Gift of Hope boxes

[MooseMom]

I guess this is for pre-dialysis people who are on the list, so if this should be moved to the Pre-dialysis section, feel free!

You know the Gift of Hope boxes we get every month with the vial you have to send back with your blood sample?  The organization that does all of this is called "Gift of Hope" in these parts...it's probably called something else in other bits of the country.  Anyway, I've been getting these boxes like clockwork, every month around the 13th-15th, for a bit over a year.  I keep a record of the date I receive each box and the date I provide my sample and return it.  (Yes, I really do keep record of that. )

I haven't received my box yet for this month.

I'll contact my tx coordinator on Monday to make sure there is no problem, but in the meantime, I'd like to know what happens if you miss a month?

Can anyone think of a reason why I would suddenly not receive my box?

I miss my box.

[cariad]

Call them. This information is over a year old, but they claim that they will let you miss one month and then take you off the list if you miss a second.

This is clearly an error that was no fault of your own, and you should not be penalized for it.

I am thinking mail issues with the holidays and the chaos of a post office that is fighting for its life. However, they could also have mixed you up with someone else, and perhaps that someone else received a transplant or was made inactive or has initiated dialysis and now gets their boxes sent to a clinic.

All sorts of possible explanations, none of them good, though. Hopefully, your coordinator will know what to do. Good luck with the medical bureaucracy!

[MooseMom]

All sorts of possible explanations, none of them good, though. Hopefully, your coordinator will know what to do. Good luck with the medical bureaucracy!

I've already emailed my coordinator, so when she arrives at her desk tomorrow morning, my email will be in her in-box.  But yeah, it's one more bureaucratic mess that I don't want to have to sort out.

I have corralled the contact info for GOH and thought about calling them, but it occurs to me that I could be anyone; why should they take directions from me?  I suspect that when it comes to people on the list, they're not going to want to talk to patients, rather, they'd want to cover their butts and talk only to the relevant tx center.  Could be wrong about that, though.  Thoughts, anyone?  Thanks.

[ToddB0130]

I'm not yet on the list so I'm not familiar with the GOH ........... can't you just go and get bloodwork done and mail in those results if they failed to send you their box ??  Won't it count if you maintain a regular schedule of bloodwork (even if they didn't send you their vial) ??  Sorry I'm not yet familiar with this process .........Sounds fun .............NOT !!!

[MooseMom]

I'm not yet on the list so I'm not familiar with the GOH ........... can't you just go and get bloodwork done and mail in those results if they failed to send you their box ??  Won't it count if you maintain a regular schedule of bloodwork (even if they didn't send you their vial) ??  Sorry I'm not yet familiar with this process .........Sounds fun .............NOT !!!

There are no real "results" per se.  They just need to have a recent/monthly sample from me to test for crossmatching if a donor kidney comes available.  You have to return your sample in the vial they provide.  But the most important thing about the box is that they include bits to make mailing in biohazardous material (like blood) conform to legal restrictions.  It is illegal to just mail a vial full of blood in an envelope or something.  So, I NEED MY BOX!

I did, however, send a second email to my coordinator, reminding her that I have worked really hard to get on the list AND to STAY on the list and that I do not want some bureaucratic snafu to ruin my chances for a transplant.

[fearless]

MooseMom, if you've been sending your monthly sample for a number of months, then missing one month will not be a big deal.  Especially if they didn't get the tube to you.  That is the thing I'd want to follow up on: that is, why didn't you get your tube this month?  You just want to be sure you get one in time to not miss a second month.  But even then it's not the end of the world.  But it's probably a nuisance to get back on track.  I don't know what the policy is on getting kicked off and getting back on the list.  I know you only lose the time you were non-compliant - you don't have to start all over that is.

