This makes no sense to me at all!

[MrsFishy]

Ok, so I am all set for April 6th to go in for a full day of screening.....EKG, CT scan of my kidneys, blood work, meet with a psychologist, physical exam, etc.  This will be done in Minneapolis (I live about 90 minutes from there).  I explained that I will be over there 3 times in March for business and would have time if they'd like me to stop in and do the blood work 1st.  Wouldn't it seem logical to make sure NOTHING turns up in my blood work before spending huge amounts of money on things like EKG's and CT scans?  They said, "No, we prefer to have it done all at one shot so nothing gets lost".  LOST?!  That doesn't instill a lot of confidence in me to go thru this place if they can't keep track of their info. on a specific person unless it's all done on the same day!  AND, what a horrendous waste of money!  If I am volunteering my time to come in at a separate time to have labs drawn first and the rest done later, WHY would they not take advantage of this?!  I also was trying to donate to a specific person but he had too many antigens against me so I am trying to still help him through a Paired Exchange.  So, is all of this going to be billed to HIS insurance then?  That's just not right!  I expect that everything will turn out fine but I am also realistic in that things can easily turn up in blood work that a person would have no way of knowing about that could disqualify an organ donor....elevated TSH, high blood sugar, etc., etc.  Why WOULDN'T you start with the easiest, least expensive diagnostics first?!

THEN....I find out today that my insurance won't pay for a mammogram until I'm 45 (I'm 42).  This is something that is required to be done by the donor as a term of being able to donate.  I explained to the tx coodinator that my insurance won't pay for it and asked if that meant that I would have to pay for it and she said, "Yes, we do not cover that expense".  I have called in my area and the cost ranges between $400-600.  It's not that I CAN'T afford it but my husband agreed with me doing this IF it wouldn't involve any out of pocket medical expenses to US.  Now it doesn't seem that will be the case. 

VERY frustrated!

[MooseMom]

Well, you have learned the lesson that all of on the waiting list have learned, that nothing is easy and that there are more hoops to jump through than you can count on one hand.

Actually, there are all kinds of lessons to be learned here!  LOL!  One more lesson is that information gets so easily lost in a transplant center, and that is why it is absolutely imperative that you keep a copy of every single bit of communication and every lab result. 

Another lesson...transplant centers think they are the font of all wisdom, and it is their way or the highway.  Sometimes if you have a really good coordinator and can present your argument in a logical fashion, they will grant you some wiggle room, but on the whole, they have you by the short and curlies.

They probably dedicate only certain days per week for transplant evaluations.  I know mine does...Thursdays after 12 noon.  That's probably why you can't just breeze in any time you want to have your blood drawn.

Tx centers do not cover expenses of any kind; they BILL for expenses!  I guess this is your first hurdle.  I suggest approaching your insurance carrier and seeing if they would cover a mammogram under these circumstances.  You won't know unless you ask.

If you are part of a paired exchange or a change, I really don't know whose insurance will be billed, but I don't think it will be yours.  The whole idea is for the altruistic donor not to be responsible for any medical charges.

[cariad]

I can suggest a few things: 1. talk to the man that you are attempting to help and suggest that he find another transplant center that will cover this test (or waive it) and suggest he go there. 2. Ask if this person is willing to pay for it. 3. Connect with a provider such as Planned Parenthood or your Health Department to see if they can suggest anywhere you could go to receive this service for free. 4. (all else failed and if you really want to go the distance with these people) contact the hospital administrator or someone else above the coordinator and/or a local media outlet and tell them your story. Perhaps someone will see sense and intervene.

I have to wonder if this coordinator really knows what she is talking about. My husband never spent a dime on any required screenings or the actual surgery itself, the only contingency was that he needed to have the tests done at the transplant hospital. Anyhow, I would stick to your decision on this. You should NOT be out of pocket for this.

[MooseMom]

Those are good suggestions, Cariad!

[MrsFishy]

 I don't know why on earth my insurance company would ever agree to the cost of mammogram so that I can donate an organ to a complete stranger. I just don't think that's realistic and I would just get laughed at. They already told me the ONLY exception is if my doctor would order it as a diagnostic for medical necessary purposes and cite the reason for the necessity (ie. lump found, etc). 

I don't think the person I am hoping to help thru a Paired Exchange (who doesn't even know anything about this....or ME...yet) would go to a different transplant center. This is near where he lives and is known for being one of the best in the country for kidney transplants.  I doubt he'd go somewhere else just because of a $400 mammogram not being covered.  If it came down to that, I'd make sure the tx coordinator let him know that this test that THEY require and won't pay for could be the only thing standing in the way of him getting the kidney he needs. 

