organs can be kept alive with a respirator that keeps the heart pumping. One donor can provide several organs, a couple of kidneys, say, and a heart, lung or liver. In 1994, the latest year for which figures are available, the federal system produced 5,100 dead donors, enough for 15,200 transplants. (The organs become available when the hospital calls the local organ bank to report a potential donor and the family consents.)
So why the interminable waits? In large part because of the bureaucratic centralization dreamed up by Gore and passed by Congress. A doctor cannot make a deal on his own to get an organ for a patient. The doctor must list his patient with the Richmond, Va. organ network, even if there is a potential donor in the doctor's own hospital. The donor's family simply turns the organs over to the local organ bank.
One consequence is that few hospitals have any incentive to encourage donors. Why bother when they won't be able to keep them for their own patients? Five thousand of the nation's 6,300 hospitals don't produce even one donor per year. Even the huge transplant hospitals aren't very good at it. In 1994 New York's Mount Sinai did 262 transplants of all kinds. But Mount Sinai (1994 revenues, $736 million) produced only two donors. Today 230 patients are waiting for livers at Mount Sinai. Last year some 30 Mount Sinai liver candidates died waiting. Many would have lived had Congress not wrapped the whole transplant system in so much red tape.
The basic problem is this: The government monopoly that runs the transplant market is terribly bad at creating supply to satisfy the demand. Each organ bank has a staff of "procurement coordinators" trained to sell grieving families on the idea of donating a loved one's organs to help strangers. It's a tough sell. And the coordinators are forbidden to offer compensation, not even to help with burial expenses. So the families of potential donors have no financial incentive to give.
In a recent survey by the Boston-based Partnership for Organ Donation, 52% of the families that refused said they didn't realize that their brain-dead relative was in fact dead. No wonder the yields are low.
"Our organ bank does not do a good job," says Dr. Byers Shaw, head of the transplant program at the University of Nebraska Medical Center in Omaha. Shaw, who received only 95 livers last year, says he could have used 200 more.
If Shaw is disturbed by conditions in Nebraska, he would be outraged by what happened in New York City. The New York Regional Transplant Program (1994 revenues, $10.5 million) is the organ bank that handles procurement at hospitals in New York City and its northern and eastern suburbs. Last year the board hired a lawyer to investigate the spending practices of Executive Director Bruce McFadden. Among the findings: In 1994 the organ bank staff spent $721,476 on travel, $353,449 on consultants, $153,182 for "conferences," $121,000 on public relations and nearly $1 million to renovate the offices, including a custom-made stand-up desk for McFadden.
More than half the organ bank's revenues come from Medicare and Medicaid. But what really worried the board wasn't the extravagances so much as one outlay that did a lot of good for patients: $30,000 to reward families who donated by picking up the cost of shipping the donor's remains home for burial. Under the federal law, payments for donations are a no-no. McFadden was allowed to resign. The New York situation may not have been typical, but it demonstrates how little the politically appointed bureaucracy is concerned with increasing the supply of organs.
Transplants have long been lucrative procedures, according to Burl-ington, Mass.-based Putnam Asso-ciates. Liver transplants typically run about $200,000. The federal government has found a way to keep a lid on demand. To get Medicare transplant patients, hospitals must promise to shun candidates with certain conditions. To get Medicare liver transplant patients, for example, they are expected to avoid liver seekers with diseases like cancer. Medicare recently came out against paying for lung transplants at centers accepting patients who have had chest surgery, are seriously overweight, smoke or have recently quit smoking. It's Medicare's way of rationing transplants for everyone.
In at least one sense the artificial shortage of organs caused by federal policy encourages high prices: What's scarce becomes more valuable, and price resistance vanishes. Given a better supply of hearts, livers, lungs and kidneys, more such operations would take place and the price might well drop.