[cariad]

MooseMom, if you've been sending your monthly sample for a number of months, then missing one month will not be a big deal.  Especially if they didn't get the tube to you.  That is the thing I'd want to follow up on: that is, why didn't you get your tube this month?  You just want to be sure you get one in time to not miss a second month.  But even then it's not the end of the world.  But it's probably a nuisance to get back on track.  I don't know what the policy is on getting kicked off and getting back on the list.  I know you only lose the time you were non-compliant - you don't have to start all over that is.

Um, not to start an argument, but the letter I received from Gift of Hope said specifically that you miss more than one month, they take you off the list, which, when you are waiting for a cadaver transplant, is in fact the end of the world. You could miss the perfect kidney during that time.

Plus, let it slide once without bringing it to their attention and the next time it happens they will already have record of you being supposedly non-compliant.

MM, Chris was taken off the list for a while because they had him mixed up with someone else. I think it was UNOS' mistake, but it hardly matters when they TOOK HIM OFF THE FLIPPING LIST. You are doing the right thing by keeping on your coordinator until it is sorted. 

[MooseMom]

Should I be going through my tx coordinator to right this situation, or should I contact GOH itself?  I've been to their website and have their contact details, but the information on the site seems to be more geared to potential donors than to people already on the list.  Like I've said, I've already emailed my coordinator...is this enough?

This sort of thing really pisses me off.  It makes me feel like I'm herding cats and that I have to do everyone's thinking for them.

[fearless]

i would contact them directly.  When I got on the list, they failed to begin sending me those boxes until i called them.  Apparently someone had made a mistake.  The person I spoke to explained some things and I started getting my boxes after that.

cariad,
you are correct.  If you miss more than one month you are taken off the list.  So whatever you have to do to get back on, you'd want to do it quickly.  But for me it doesn't help to look at things as being life or death.  (saying you could miss the perfect kidney - it's just as possible that you might have been called for one that was not so perfect, and being off the list for a couple minutes prevented that, because the perfect kidney was due to arrive the moment you got back on the list!)   It's important to do your duty to yourself - and meet every requirement on your side of the equation, but if something gets off track, you just need to get it back on track, without worrying that every mis-step is the end of the world.  There are too many opportunites for mis-steps along the way in this journey.  Getting hung up on making every one of them a huge problem is counter-productive (in my humble opinion)
cheers

[ToddB0130]

Can they give you an extra one or two of the "boxes" ... I don't really know what is in them, so maybe the contents in the vial 'spoil' or 'expire' ?

[MooseMom]

Can they give you an extra one or two of the "boxes" ... I don't really know what is in them, so maybe the contents in the vial 'spoil' or 'expire' ?

There is some stuff in the vial already.  I don't know what it is, but I do know that if you are on dialysis in a clinic, you get your sample taken there, and then the clinic is supposed to spin it in the centrifuge before sending it off.  Home patients don't have to spin it.  But that's a good question about the stuff spoiling.  I don't know, but I'll ask just out of curiosity.

I guess they theoretically could give me an extra box, but I'm sure they have special systems in place and don't want to deviate from that.  Each box contains instructions (the same instructions each month) but also has a date by which you have to have your sample returned, so if they sent more than one box, then the date requirements might get all wonky, if you see what I mean.

If I don't hear from my coordinator by, say, 3:00 tomorrow afternoon (Monday), I'll give GOH a call.  I'll let you all know what I find out.  It's just weird that after 15 months, I get no box.  I'll get it all worked out; it's just that I shouldn't have to clean up other peoples' messes and errors, kwim?  Whine, whine, whine...

[cariad]

i would contact them directly.  When I got on the list, they failed to begin sending me those boxes until i called them.  Apparently someone had made a mistake.  The person I spoke to explained some things and I started getting my boxes after that.