Lastly, I will first jump thru the hoops of all of their tests and see if everything is still a thumbs up at that point. If it is, I will find a way to get the mammo done one way or another.

Thanks for the info about how frustrating the process can be.  Having a place to come vent helps!!!

[MrsFishy]

Oh, and I did check into free or reduced cost mammas for people who do not have insurance (or, in my case, insurance that won't cover it) and you have to be 45 or older to qualify. :/

[MooseMom]

That's a good idea...get the other tests done first, and if everything looks OK, THEN worry about the mammogram.  Will HIS insurance cover it?  It should; most policies cover all expenses incurred by a donor, so maybe you can explore this option.  Do you think there's any chance he would pay for it out of pocket?  Or maybe split the expense?  Surely something can be worked out.  I'm curious to find out how you deal with this; I've never heard of this problem before, but that doesn't mean it is uncommon.

[MrsFishy]

I'm thinking it may be uncommon because I know it's uncommon for health insurance companies to NOT pay for mammography starting at age 40.  I find it odd too because in all other aspects, we have GREAT coverage. :/

That's a great idea to see if his insurance would pay for it but I honestly don't know if they will pay anything for ME since I would not be HIS donor. Maybe the recipients insurance would pay but I wonder if that's something that takes weeks, months, or years to find!  I also don't know that if months go by and they have NO prospects for a Paired Exchange for me to donate to that I might not just find another person who needs a kidney.  This is part of why I do not want this recipient to know I am going thru all of this to try to help him. Plus, i don't want him to get his hopes up if something turns up in the screening that disqualifies me.

[Poppylicious]

My experiences are UK based so they're completely at odds with yours (in both financial/insurance and testing terms).  I have no idea how insurance works, but I'm just wondering if one of the issues is that you want this to be a directed altrusitic donation rather than a non-directed altrusitc donation.  Does this change things insurance wise, especially because it will have to be a paired exchange donation? Presumably if you had found you were a match you would have been advised to let him know and thus the insurance companies would have become involved by now. Also, if you'd initially gone to the transplant centre and said you wanted to altrusitically donate to the best matched person on the list, would the mammogram fee have been waived?

I suppose what I'm clumsily asking is, if you now want this to become a smoother process, do you need to let him know that you're being tested with a view to him being involved in a paired-donation success story!?  I know you don't want him to know, but does he NEED to know so that all these little creases can be ironed out?

I hope you find a way to jump this hurdle!  It must be so frustrating for you.

[MrsFishy]

The transplant center had sent me an info packet from the beginning and it stated that all donors must provide a recent physical (within the last 12 months) and men and women over the age of 50 must have had a colonoscopy within the last 5 years and women age 40 and over must have a mammogram within the last year.  Those are the only things that the donor is responsible to provide and have their own insurance cover.  I had no problem with that but when I found out that my insurance DOESN'T actually pay for any routine mammograms until I'm 45, that would mean I'd have to pay cash out of pocket.  I figured the donor center would say it wasn't a problem and they'd take care of it.  :/  It does not matter though if I'm a directed or non directed donor.....they won't pay.  I hae emailed the tx coordinator a couple of times now and she is going to bring the situation up before a donor committee to see if they will cover the expense if all of the other tests they do on me indicate I'd be a good candidate.

The only reason I don't want this guy to know yet that I am hoping to help him is I do not want him to get his hopes up unless I KNOW I am mdically cleared to donate.  That is just too big of a thing to get someone's hopes up on!  If all of the testing goes fine and the mammogram is still an issue, I will at that point contact him and set up a time to meet and discuss the situation. 

[cariad]

The transplant center had sent me an info packet from the beginning and it stated that all donors must provide a recent physical (within the last 12 months) and men and women over the age of 50 must have had a colonoscopy within the last 5 years and women age 40 and over must have a mammogram within the last year.  Those are the only things that the donor is responsible to provide and have their own insurance cover.  I had no problem with that but when I found out that my insurance DOESN'T actually pay for any routine mammograms until I'm 45, that would mean I'd have to pay cash out of pocket.  I figured the donor center would say it wasn't a problem and they'd take care of it.  :/  It does not matter though if I'm a directed or non directed donor.....they won't pay.  I hae emailed the tx coordinator a couple of times now and she is going to bring the situation up before a donor committee to see if they will cover the expense if all of the other tests they do on me indicate I'd be a good candidate.

The only reason I don't want this guy to know yet that I am hoping to help him is I do not want him to get his hopes up unless I KNOW I am mdically cleared to donate.  That is just too big of a thing to get someone's hopes up on!  If all of the testing goes fine and the mammogram is still an issue, I will at that point contact him and set up a time to meet and discuss the situation.