An obvious solution would be for the government to get out of the way and let the market take over. Once doctors and hospitals could harvest organs for their own patients, there would be added incentive for doctors and hospitals to solicit for them. If they could offer money and other economic incentives, more families might agree to donate. Of course, this would inevitably lead to charges that the rich were buying organs from the poor. So if that totally free-market solution is unacceptable, there are less drastic changes that could increase the supply of organs and reduce the waiting time and the regional disparities.
At minimum, local organ banks should compete with one another so that there is more incentive to find donors. Also, the arbitrary territorial boundaries should be eliminated to let the organs go to the neediest patients. And the government should reward donors. Here's a good way: If you sign "donor" on your driver's license at age 18, you get to the top of the list when you need a heart at age 53.
ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
SURVIVAL TACTICS
If your doctor says you may someday need, say, a liver transplant, your first step is to find a
hospital with lots of experience, good survival rates and short waiting times. How do you do that?
The earlier you get on a waiting list, the more likely you are to get an organ before it's too late. So get the process going, even if your doctor says you do not need the transplant right away. Call the United Network for Organ Sharing (unos) at 1-800-24DONOR. Ask for a copy of the 1994 Report of Center Specific Graft and Patient Survival Rates (price: $115) or just the liver volume ($30).
This book tells how many liver transplants each hospital did between 1987 and 1991, what percentage of the grafts took and what percentage of the patients survived. The results vary considerably .
At Duke University Medical Center, for instance, fewer than 40% of the liver recipients lived one year. By contrast, at the University of Wisconsin Hospital nearly 85% of the liver recipients survived at least one year. And at New York University Medical Center nearly 90% lived at least one year.
Be sure to ask transplant hospitals for current survival rates, in writing. Once you've picked a hospital with good numbers, ask how long its patients usually wait. Insist on getting the overall average waiting time, then check it with unos. Demand a copy of the Analysis of Waiting List Registrations and Median Waiting Times.
If the hospital or unos puts you off, contact Judith Braslow at the Department of Health & Human Services Division of Transplantation (301-443-8036, or E-mail her at jbraslow@hrsa.ssw.dhhs.gov).
Some of the differences in waiting times are astonishing: In New York, for instance, the median wait for a liver is 308 days, while in Wisconsin, it's only 61 days. So, as good as nyu is, if you need a liver fast, you're better off in Wisconsin.
But before you go flying off to the Midwest, make sure the hospital doesn't rule you out because of your age or medical problems such as cancer, or alcohol or drug abuse. If you don't make the cut because of some arbitrary rule, use the unos book to check if they've ever transplanted anyone in your condition. Your doctor may be able to convince them to make an exception for you, too.
Next step: Figure out how your transplant will be paid for. Medicare pays for kidney replacements, with no age limits. But if you're under 65 you are not eligible for a Medicare heart, lung or liver, unless you have been disabled at least two years. So ask each center to estimate the price for your evaluation, transplantation, follow-up care and medicine. Then check your health plan to see if there are any coverage limits. Even with limits, there is some room for bargaining.
Next, have your doctor refer you to your first-choice center for evaluation. If they accept you, they'll send unos information on your age, sex, condition, blood type and a $325 computer registration fee. You can improve your chances of getting an organ quickly by listing at more than
one transplant center. Few doctors will tell you about this option. Only 5% of all patients multiple- list. But if you can afford it, you should.
Transplant candidates waiting in the hospital usually take precedence over those well enough to go home. So another way to speed things up is to get your doctor to put you in the hospital until an organ turns up.
Improve your chances even more by getting the transplant center you've chosen to import an organ from a foreign organ bank. U.S. transplant centers are allowed to use foreign sources as long as the donor is dead and the family receives no compensation. unos can provide you with a list of foreign organ banks if asked.
Finally, be available. A third of transplanted organs don't go to the first person on the list-often because when the organ turned up, the doctor couldn't get the patient on the phone in time. Carry a beeper all the time so when your turn comes, you'll be ready.
From unos, request copies of three brochures: "What Every Patient Needs to Know," "Questions Patients Should Ask" and "Financing Transplantation."
