Getting closer to getting listed!!

[smcd23]

My "significant other" is currently listed at a facility in Massachusetts. They don't like that his only insurance is Medicare and a supplement. They have literally told us to move to MA so that he can get on state Medicaid. Heck no! He's been listed through them since 10/2008 but has been on status 7 hold for lack of "adequate" insurance for well over a year now. That's another story for another day. Grrr.

So then last June we went to the only transplant facility in our state. We started the process there. They did the initial workup, said they'd consider listing him and then had him complete a very lengthy and very intense work up. They did testing that the current facility never did, and had him meet with specialists the other hospital never mentioned. He finally had to go up there in March and have a urology test done to make sure his bladder functioned and that he wasn't going to have the same problems with the transplant that he had with his non functioning kidneys.

Well today I got a call from the coordinator who said that his most recent dialysis printout shows he's been much more compliant (he's been having an issue with this) and asked some other questions and said she was going to present him to the team. I don't want to get my hopes up, because it's been almost a year, but I can't help it! Had to share with someone who might understand how exciting this is. We also have to wait until after June 11 to get officially activated if they accept him, because he is having his parathyroid out and would need to have another set of labs done for them. But they said they would transfer his time (3+ years) and just place him on hold until he was recovered from the parathyroid removal and they had recent labs. They have told us before that once they transfer his time, he will literally shoot to the top of their list! I am crossing my fingers that this happens this time and they get him listed. I'd love to see him with a new kidney this year.

The benefit of switching facilities is that in our home state, we only have one transplant facility. Which means if an organ becomes available here, it gets offered to the hospital here first. Then if they can't use it it gets offered to the rest of the region. The wait time at this hospital for someone with type A blood is approx 2 years. Where he is listed now, the wait is approx 4-5 because of his age and because they don't have enough kidneys to go around down there - there are 7 hospitals I think that do transplants, so they all fight (and I like to imagine the coordinators in a Colosseum type setting battling to the death, but I digress) for the ones that do become available, and take the kidneys from the surrounding states that cannot be used at facilities within that state.

So that was a glimmer of hope today in my otherwise crappy day. My car got hit by junk that flew off their truck (unsecured stuff, jerks) and I am going to have to pay out of pocket because they didn't stop and I didn't call the police right when it happened. I had to get to work and I didn't think a rubber trash can could cause so much damage. So when she called to give me the sort of good news, it definitely made my day a little happier!

[cassandra]

congrats, and good luck!

love Cas

[Joe]

Sounds very promising! Good luck!

[MaryJoe]

Great news! (the list, not the car )  Hope you get the answer soon, and that it's more good news!

MJ

[paris]

We have to live with hope and this sounds very hopeful!   It is so hard waiting -- waiting to get on the list, waiting for the kidney.  It sounds like you may not have too long to wait after the listing becomes active again.  Good luck -- we'll be waiting for more good news.   

[smcd23]

I didn't hear from her Friday afternoon. I don't want to stalk her (okay, maybe I do) so I am going to wait until Wednesday before I call to follow up. She said if they accept him they would mail a letter to him and some paperwork to fill out so they could move his time and activate him. So I figure it takes makes about 2 days or so to travel from Lebanon down to us in the Southern part of the state. So I am thinking if they mailed it Friday afternoon or Monday, it wouldn't arrive until Wednesday anyway. Crossing my fingers. We so NEED this, you have no idea.

(This is a little off topic but it's why we NEED this) His dad is having joint/hip problems. He had a replacement hip about 4 years ago and it's never been right. For the past 2-3 weeks he has been in immense pain. Hasn't been able to work. He went to the back doctor because last July he was told he had bulging discs in his back, but the back doctor actually said those looked good on MRI, and he thinks the problem is the fake hip. The hip he has, well 2 prior models have been recalled. So he has to wait another 2 weeks to see the hip doctor. In pain, cannot work. He told Tony that he is going to lose his insurance at the end of the month because he hasn't worked enough hours to continue it (he's union and they have to have so many hours to keep insurance for up to 9 months into the future, and he was out due to injury from Black Friday until just about 2 months ago so he hasn't worked enough yet) and if he can't work, he cannot collect unemployment. He's afraid he will lose his job. He just hit his pension for some extra $, and he was telling Tony he'd want us to move in if this becomes a long term problem. It's a 3 bedroom house and one of those bedrooms (which would be our sons room) is VERY tiny. And there is only 1 bathroom.  We live in a 3 bedroom apartment now. The 3rd bedroom is nothing but dialysis supplies. I can't imagine Tony hauling the boxes and supplies up the stairs every night. Did I mention the 1 bathroom thing? Yeah and the bathroom is on the 1st floor so we'd be back to drain bags instead of the cleaner, more convenient drain lines. Not to mention I have NO idea where we'd store the supplies. Or all of our sons stuff, his room here is 2x bigger than the room he'd get there, and he has half our living room which I think is bigger than the living room in his dads house. Granted the mortgage on the house is like half our rent, but that's because our apartment I think is WAY nicer. And I don't want to be paying someone elses mortgage and getting nothing out of it, or moving in there and then 2 months later have him say okay I'm going back to work, thanks for the help move out when you want, and not be able to find another apartment that we like (that is also dog and cat friendly).