cariad,
you are correct.  If you miss more than one month you are taken off the list.  So whatever you have to do to get back on, you'd want to do it quickly.  But for me it doesn't help to look at things as being life or death.  (saying you could miss the perfect kidney - it's just as possible that you might have been called for one that was not so perfect, and being off the list for a couple minutes prevented that, because the perfect kidney was due to arrive the moment you got back on the list!)   It's important to do your duty to yourself - and meet every requirement on your side of the equation, but if something gets off track, you just need to get it back on track, without worrying that every mis-step is the end of the world.  There are too many opportunites for mis-steps along the way in this journey.  Getting hung up on making every one of them a huge problem is counter-productive (in my humble opinion)
cheers

fearless, it looks like we are going to have to agree to disagree. Without blowing this up into a huge issue, your attitude is fabulous when things have already gone wrong and there is nothing to be done, but I think minimizing the possibility of being taken off the list when there is plenty of time to address this before it gets to that point does no one any service. I know MM well enough to know that she would be on this at the first opportunity, so I don't worry that she will let this go for even a moment. However, we have loads of people reading here who never post, and for them, just to be crystal clear on this point: being taken off the list is a big deal. You have every right to call these people, find out what happened, and then raise holy hell if they made a mistake. Or don't, everyone has their own style. It is bad enough that they send those insulting letters threatening you with expulsion from the list from the word go, what sort of consequence awaits them when they miss a week, a month, a year of tubes?

I am not making 'every one of them a huge problem' so I rather resent the implication that I am sitting around looking for things to rile people up over. I am answering MM's question and affirming her suspicions that this situation is not on. I will always encourage patients to take these issues very seriously because 99 times out of 100, they are going to hear the very things that you are saying from the bureaucracy: it's no big deal, don't worry about it, it's just one tube, people make mistakes. By the way, no one is taken off the list for just a few minutes.

Huh, MM, I did not know about the spinning. My GP's office always drew my bloods, and I don't think they even owned a centrifuge. Wonder if that affected my results somehow?

And I totally get what you mean about not wanting to do other people's work for them. That is what I say to insurance companies all the time, when they try to tell me I need to make all sorts of phone calls to figure out who messed up what where - gee, that sounds like your job, the one you're paid for, the one our premiums are funding....

[MooseMom]

I received a reply first thing this AM from my tx coordinator who basically said, "Call Gift of Hope."

For those who want to know a bit more, my coordinator told me that it is the tx center, not Gift of Hope (or the equivalent in your state/area) who determines your list status.  She said that if patients have trouble receiving their boxes, she encourages then to call GOH (see, I was wrong about this).

She also said that they don't like to talk with patients about what happens if they miss a month as they don't want to trivialize it, but she said that if you miss a month, your name will still come up for a donor offer.  If you miss a second month, though, a code will come up to red flag you, and you will not be offered a kidney until a new sample has been received.

She gave me the name and number of GOH's lab assistant, so I called and of course had to leave a voicemail.  I HAVE ascertained that she IS in the office today and has not taken an early Thanksgiving holiday, so I hope to hear back from her by the end of the day.  Maybe I will get my box today after all, who knows?  It would be nice because I have an appt tomorrow for my regular labs, and I'd like to do both draws at the same time.

Just by way of informing anyone else who might want to know, the lab will do the spinning for me, but it takes 45 minutes, so that means I'd have to return to the lab to pick up the spun sample, and I don't want to waste my time on that.  For home patients, spinning your sample is not required, so I don't bother, being the lazy toad that I am.

[MooseMom]

You may now go back to your regularly scheduled lives; you can sleep happily in your beds tonight.

My box just arrived.

Thankfully, Gift of Hope is more efficient than the Super Committee.

[fearless]

YAY!  So glad you're back on track MooseMom!

PS - when I was on PD the clinic would do blood draws once a month.  I would take the box in with me, they'd draw the blood, spin it, package it up and mail it!  I just had to remember to bring the box   

During the 20 months I've been on the list, I've missed a couple of months because the blood draws weren't scheduled before the time I was supposed to mail the box back.  I always got another box the next month, and everything has been OK.  But I guess I shouldn't encourage everyone that they will have as good of an experience as I have had so far.  I just wanted to help you not be too upset because the box hadn't appeared.   Ya just gotta keep keepin' on!

[fearless]

cariad,
I'm sorry i implied you were making a big issue out of anything that isn't really a big issue.  You're right: it's a big issue!