Waiting for an organ transplant
State Median wait % (days) transplanted*
Liver Where do you find the shortest waits? Kentucky 8 87.5 Iowa 20 81.6 Alabama 48 84.7 Utah 49 93.1 Florida 50 78.6
Where do you find the longest waits? Maryland 564 36.3 Illinois 358 43.1 Michigan 324 55.9 New York 308 49.9 Indiana 276 60.9
Heart Where do you find the shortest waits? Hawaii 0 100.0 Mississippi 27 75.0
Iowa 51 50.0 Oregon 74 78.8 Colorado 81 72.7
Where do you find the longest waits?
Indiana New York Connecticut Oklahoma Virginia
407 50.0 363 45.8 359 52.0 352 48.9 348 45.1
Kidney Where do
Oregon Kentucky Iowa Florida Arkansas
you find the shortest waits? 86 84.3
95 74.3 212 62.8 267 61.6 285 56.7
Where are you least likely to get a kidney? Hawaii ** 5.5 Puerto Rico ** 10.5 South Dakota ** 13.8 District of Columbia ** 18.5 Massachusetts ** 18.9
*Of patients listed in 1994. **So few of the kidney patients listed in 1994 have been transplanted that unos can't compute median waiting times for 26 of the 42 states, Washington, D.C. and Puerto Rico, where kidney transplants are done.
Source: United Network for Organ Sharing. ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
Wednesday, February 23, 2011
News
Well I have not been on in awhile and a lot has happened some good some bad but we will get through it. My dad was suppose to be down this week for the final tests and to schedule surgery but he called me on the 17th and told me the news neither one of us wanted to hear... My dad has Thyroid Cancer. It's very hard to say and think about that something could be wrong with him and it makes me feel like an asshole because I am upset that I have lost my kidney, it was so close but then I am upset because I don't want anything to happen to my dad. I would give anything if my dad would just get better even if that means dialysis for a while longer. I want to be strong for my parents my dad because he is going through it and my mom because she is the one next to him and taking care of him. My dad is being so strong and positive and I wish I could do the same but I just think CANCER! NO KIDNEY! I cry myself to sleep every night thinking about all of this and then I add the stress of people... jimmine it's hard to stay strong. This past 4 months have been the toughest but the greatest my dad and I have the best relationship ever and if it wasn't for him getting all these tests for me they would not have found the cancer because he NEVER goes to the doctor. So in a way I got to save him and he already saved me a long time ago, by calling me and just saying hey kid how ya doin, it's ok to cry and you will get through this. Him and I are both on a rollercoaster that we both want to get off of...which we will just need to hold on a little longer. We are both fighters and we will both kick the shit out of these disease that try to drag us down, they may drag us a little but we will get right back up and fight till we beat this battle.
On a little up beet level Uncle Jim is getting tests done. That is all I want to say since we have been down this road before so I don't want to jinx it. Also, Meg told me about a website IHATEDIALYSIS.COM OMG I LOVE IT!!!!!! SO many people I can talk to who know exactly what I am going through or who have gone through it, it's just nice to hear ideas on how to fix some issues I am having and it's nice to hear I HATE DIALYSIS just as much as the next person. lol
Well I am going to go to lay down and play words with friends and angry birds.
I love you dad and thank you for everything.
On a little up beet level Uncle Jim is getting tests done. That is all I want to say since we have been down this road before so I don't want to jinx it. Also, Meg told me about a website IHATEDIALYSIS.COM OMG I LOVE IT!!!!!! SO many people I can talk to who know exactly what I am going through or who have gone through it, it's just nice to hear ideas on how to fix some issues I am having and it's nice to hear I HATE DIALYSIS just as much as the next person. lol
Well I am going to go to lay down and play words with friends and angry birds.
I love you dad and thank you for everything.
Wednesday, February 16, 2011
Wednesday, February 9, 2011
Kevin & Tom
Last Thursday night, Tom Walter got in his car and began a 300-mile drive from Winston-Salem, North Carolina, to Atlanta. Wake Forest's baseball coach is well-acquainted with the rhythms of the road in general, and this stretch of highway in particular.
