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Charlene
Member
Username: Charlenevp
Post Number: 11
Registered: 08-2010
| | Posted on Thursday, August 26, 2010 - 09:56 am: | 
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As I have been expressing since recently joining here. My family is so fortunate to know my brother's Bryan's liver recipient Mark.
It just so happened that Mark and my parents had a person who stepped in and acted as the third party and brought them together,
Till that day, Mark and his family wrote us letters through the organ donation foundation that we never received. We wonder if Bryan's other recipients have also done the same with the same result.
From what I've been reading, this seems to be a much to common thing..?
What can be done? My sister is contacting the organization to inquire about Mark's letters and any others that we have not recieved. It would seem that just our consent would be needed.
What can be done, what needs to be done? Are there any advocate groups, any petitions for change, any lobbying, and specific organization that is working on changing the system being used for communication between donor families and transplant recipients?
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 14243
Registered: 05-2003
| | Posted on Thursday, August 26, 2010 - 11:01 am: |
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Hello Charlene.
I am not sure if this is the correct answer so here goes. I believe that each organ procurement organization has their own rules. I would definitely write a letter expressing the desire to receive contact. Let us know what you hear.
You are quite a beautiful lady. I read your blog. Thank you for creating one.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital
Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute
Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine
Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise' |
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BreathinSteven
Forum Leader
Username: Breathinsteven
Post Number: 2144
Registered: 11-2004
| | Posted on Thursday, August 26, 2010 - 11:53 am: |
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Hi Charlene!!!
It is disappointing to hear when things don't work smoothly -- and especially when letters are not passed along between recipients and donor families... Knowing that often times donor families and recipients are desperately waiting for communication from one another -- hearing that a letter or card was sitting on a desk or in a file can feel devastating...
What can or needs to be done is a very difficult and complex question, because the system and components are complex... There is not a central repository for this information -- and there really cannot be one... Though allocation and "the list" is maintained by UNOS/OPTN -- procurement and distribution of organs is really handled at the OPO / Organ Procurement Organization level -- they really maintain records of donors as well as the recipients who ultimately received the organs...
The OPO's primary responsibility is to procure and accommodate delivery of organs -- they take on the responsibility of coordinating communication between recipients and donor families too, and they seem the obvious choice for that because they maintain the records relating to the donation... One issue/factor/problem is that the regional OPOs are funded at drastically different levels -- some have relatively high funding and have substantial funds available for dealing with this communication -- others really do not... As you might imagine -- an active OPO might have several staff members to deal with donor family relations and that can be a relatively high budget expense... Smaller OPOs may not be able to dedicate a great deal of expense to this process...
Another factor can be the transplant hospital's involvement... Patients at some clinics are directed to their local OPO. Other clinics may act as an intermediary and letters may be directed to someone in the clinic, who then passed them on to the local OPO or the OPO involved in the procurement of the organ -- that adds another level of bureaucracy to the whole situation -- now you may be dealing with a transplant coordinator nurse, or procurement coordinator at the hospital to review and pass on to the OPO... Basically, another desk or inbox where a letter can be delayed, misplaced or lost...
The vast majority of these letters are handled properly and timely -- but even if a small percentage of letters nationwide are mishandled, that can be hundreds of letters...
The economy hasn't helped matters either... All businesses, including healthcare and OPOs are tightening their belts and looking at necessary and unnecessary expenses -- I don't think they will ever see this communication as "unnecessary" expense, but it must be looked on as less necessary as actually procuring and saving lives... So when cuts or reductions are considered -- it's not difficult to imagine they would be quicker to reduce staff coordinating this communication before cutting staff responsible for processing organs...
I think the biggest hurdle here is the fact that, though we are dealing with very common communication between recipients and donor families for a very specific kind of gift -- we are having to deal with around 50 primary organizations responsible for processing this communication (OPOs), and possibly hundreds of secondary organizations that also have a hand in processing this communication (transplant centers/hospitals)...
Petitioning / asking UNOS/OPTN to require consistency among the OPOs and hospitals may be an option -- but that would also put a strain on already tight budgets and possibly divert funding from actual procurement and promoting donation awareness...
Love, Steve
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Charlene
Member
Username: Charlenevp
Post Number: 15
Registered: 08-2010
| | Posted on Thursday, August 26, 2010 - 12:15 pm: |
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Thanks Steve, yes I do understand. It's the bigger picture thing that does count. On an more emotional and personal level though, red tape, protocol and all that...can seem to be such a hurdle or a wall.
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 14247
Registered: 05-2003
| | Posted on Thursday, August 26, 2010 - 12:47 pm: |
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Thank you STEVE! I knew we could count on you for a proper explanation.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital
Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute
Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine
Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise' |
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Charlene
Member
Username: Charlenevp
Post Number: 16
Registered: 08-2010
| | Posted on Friday, August 27, 2010 - 10:23 am: |
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Absolutely, a great reply....something to bookmark for sure.
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4766
Registered: 07-2007
| | Posted on Sunday, August 29, 2010 - 09:21 pm: |
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Charlene:
Great question! One that I have often wondered about. I sent my donor family letter in July and I try and forget about it because I know that "if" I get a response it will probably take months before I hear anything. It's soooo hard to wait.
I am so thankful that you have at least one recipient to communicate with. I pray that at some point that you hear from the other recipients.
It makes me feel so good to know that as a donor family you really do want to hear from the recipients. When I was writing my letter, I wanted to be so careful so that my letter was a comfort to them and not a reminder of what they lost. I pray that my letter will be a comfort to them.
Thank you again for joining Tx Buddies and sharing your brother with us. It is really wonderful for me to hear from donor families because I am in awe of your generosity and selflessness. Thank you for giving life!!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4767
Registered: 07-2007
| | Posted on Sunday, August 29, 2010 - 09:23 pm: |
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Steve:
What a great explanation!! You always make things so clear.
Thank you!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 14336
Registered: 05-2003
| | Posted on Wednesday, September 01, 2010 - 02:28 pm: |
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How is Charlene?
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