An article today from NPR examines a recent study by Massachusetts General Hospital on the tax incentives offered by certain states for organ donors to help defer expenses related to the event. Legally, there can be no out of pocket expenses for the operation itself, or related medical procedures, but the donor will typically incur related expenses such as time taken off work, lost wages, travel, and other household costs related to recuperation. The article states that "the financial burden for a living kidney donor can range from $907 to $3,089." States that now offer tax breaks for organ donors include Arkansas, Georgia, Idaho, Iowa, Louisiana, Maryland, Massachusetts,
Minnesota, Mississippi, New Mexico, North Dakota, Ohio, Oklahoma, South
Carolina, Utah, Virginia and Wisconsin.
The study found the tax breaks ineffective as financial incentives for organ donation. Donation rates have remained flat within two years of passage, and the waiting list for kidneys, livers and bone marrow exceeds 100,000 patients. Perhaps the tax breaks need to offer greater household savings? By federal statute, it's illegal to pay someone for the organ itself. For the full article, click here. If you have comments or opinions to share about this information, please feel free to post below.
I also heard recently that blood donation levels at the American Red Cross are at emergency levels for all blood types. This is a crisis in the US, and with all of the current political controversy about our health care system,the public needs to know that one of the greatest ways to make an impact as an individual is to be a donor- whether it is by giving blood, becoming a living donor, or registering as a deceased organ donor. Contact the Red Cross or National Organ Registry for more information.
PS- not much news about the transplant for Patrick as of today. We are still waiting (!) to hear from Wake Forest and Carolina Medical Center about their evaluations. Thankfully, Patrick is feeling MUCH better now that he has been back on hemodialysis for about a month, so some healing has taken place during the time, physically, mentally and emotionally. Thank you, again, for your prayers and support.
with love,
Kate
Friday, August 31, 2012
Friday, August 3, 2012
Where we're at
If you have type O blood and would consider being a kidney donor, or know anyone who would, please look into the following information. Patrick has been in need of a living donor for almost 2 years, and currently is a patient at 4 transplant centers in NC. If you have any interest in finding out more information about being a living kidney donor (aka HERO) you can contact the donor coordinator at any of these hospitals, just follow the links for contact info:
UNC Chapel Hill
Duke University
Wake Forest Baptist Hospital
Carolina Medical Center, Charlotte
All communication between potential donors and the medical staff is completely confidential, to avoid conflict of interest. There are no out-of-pocket expenses for the donor, other than the time taken off work for recovery, which for some employees, will be covered by the FMLA.
Last fall it looked like Patrick would soon receive a kidney from his best friend, Morgan. That did not work out in the timing that we had hoped, and now it is unclear if the transplant between Patrick and Morgan will even be an option. There are still a couple of hospitals doing evaluations (Wake Forest and CMC in Charlotte) but both UNC and Duke have denied Morgan based on a previous prescription, and the process is getting evermore complicated. Please send positive energy, love, prayers, and uplifting thoughts for both Patrick and Morgan, and that the best kidney that he can receive will be found.
This has been a challenging transitional period. Patrick stopped using the penitential dialysis at home about 2 weeks ago. The PD was not working well, he was sick for the entire 3 months that he was on it, and there are a number of factors that may have contributed to why it wasn't working well for him. The bottom line was that physically, mentally and emotionally, using PD was exhausting and had a negative effect on Patrick's well being. He had another outpatient procedure to remove the access from his stomach lining, and insert a second catheter into his chest, and he has now returned to the clinic three times a week for hemodialysis. Patrick knows now that receiving treatments at the clinic is a better option for him- he feels bad when he gets there, but much better when he leaves, and knows that it is working to cleanse his system.
A few days after this procedure, Patrick was back in the hospital with a low fever and treated for an infection, which turned out to be C Dif, and we are unsure how long he's had it or if there are any other related issues. A CT scan last week showed inflammation in his colon, and he has been suffering bouts of nausea and vomiting. Right now he is back at the ER at Rex hospital in Raleigh, where our mom is keeping an eye on him and trying to coordinate with specialists. He will need a colonoscopy soon, as well as further examinations by a nephrologist. It's been a bad week, to say the least, and its hard to have hope when the news continues to be discouraging. But we know that what is meant to be will be and that there are brighter days ahead.
Beginning August 1st, Patrick is officially living with me in Greensboro, though he will still be receiving dialysis either in Burlington, Mebane, or Carrboro, due to the Medicare snafu. Morgan is now living with his family as well, since their lease in Chapel Hill has come to an end. A year ago they rented an apartment to be close to the hospital, thinking that the transplant would happen soon. It is disappointing that the surgery has not yet happened, so the move to a new place is a welcome change and chance to set out with good intentions for the next step in this journey.
We truly appreciate our friends and family who give unending support, and please share this blog widely. It may help to find a donor for Patrick, and certainly the more prayers he receives, the better.
Thank you all.
With love,
Kate
UNC Chapel Hill
Duke University
Wake Forest Baptist Hospital
Carolina Medical Center, Charlotte
All communication between potential donors and the medical staff is completely confidential, to avoid conflict of interest. There are no out-of-pocket expenses for the donor, other than the time taken off work for recovery, which for some employees, will be covered by the FMLA.
Last fall it looked like Patrick would soon receive a kidney from his best friend, Morgan. That did not work out in the timing that we had hoped, and now it is unclear if the transplant between Patrick and Morgan will even be an option. There are still a couple of hospitals doing evaluations (Wake Forest and CMC in Charlotte) but both UNC and Duke have denied Morgan based on a previous prescription, and the process is getting evermore complicated. Please send positive energy, love, prayers, and uplifting thoughts for both Patrick and Morgan, and that the best kidney that he can receive will be found.
This has been a challenging transitional period. Patrick stopped using the penitential dialysis at home about 2 weeks ago. The PD was not working well, he was sick for the entire 3 months that he was on it, and there are a number of factors that may have contributed to why it wasn't working well for him. The bottom line was that physically, mentally and emotionally, using PD was exhausting and had a negative effect on Patrick's well being. He had another outpatient procedure to remove the access from his stomach lining, and insert a second catheter into his chest, and he has now returned to the clinic three times a week for hemodialysis. Patrick knows now that receiving treatments at the clinic is a better option for him- he feels bad when he gets there, but much better when he leaves, and knows that it is working to cleanse his system.
A few days after this procedure, Patrick was back in the hospital with a low fever and treated for an infection, which turned out to be C Dif, and we are unsure how long he's had it or if there are any other related issues. A CT scan last week showed inflammation in his colon, and he has been suffering bouts of nausea and vomiting. Right now he is back at the ER at Rex hospital in Raleigh, where our mom is keeping an eye on him and trying to coordinate with specialists. He will need a colonoscopy soon, as well as further examinations by a nephrologist. It's been a bad week, to say the least, and its hard to have hope when the news continues to be discouraging. But we know that what is meant to be will be and that there are brighter days ahead.
Beginning August 1st, Patrick is officially living with me in Greensboro, though he will still be receiving dialysis either in Burlington, Mebane, or Carrboro, due to the Medicare snafu. Morgan is now living with his family as well, since their lease in Chapel Hill has come to an end. A year ago they rented an apartment to be close to the hospital, thinking that the transplant would happen soon. It is disappointing that the surgery has not yet happened, so the move to a new place is a welcome change and chance to set out with good intentions for the next step in this journey.
We truly appreciate our friends and family who give unending support, and please share this blog widely. It may help to find a donor for Patrick, and certainly the more prayers he receives, the better.
Thank you all.
With love,
Kate
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