The road to Atlanta runs through small towns like Kings Mountain and Lavonia and Startex, towns where Walter and his coaches sift through the best local talent, looking for that one gem, that perfect fit. Most of the kids he meets along this highway go on to other schools, other lives. But a few come to Wake Forest, and those that do, become family.
On this Thursday night, though, Walter wasn't going to offer a kid a scholarship.
***
You know how the story starts. You've seen it a thousand times, in movies and TV shows and maybe, if you're lucky, in real life. Kid gets a scholarship offer to play for a big-name school. Coach takes a liking to kid, treats him like family. Coach stands up for kid, gives kid a chance that no one else could or would. So far, so routine, right?
That’s where this story takes a turn. The kid in this story is a baseball player from Columbus, Georgia, named Kevin Jordan. Recruited by Walter and his assistants to play ball for the Demon Deacons, the rangy outfielder first visited Winston-Salem possessed of rare confidence for a prep athlete. Part of that surely came from the fact that he was good enough to draw the attention of the nexus of the baseball universe –- the Yankees selected him in the 19th round last year -- but part comes from some deeper reservoir of calm.
A 2010 high school graduate, Jordan spent most of the spring of his senior year sick with what everyone told him was the flu. While his classmates were skipping class and counting down the days until graduation, Jordan was steadily losing weight and strength. After he dropped 30 pounds, his family took him to Emory University Hospital for tests. What they learned devastated them, shattering dreams of major-league stardom.
Kevin Jordan has ANCA vasculitis, a disease in which his own white blood cells began attacking his own tissues. Soon after the diagnosis, his kidneys began to fail, and by last summer, Jordan was on dialysis three times per week.
And still the disease marched on. In August, right about the time he began attending classes at Wake, doctors determined that Jordan's kidney function was down to eight percent. They recommended an immediate transplant.
Far, far easier prescribed than done. A kidney donation requires a match, and no one in Jordan's family matched up. Jordan was looking at joining the national registry. The United Network for Organ Sharing indicates that in 2009, 16,829 kidney transplants were performed in the United States, but nearly 86,000 people await a kidney, with a median wait time of four years. Those weren’t favorable odds for someone in Kevin’s condition.
The disease didn't wait, however, and it didn't respect Jordan's new surroundings. With the assistance of Wake Forest trainer Jeff Strahm, Jordan learned how to perform the dialysis on himself, and by August 2010, he was on the machine 18 to 20 hours a day.
It was right around that time when Coach Walter decided he ought to get tested.
“The simple fact that he showed up on campus demands so much respect,” Walter says. “For an 18-year-old kid to go through what he's gone through and just be on campus is an amazing story in itself. The level of commitment and sacrifice on his part demands the same from the people around him.”
***
This is one of those stories that could get drenched in sentimentalism, a tale that could be wrapped in evocative music and soft-focus, slow-pan camera work. It works, doesn't it? Coach learns he's a match and offers up his kidney for this kid he barely knows. This will be a heartwarming segment on half a dozen sports news channels before Memorial Day.
And that’s just fine. Lord knows we need stories of college coaches willing to give everything for their kids, rather than just ride them for two, three, four years and turn them out in favor of a new crop. People will hear of Tom Walter’s story, they’ll be amazed by it and him, and he’s cool with all that.
Just don’t go expecting him to think it’s anything special.
“This is something I would have done for any of my ballplayers,” he said. “There's not a kid on this
team, or a kid that I've ever coached, that I wouldn’t have done this for.”
If you think that’s just him saying that, maybe you should get to know Tom Walter a bit better.
***
Walter had some game of his own: A 1991 graduate of Georgetown, he was a four-year starter at catcher and outfield, a team captain, and a member of the 1991 Big East All-Academic team. As a coach, he set George Washington University’s record for wins with 275 against 124 losses. And by 2005, after coaching his alma mater for eight seasons, he’d taken the reins at the University of New Orleans.