By way of apology, let me just say that, for me, I've had to learn to do what needs to be done to try to help myself without getting angry, upset or worried, because those things affect me very negatively.  But I should keep in mind that others handle such things better than I do, and maybe are even motivated by such emotions.  So yes, if that is a disagreement between us, we will agree to disagree.

But please accept my apology for my mistaken implications.  Again, you are right and I was wrong.
Thank you cariad

[MooseMom]

I've had to learn to do what needs to be done to try to help myself without getting angry, upset or worried, because those things affect me very negatively.  But I should keep in mind that others handle such things better than I do, and maybe are even motivated by such emotions. 

See, now, I wish I could be like you, I really do.  I'm a lot better than I was, say, 2 years ago, but every once in a while, something will just hit me the wrong way, and I might make too much of it, especially if it is a "new" problem.  Like this box thing...what worried me was not being kicked off the list, rather, what concerned me was that there was some computer error, and we all know how difficult it is to correct a computer error.  Too many bureaucrats think that if information is spit out by a computer, then it must be right!  It just seems that lately, the majority of stuff in my life has morphed into some huge problem!  I didn't want to have to spend months trying to get my stupid boxes again.   But all is well in MooseWorld.  So, thanks, cariad, for not trivializing my concerns, and at the same time, thanks to you, fearless for making me feel a lot better and reminding me to calm down!  I'm the first to admit that I need to hear those words at regular intervals!   

(Sometimes you just don't know when some small thing will become a big issue, you know?)

Anyway, thanks everyone!

[fearless]

i should confess: although my motto is to be calm, cool and collected, I do often still get upset when things go wrong.  For me it's about raising the level of what gets to me, and then getting over it faster.  It's definitely a continuing practice.  And, because it is, I should never criticize or imply anything about anybody.  We're each on our own path, and it's not like mine is better or more mature than anyone else's - it's just different.  I'm just so glad we can all help each other in one way or another.  In fact, it can make me feel good when someone gets upset on my behalf.  Sometimes I think I've just been tired for so long that my indignant anger just has no fuel anymore.  And fueled anger can bring positive change.  So I really need to appreciate others' ways - I often need them!

[MooseMom]

fearless, your post brings up many good points.  I don't think I am really that different from most people who are trying to cope with a chronic illness, and I don't think I am the only one who has felt a whole range of emotions, mostly fear, anger and resentment.  In my experience, limited as it may be, I have found that it is what you do with those emotions that really counts.  These emotions have, for the most part, made me get up off my butt and do what I have needed to do to wrestle back some modicum of control over my life.  If your emotions leave you paralyzed and inert, then you're not going to live for very long.  But if your anger makes you demand good care, and if your fear makes you cautious and protective of your own safety, then those emotions can serve you well.

I have found, after reading many many posts from many, many IHD members, that too many people feel guilty for being angry or fearful.  It's as if we expect ourselves to be brave little soldiers 24/7, and this just puts an impossible burden on ourselves that we do not need.  Life is already difficult enough without we ourselves adding to our own load to bear.  So while I do attempt to stay calm, cool and collected, for those times when I fail, I don't apologize and I just accept the fact that I'm pissed off.   But I have discovered that as time has gone on, fewer and fewer things upset me, and when I do get upset, it's not with much force and it is not for very long.

You are so right...indignant anger takes up a LOT of energy, and maybe I'm just too tired to get so upset over most things anymore!

[fearless]

very insightful
thank you

[cariad]

Hi fearless, and thanks for taking the time to hear me out. I think I understand where you are coming from, and as I have suffered from two stress related conditions myself in this past year, I can truly appreciate your desire to keep your emotions on an even keel.

I suspect we are actually in total agreement on many if not all issues in this realm. I don't believe I handle anything better than you. As you've said, I may handle it differently at times.

