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Experience With Organ Transplants? Uncharted Waters . . .


rongo

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I'm a bishop. I had a message a couple of days ago from a couple in Missouri whose son is clinging to life in a hospital in Mesa, AZ. He is a good friend and a former member of the ward who had moved to Texas. A true modern-day cowboy, he has made his living breaking horses, punching cows, shoeing horses, etc. He is one of the most spiritual and profound gospel scholars I personally know, and a very humble man. When the missionaries first contacted him at his house in rural Pinal County in the Sonoran Desert, he was in the process of putting an engine into a truck and told them that there wasn't anything they could do for him unless they wanted to help him put an engine in. To his surprise, they gladly offered and insisted on fully helping, and they ruined their white shirts and slacks with engine grease. He was impressed, took the lessons, was baptized along with his wife, and has voraciously read anything he can get his hands on regarding the gospel since then. He's a deep thinker and a wonderful discussion partner for anything gospel or Church-related. He has good recall of what the Brethren have said, and attends Institute and anything else he can.

He and his wife had marital trouble when they lived here (I don't think she was fully converted), and much of their problems centered around his perceived lack of ambition. She was wealthy and owned 13 Circle K's, so money was not a problem, but she despised the fact that he didn't want to do anything business-related. In addition to working with cows and horses, he cared for a large herd of horses at a dude ranch connected with a casino/resort on an Indian reservation. They moved to Texas and bought a 500 acre ranch, but divorced and she took everything from him. He came back to Arizona and lived with my family for a couple of months while he worked (he came for a big Single Adult Conference in the Phoenix area). He is one of the family for us, but then he went to Missouri and we lost contact with him.

I visited him at the hospital, and we were both overjoyed to see each other after about three years. He had been taking people into the wilderness around Yellowstone on mules as a guide when his heart gave out. He told me (I didn't know this) that he had always had a weak heart his whole life, but hadn't told anyone --- he just worked and toughed it out. The doctors in Montana told him that he needed to get out of the 10,000 foot elevation, so he headed back to Arizona, when he suffered severe heart trouble north of Phoenix. He has been hospitalized for about a week and needs a new heart. He can't even walk to the bathroom without being extremely out of breath.

Here's my dilemma: I've let him know that he can live with us as long as he cares to, but at minimum, he will need oxygen. He won't live long without a transplant, but I'm under no illusions about being able to get one. He isn't insured and has very little cash on-hand. How do waiting lists for major organ transplants work? Realistically, what are his chances, especially without insurance or significant sums of money? More realistically, could something like fast offerings be sufficient to help with oxygen tanks and things like that in the short-term? I don't have any experience with the financials of things like that, but would like to have a better grasp of options and ways and means.

Any thoughts, observations, experiences, etc. in this realm would be greatly appreciated!

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I forgot to mention that he's young ---- in his young 40s, and other than the congenital heart problems, in good health. That's a pretty big "other than that," but he's probably a good candidate for a successful transplant, if one were available and if his lack of insurance and money weren't factors.

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He needs medical advice from a good cardiologist, if he doesn't have one. I'm not a medical professional, so I can't guarantee what I'm saying is accurate, but from what I've heard, ability to pay is not a factor for being put on the transplant list. Also, the closer someone is to death, the higher up on the list they go. Also, his chances are much higher if he is otherwise healthy other than his heart. (For example, no other organs are failing, no cancer, etc.) But for him to get on the list, I think his cardiologist and the hospital have to certify that he would likely survive the transplant operation and that he is a good candidate based on a list of medical factors, and he has to undergo a long battery of tests. So he needs a good doctor who will be an advocate for him. Also, not all hospitals do transplants. If his hospital does not, I think he needs to be referred to a transplant center.

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I dont know that money is a factor in getting on the list but it is a hard fact of life that he may not get one due to no insurance. I would ask a transplant team for advice on this. One thing to think about it tthat they may have ideas on how to get it financed. No doubt they have been through this before. The trick here is to get started with that team NOW. Dont wait another day.

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Lack of insurance isn't a consideration for transplant, but lack of insurance may lead to other medical problems that limit the options for the transplant patient. The heart itself is free but pre and post operation, and related costs can be a substantial burden on the family, average cost in 2007 was in excess of $600,000 USD.

Unti recently life time coverage limits with most insurance companies limited the use of insurance for heart transplants.

Edited by thesometimesaint
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it may not be an factor in the transplant but it would be a big surprise if it isnt a big factor in actually getting anyone to do it. googling it does not show transplanting costs of dr or hospitals as free or sliding scales anywhere.