2005. New Orleans. You see where this is going.
When Katrina hit, Walter gathered his team together and moved his base of operations 1,100 miles west, to Las Cruces, New Mexico. He struck a deal with New Mexico State University for his team to play in the fall semester there, and in the spring semester, the team lived out of hotel rooms in Mobile, Alabama.
“Our No. 1 goal all along was to keep the kids on pace for graduation,” he says. “We also wanted to keep the program moving forward. UNO baseball had such a great tradition, and I didn't want it to die on my watch.”
That season, despite calling three different states home, the team won 30 games for the first time in a decade. He spent five years at UNO before getting the call from Wake Forest in 2009.
A man stands by his team. It really is that simple.
***
To determine if you’re a kidney donation match, you need to undergo a battery of tests that can take more than a month. Fail even one of the tests, and you’re out. And every step along the way is another chance to bail, to decide that maybe you’re not quite so noble and self-sacrificing after all.
Starting five days before Christmas, Walter underwent cross-match testing, chest x-rays, CT scans and blood pressure monitoring. He passed every test, and on January 28, doctors proclaimed him a match for kidney donation.
Six days later, after clearing his decision with his family, his team and his school, he was on the road to Atlanta.
“I never once questioned the decision [to donate] from the beginning,” he says. “I got frustrated with the process, but never once said to myself, ‘What am I doing?’ In fact, it was the complete opposite. I would have been extremely disappointed for Kevin if I wasn't a match. It wasn't the 12th hour, but he was running out of options.”
Any time you’re talking organ transplant, you’re talking significant risk. The NKF estimates that the five-year survival rate for a transplant from a living donor is about 90 percent, but many live for decades more.
But it’s best not to think of the math that’s involved when you're talking about a college kid. Rather, focus on what he can do with the time he’s been given.
Both Alonzo Mourning and Sean Elliott returned to play in the NBA after kidney transplants, so it’s possible Jordan could return to the diamond. It’ll be months before he’s well enough to play at any competitive level. “It’s something that Kevin really wants, and I want it for him,” Walter says. “Nobody knows if he'll be able to play or not, but obviously, that's not the most important thing right now.”
For Walter, the prospects for recovery are more favorable. He should be able to get back to normal activities within the month. “I don't know how long it’ll be before I can swing a fungo bat or coach third base,” he says. “Not right away, let's put it that way.”
***
Monday morning, while everyone else in the sporting world was still debating Aaron Rodgers, tiny Vader and the Black Eyed Peas, Walter and Jordan went under the knife. Doctors took Walter into the operating room at 8:00 a.m, and Jordan followed 90 minutes later. The procedure began at 11:15, and 45 minutes later, Walter's role was done. By 4:00, Jordan was resting in his own room at Emory University Hospital.
“Both surgeries went very well,” Dr. Kenneth Newell, lead surgeon on the removal procedure, said afterward. “We are pleased with how each patient is progressing. We expect each will recover fully.”
Eight hours. That’s all it took. And now it’s done. Everyone’s moving on together. Everyone's around to move on together. That’s exactly how Coach Walter wants it, exactly how it ought to be.
The road to Atlanta runs through small towns like Kings Mountain and Lavonia and Startex, towns where Walter and his coaches sift through the best local talent, looking for that one gem, that perfect fit. Most of the kids he meets along this highway go on to other schools, other lives. But a few come to Wake Forest, and those that do, become family.
On this Thursday night, though, Walter wasn't going to offer a kid a scholarship.
You know how the story starts. You've seen it a thousand times, in movies and TV shows and maybe, if you're lucky, in real life. Kid gets a scholarship offer to play for a big-name school. Coach takes a liking to kid, treats him like family. Coach stands up for kid, gives kid a chance that no one else could or would. So far, so routine, right?