I haven't read your whole story so I am not completely up to speed on your relationship (or lack of) with the potential recipient, but personally I would want to know if someone were doing this on my behalf. I know it might sound demented, or at least completely ungrateful, but there is always a chance that a recipient will have personal reasons for not wanting to accept a donation from someone. Yes, I suppose it is a big thing to get someone's hopes up over, but if the worst happens and you cannot do it, perhaps he would be happier and more hopeful going forward if he knew someone cared enough to try. I am all about patient autonomy and agency, so to me (and this is only me and I hope you do not take it as a slight against you) I would resent not being let in on the process. If you do pass all the tests and he has some personal reason why he would not want to go through with this, that is going to make it all the more difficult to refuse this gift because you've already put yourself out so much. It is a deeply, deeply, cannot be overstated how deeply, personal thing to accept another living human's organ. I understand that it won't even be your kidney that he will be offered, but still, I would want to know if someone had stepped up and would want some say in whether or not I am comfortable with the whole arrangement.

Sorry, I really don't mean to be cold about this. I can tell your heart is in exactly the right place, a place of rare generosity, and this only comes as a suggestion from my own place of concern and putting myself in your potential recipient's place.

That aside, I know which hospital you speak of - there could really only be one - and there is a difference between having top statistics (which can be fairly well engineered by a transplant centre) and being a great hospital because you treat all the patients, donors and recipients, with humanity and dignity. I sort of collect patient accounts of transplant hospitals (in my head) as a pastime, because I think there is a limit to what you can learn by looking at US News and World Report and listening to the doctors boast about themselves. The patients with the experience are the ones that I prefer to listen to, and so I love having the wealth of experience here to draw upon. I know of at least one long-standing member who has a very difficult story from that hospital. Granted, it is just one story, but I do try to warn anyone who is going to pick a hospital and put their life in its hands that there is a crucial element that cannot really be measured that one should always take into account. This is not to say I think you should change hospitals - you sound comfortable with the potential recipient's choice, and since it is convenient to him and you, that is of top importance.

One last suggestion: go to livingdonorsonline.org and tell them your situation and see if they have ideas. You may also find other live donors who have experience with that hospital, or at least one who can offer general tips.

Thank you for all the effort you are putting into helping this young man.

[MooseMom]

Oh Cariad, once again, you bring up a good point.

Mrs. Fishy, at first I thought it was fine and noble for you to want to spare your friend any potential disappointment (and I do think it is fine and noble), but Cariad is right in imagining that it is entirely possible that for reasons of his own, your friend may feel pressured into this arrangement that you have initiated without his input.

Believe me when I say that just knowing that you have gone as far as you have down this road will make your friend feel so special and so cherished.  Yes, he would probably be disappointed if, in the end, you could not donate, but I promise you that his disappointment will be fiercely blunted by the knowledge that you TRIED.

After rereading Cariad's post, I encourage you to confide in your friend.  He deserves to know your intentions so that he can begin his own psychological preparations.  This is HIS LIFE that you are seeking to change, so he needs to know.  And you deserve the opportunity to be thanked.

[MrsFishy]

Cariad, you have brought up some amazing points that I NEVER thought of!  Thank you for your thoughts and input.  Now I have more to ponder.
Also, is there a lnk you could share of the person's bad experience at this hospital?  If for no other reason, it may make me learn of what things to be cautious of and better prepared for.

MM, He is not my friend.  I have never met him or know who he is.  I will post my story of how I selected him in it's own thread in this forum. 

[cariad]

Here is the story I was thinking of: http://ihatedialysis.com/forum/index.php?topic=10396.0

I don't know that it was anything but impossibly bad luck, although I do remember her once saying that Matas is a jerk, and I thought that that could not possibly be good. Every transplant hospital has its jerks I suppose, but one would hope not the director who should really be setting the tone of the place. I have found in my years here that a doctor that I cannot stand could well be someone else's dream physician, and the reverse as well, so I keep that in mind as I read all of these different reports from the trenches.

Glad to hear that you already are familiar with livingdonorsonline. It's a complicated situation you're in for sure. Wishing you the best!

[Cordelia]

OMG, how I wished for you that you lived in Ontario, Canada where I live. Okay, our  medical system is not perfect here, out wait times here can be long but at least our healthcare is covered up here, free of charge.

[okarol]

If you haven't already, I wish you would post your question about Medicare or the recipients private insurance covering the mammogram on Living Donors Online - I'll bet other donors would share their own experience. http://livingdonorsonline.org/ldosmf/index.php

[MrsFishy]

That's a good idea, okarol.  I'll do that this weekend.