Medicare may pay for it if he is already on it. Otherwise it may possibly be a 2 year delay.

Here is a place that apparently helps find pledges for transplants. http://www.ntafund.org/

Here is a list of medicare approved hospitals for transplants: https://www.cms.gov/...01_overview.asp

This looks to be an excellent source of info and includes some links for help with costs. http://www.ehow.com/...plant-cost.html

Ok this is the motherlode it looks like to me. Hope it helps a lot! :http://www.transplantliving.org/beforethetransplant/finance/costs.aspx

Still looking so might find more.

Edited by annewandering
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I'm a bishop. I had a message a couple of days ago from a couple in Missouri whose son is clinging to life in a hospital in Mesa, AZ. He is a good friend and a former member of the ward who had moved to Texas. A true modern-day cowboy, he has made his living breaking horses, punching cows, shoeing horses, etc. He is one of the most spiritual and profound gospel scholars I personally know, and a very humble man. When the missionaries first contacted him at his house in rural Pinal County in the Sonoran Desert, he was in the process of putting an engine into a truck and told them that there wasn't anything they could do for him unless they wanted to help him put an engine in. To his surprise, they gladly offered and insisted on fully helping, and they ruined their white shirts and slacks with engine grease. He was impressed, took the lessons, was baptized along with his wife, and has voraciously read anything he can get his hands on regarding the gospel since then. He's a deep thinker and a wonderful discussion partner for anything gospel or Church-related. He has good recall of what the Brethren have said, and attends Institute and anything else he can.

He and his wife had marital trouble when they lived here (I don't think she was fully converted), and much of their problems centered around his perceived lack of ambition. She was wealthy and owned 13 Circle K's, so money was not a problem, but she despised the fact that he didn't want to do anything business-related. In addition to working with cows and horses, he cared for a large herd of horses at a dude ranch connected with a casino/resort on an Indian reservation. They moved to Texas and bought a 500 acre ranch, but divorced and she took everything from him. He came back to Arizona and lived with my family for a couple of months while he worked (he came for a big Single Adult Conference in the Phoenix area). He is one of the family for us, but then he went to Missouri and we lost contact with him.

I visited him at the hospital, and we were both overjoyed to see each other after about three years. He had been taking people into the wilderness around Yellowstone on mules as a guide when his heart gave out. He told me (I didn't know this) that he had always had a weak heart his whole life, but hadn't told anyone --- he just worked and toughed it out. The doctors in Montana told him that he needed to get out of the 10,000 foot elevation, so he headed back to Arizona, when he suffered severe heart trouble north of Phoenix. He has been hospitalized for about a week and needs a new heart. He can't even walk to the bathroom without being extremely out of breath.

Here's my dilemma: I've let him know that he can live with us as long as he cares to, but at minimum, he will need oxygen. He won't live long without a transplant, but I'm under no illusions about being able to get one. He isn't insured and has very little cash on-hand. How do waiting lists for major organ transplants work? Realistically, what are his chances, especially without insurance or significant sums of money? More realistically, could something like fast offerings be sufficient to help with oxygen tanks and things like that in the short-term? I don't have any experience with the financials of things like that, but would like to have a better grasp of options and ways and means.

Any thoughts, observations, experiences, etc. in this realm would be greatly appreciated!

I had a liver transplant in 1999. I you would like to talk in more detail, email me and I would be happy to offer any assistance I can. Briefly, without insurance this is be very difficult. After transplant his monthly drugs will total about $1500/month.

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Thank you, all, for the suggestions and ideas (thank you especially, annewandering for the kind PM and Storm Rider for the offer of more detail through email). I spoke at length with him today, and he had a very rough day. He is being transferred to the Mayo Clinic where they have better cardiac facilities, but it appears that the weapons at our disposal are not working very well at keeping his heart going. They had a scare today, and he's on a high level of oxygen (I forgot what the levels were, but they're high and his saturation levels are very low). The strange thing is, to all appearances, he's the picture of health --- other than his very bad congenitally-defective heart. He is handling everything philosophically, and it's amazing to see him be gentlemanly and courteous to all of the nurses and doctors coming and going, with his Texas drawl. I'm working on getting him things to read and do to spend the time (all he's had with him this week is his scriptures).

The good news is I found that oxygen equipment is much less expensive than I thought. The equipment runs about $200 a month, with oxygen tanks running $22 per x however many are needed. That seems very doable, although not a long-term solution.

He is on the waiting list for a heart, and from what I've learned, the prime factor will be tissue matches. We'll worry about the astronomical cost of things, including immuno-suppressants if there is a transplant, if and when we come to them.

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