That’s where this story takes a turn. The kid in this story is a baseball player from Columbus, Georgia, named Kevin Jordan. Recruited by Walter and his assistants to play ball for the Demon Deacons, the rangy outfielder first visited Winston-Salem possessed of rare confidence for a prep athlete. Part of that surely came from the fact that he was good enough to draw the attention of the nexus of the baseball universe –- the Yankees selected him in the 19th round last year -- but part comes from some deeper reservoir of calm.
A 2010 high school graduate, Jordan spent most of the spring of his senior year sick with what everyone told him was the flu. While his classmates were skipping class and counting down the days until graduation, Jordan was steadily losing weight and strength. After he dropped 30 pounds, his family took him to Emory University Hospital for tests. What they learned devastated them, shattering dreams of major-league stardom.
Kevin Jordan has ANCA vasculitis, a disease in which his own white blood cells began attacking his own tissues. Soon after the diagnosis, his kidneys began to fail, and by last summer, Jordan was on dialysis three times per week.
And still the disease marched on. In August, right about the time he began attending classes at Wake, doctors determined that Jordan's kidney function was down to eight percent. They recommended an immediate transplant.
Far, far easier prescribed than done. A kidney donation requires a match, and no one in Jordan's family matched up. Jordan was looking at joining the national registry. The United Network for Organ Sharing indicates that in 2009, 16,829 kidney transplants were performed in the United States, but nearly 86,000 people await a kidney, with a median wait time of four years. Those weren’t favorable odds for someone in Kevin’s condition.
The disease didn't wait, however, and it didn't respect Jordan's new surroundings. With the assistance of Wake Forest trainer Jeff Strahm, Jordan learned how to perform the dialysis on himself, and by August 2010, he was on the machine 18 to 20 hours a day.
It was right around that time when Coach Walter decided he ought to get tested.
“The simple fact that he showed up on campus demands so much respect,” Walter says. “For an 18-year-old kid to go through what he's gone through and just be on campus is an amazing story in itself. The level of commitment and sacrifice on his part demands the same from the people around him.”
This is one of those stories that could get drenched in sentimentalism, a tale that could be wrapped in evocative music and soft-focus, slow-pan camera work. It works, doesn't it? Coach learns he's a match and offers up his kidney for this kid he barely knows. This will be a heartwarming segment on half a dozen sports news channels before Memorial Day.
And that’s just fine. Lord knows we need stories of college coaches willing to give everything for their kids, rather than just ride them for two, three, four years and turn them out in favor of a new crop. People will hear of Tom Walter’s story, they’ll be amazed by it and him, and he’s cool with all that.
Just don’t go expecting him to think it’s anything special.
“This is something I would have done for any of my ballplayers,” he said. “There's not a kid on this
team, or a kid that I've ever coached, that I wouldn’t have done this for.”
If you think that’s just him saying that, maybe you should get to know Tom Walter a bit better.
Walter had some game of his own: A 1991 graduate of Georgetown, he was a four-year starter at catcher and outfield, a team captain, and a member of the 1991 Big East All-Academic team. As a coach, he set George Washington University’s record for wins with 275 against 124 losses. And by 2005, after coaching his alma mater for eight seasons, he’d taken the reins at the University of New Orleans.
2005. New Orleans. You see where this is going.
When Katrina hit, Walter gathered his team together and moved his base of operations 1,100 miles west, to Las Cruces, New Mexico. He struck a deal with New Mexico State University for his team to play in the fall semester there, and in the spring semester, the team lived out of hotel rooms in Mobile, Alabama.
“Our No. 1 goal all along was to keep the kids on pace for graduation,” he says. “We also wanted to keep the program moving forward. UNO baseball had such a great tradition, and I didn't want it to die on my watch.”
That season, despite calling three different states home, the team won 30 games for the first time in a decade. He spent five years at UNO before getting the call from Wake Forest in 2009.
A man stands by his team. It really is that simple.