My primary concern when it comes to these issues, issues which can easily be dismissed as trivial, is that patients need to come together to support one another and essentially remind each other that it is OK to take these things seriously. I am all for remaining calm, I encourage it and try to practice it in many instances, but with transplant (and you may already know this from experience, I don't know if you've had one before) the flow of demands and expectations only goes in one direction. They (meaning the medical establishment as a whole) can create all of these requirements and rules for us and flip out over any little deviation (and some of them do) but we are not supposed to expect or demand anything from them. So, in harping on the fact that one could be taken off the list for this, I mean to broadcast to others in renal failure (MM, but also anyone reading and trying to absorb information) that a simple box with a seemingly innocuous tube can turn into a truly serious problem, yet it would be in the selfish interest's of Gift of Hope to minimize the importance of it. I've had a bloody receptionist tell me, when I asked about an iron infusion and said I was not sure I wanted to undergo this procedure "Well, this is what you have to do to get on the list." NO, little receptionist. You do not judge and infantalise the people who know infinitely more than you about this process and their own rights, plus pay your salary. You better believe she got a thorough dressing down from both me and my husband. An iron infusion is not a big deal to me, but the attitude of some of these medical employees, from receptionist to surgeon, will not stand.

So all I was really saying to MM, and to you, is that unfortunately we do need to pick a side, and I believe we on this site are all on that same side. That horrible doctor who said 'extra cheese dialysis', in the scheme of things, some penny ante nephrologist in New Hampshire (Noshi Ishak, in case anyone is googling him) cannot affect my life in the slightest. However, you and MM both took the time to call him out for his thoughtless and ignorant statements, and I think that was the right thing to do and I thank you both for it. I suspect that the next time Noshi Ishak wants to hold himself up as an authority on who is worthy of receiving the best quality of life possible on dialysis, he will think twice.

Thanks for your reply and hope to see you posting more in future. I think we could learn loads from each other.

[boswife]

i tell you, it's like a therapy session (for me) to come here to IHD and read some of you amazing people..  We all have our ups,downs, emotions...etc that take us all over the place and to see others 'handling' it, makes my life so much more 'dealable'..  Im so glad i found my way here for Bo's sake and Mine

[rsudock]

When it comes to jumping through all the hoops to getting on the list and patients like Moosemom jump through those hoops, it can be quite tiresome when something as simple as getting your monthly labs drawn gets messed up b/c they don't send you a box. ESRD patients have to deal with so much nonsense with insurance, disability, UNOS list, meds, etc... it does get quite frustrating when something out of my control, screws up my plans for transplant, waiting list, etc...  I guess maybe I could be classified as a drama queen too b/c everything about ESRD is life or death to me...I can't help it, just who I am...

Glad your box showed up Moosey. Sorry it had you a little stressed...I totally get it. It's frustrating having to worry about people doing their jobs correctly.....c'est la vie I suppose!

Happy Thanksgivng all!

xo,
R

[MooseMom]

Well, you see, now I will know how to deal with it the next time it happens, and I'm 99% sure that a delay WILL occur again at some point.  Now I know exactly who to call and what to say.  The only reason I posted about it at all was because I knew that I'm not the only one getting these boxes.

This gives me the opportunity to share the most important thing I learned from all of this, and that is more about the role of the transplant center vs the role of an outfit like Gift of Hope.  I am assuming (perhaps wrongly?) that this is the way this works in other parts of the US...

It is the transplant center that determines whether or not you are eligible for the list.  The testing and the financial investigations determine your eligibility, ultimately decided upon by the tx center.  It is the Gift of Hope people who determine if you are OFFERED a kidney.  If they do not have a recent sample from you for crossmatching purposes, you will not be offered a kidney until you submit a recent sample.  You will, however, still remain on the list.  So, you'll be on the list but you will not be offered a kidney.  Those are the two sides of this particular equation.  I had not understood this, but now I do.   And now, so do all of you.

[fearless]

Hey MooseMom!  Thanks for that info/explanation.  Wonder why these things are not made clear to us from the beginning?  THANK GOD for IHD