To determine if you’re a kidney donation match, you need to undergo a battery of tests that can take more than a month. Fail even one of the tests, and you’re out. And every step along the way is another chance to bail, to decide that maybe you’re not quite so noble and self-sacrificing after all.
Starting five days before Christmas, Walter underwent cross-match testing, chest x-rays, CT scans and blood pressure monitoring. He passed every test, and on January 28, doctors proclaimed him a match for kidney donation.
Six days later, after clearing his decision with his family, his team and his school, he was on the road to Atlanta.
“I never once questioned the decision [to donate] from the beginning,” he says. “I got frustrated with the process, but never once said to myself, ‘What am I doing?’ In fact, it was the complete opposite. I would have been extremely disappointed for Kevin if I wasn't a match. It wasn't the 12th hour, but he was running out of options.”
Any time you’re talking organ transplant, you’re talking significant risk. The NKF estimates that the five-year survival rate for a transplant from a living donor is about 90 percent, but many live for decades more.
But it’s best not to think of the math that’s involved when you're talking about a college kid. Rather, focus on what he can do with the time he’s been given.
Both Alonzo Mourning and Sean Elliott returned to play in the NBA after kidney transplants, so it’s possible Jordan could return to the diamond. It’ll be months before he’s well enough to play at any competitive level. “It’s something that Kevin really wants, and I want it for him,” Walter says. “Nobody knows if he'll be able to play or not, but obviously, that's not the most important thing right now.”
For Walter, the prospects for recovery are more favorable. He should be able to get back to normal activities within the month. “I don't know how long it’ll be before I can swing a fungo bat or coach third base,” he says. “Not right away, let's put it that way.”
Monday morning, while everyone else in the sporting world was still debating Aaron Rodgers, tiny Vader and the Black Eyed Peas, Walter and Jordan went under the knife. Doctors took Walter into the operating room at 8:00 a.m, and Jordan followed 90 minutes later. The procedure began at 11:15, and 45 minutes later, Walter's role was done. By 4:00, Jordan was resting in his own room at Emory University Hospital.
“Both surgeries went very well,” Dr. Kenneth Newell, lead surgeon on the removal procedure, said afterward. “We are pleased with how each patient is progressing. We expect each will recover fully.”
Eight hours. That’s all it took. And now it’s done. Everyone’s moving on together. Everyone's around to move on together. That’s exactly how Coach Walter wants it, exactly how it ought to be.
Tuesday, February 8, 2011
Great news
Well surgery is scheduled! It is great news but my anxiety over the surgery is taking over my joy. I told Johnna today when I went to get my labs and she started screaming. It was pretty funny she was very excited and told me to start pounding down the protien and Vitamin C and to make sure I am extra careful not to get peritonitis because if I do get that infection I have to wait an extra 2 weeks to make sure I have no infection. I am going to have to miss the walk which SUCKS since I really wanted to go and be there but the kidney calls. I wish I would stop having panic attacks but I have never had surgery and it scares the hell out of me tubes down the throat, waking up during surgery, not waking up after surgery, catheter, I talked to my parents last night as they were trying to calm me down and explain it is ok to have these thoughts and concerns but instead of going crazy for 2 months maybe I should talk to an anesthesiologist and tell them what my fears are. My Dad on the other had has absolutely no fear he said he is 100% ready for this, he is ready to give me my life back. It is weird I can't remember what it is like to feel good, not be sick. Last time I was feeling good was I think 6th grade just sucks that it took them so long to figure out what was wrong and by that time it was a little late even though we didn't know it. My parents and I keep saying we thought renal failure wouldn't happen til I was in my 40's but like my Mom said if it would have happened then my Dad wouldn't have been able to donate at that time so it was actually good that it happened now rather then later. This illness has made me grow up and I wouldn't change it for a second. This has shown me that I am stronger then I thought. Well I am going to go take a Xanax since the panic attach has not gone away I am really going to have to hunt down the anesthesiologist. lol I just don't know how to thank my Dad for doing this for me.... I am getting my life back very shortly.
Subscribe to:
Posts (Atom)