So that is yet ANOTHER reason to cross our fingers and hope. As a group now, let's all cross some body parts hah If Tony got a kidney and went back to work, we could afford to pay the mortgage at his dads house and still stay where we are. Which would be lovely.

So I'm praying. Hard. And asking the universe for positive vibes, and may even do a Pagan ritual dance if I thought it would help at this point.

[CBennett]

  Fingers are crossed, good luck

[Poppylicious]

Boo! for the car, but yay! for the listing (*fingers crossed*).

Are you saying your FiL would want you to move in with him so that he has somebody to pay his mortgage? I understand that we all want to help family out however we can, but this would be a huge benefit for him and nothing but a hassle for you (particularly if you're just going to be worrying about having to move out again once he's able to return to work.) Plus won't you just end up doing most things for three boys instead of the two you currently have to deal with ... 

Hope it all works out for you.

[Traveller1947]

I'm hoping for the best for Tony and you.  I'll be praying for you.

[okarol]

  Best wishes that he's listed soon!

[smcd23]

Yes Poppy, that is what he would want us there for. I told Tony there would be only 2 ways it could happen. 1st way would be the house gets put in Tonys name upon us moving in if it appeared to be a long term thing. The 2nd way is if it was a short term thing, or expected to be, I'd want it in writing that for every month we paid the mortgage Tony would get 5% of a stake in the house should his dad sell it before he dies, or 5% more of a share in it than his siblings in the will. Right now each sibling has a 33% share. But if we lived there for say 6 months, I'd want it in the will that Tony gets a 63% share while his siblings each get 18%. And I'd want it in writing. Of course if his dad said he'd pay us back that would be a different story but I wouldn't expect he'd be able to do that. It's all still up in the air at this point as he's waiting on another consult with the hip doc and a blood test for heavy metal poisoning. But if Tony got listed and got a kidney ASAP so he was able to work, it wouldn't matter because we would have the money to help him out. Believe me, I like being relativly sane and moving there would just destroy all hopes of staying sane lol.

[smcd23]

HE'S OFFICIALLY ACTIVE!!!!! They activated him prior to his June 11 parathyroid surgery and he's good to go with them! They just have to transfer his time over from Boston and he will be at the top of their list!! So happy I nearly peed my pants when I listened to the voicemail. Squeeeeeeeee!

[lainiepop]

yay ! so pleased he got Listed! 

[Willis]

HE'S OFFICIALLY ACTIVE!!!!! They activated him prior to his June 11 parathyroid surgery and he's good to go with them! They just have to transfer his time over from Boston and he will be at the top of their list!! So happy I nearly peed my pants when I listened to the voicemail. Squeeeeeeeee!

Congrats! It took me over a year to get on the list and I'm as healthy and compliant as anyone on PD can be... 

 

[KarenInWA]

Congratulations on getting your SO on the new list!

I am confused about something, though. His father wants you to move in to help him pay his mortgage, and I understand how that isn't going to work out very well for you and your family. However, it sounds like his need is rather urgent, and you're all excited about your SO being listed so hopefully he can have his surgery ASAP. He will need to take time to recover, which can take at least 6 weeks, if not more. Then there's the hassle of finding a job. Does he already have one lined up? Finding a job these days can take a long time, and having a major thing like a kidney transplant doesn't make it any easier, unfortunately. I kept my job throughout my time on D, and haven't had that problem (knock on wood), but this is a reality that needs to be faced. How soon is his father expecting/hoping that you all will move in?

KarenInWA

[smcd23]

I am confused about something, though. His father wants you to move in to help him pay his mortgage, and I understand how that isn't going to work out very well for you and your family. However, it sounds like his need is rather urgent, and you're all excited about your SO being listed so hopefully he can have his surgery ASAP. He will need to take time to recover, which can take at least 6 weeks, if not more. Then there's the hassle of finding a job. Does he already have one lined up? Finding a job these days can take a long time, and having a major thing like a kidney transplant doesn't make it any easier, unfortunately. I kept my job throughout my time on D, and haven't had that problem (knock on wood), but this is a reality that needs to be faced. How soon is his father expecting/hoping that you all will move in?

KarenInWA

Karen - his father is still doing testing with a new orthopedic doctor - bone density tomorrow, something else on Tuesday and then hopefully surgery scheduled by the end of the month. He just put in a request for some money out of his retirement, and he's about to settle a workers comp claim (I have to help him write something this weekend) for an injury he got on the job in November so he will hopefully have enough money to cover needing a hip revision... I hope. They won't know how serious his hip problems are until he has the other testing done, and at that point I guess we will get a time frame for his surgery and recover.

As for my SO, he is in the Union - once he gets a kidney we have to write a letter to the Union apprentice committee asking that he be allowed to rejoin as a 3rd or 4th year - I forget where he left off. We had to ask them to allow him to stop schooling because we couldn't afford the gas in his truck for him to commute to the school and back 3x a week. And he wouldn't get home until 10ish which would cut into his dialysis time, too. Then he has to pay to be reinstated because he couldn't afford his dues while sick. All of the people on the apprentice board are aware of his condition, and know how smart he is in his trade and that shouldn't be a problem at all. Right now that Union is in desperate need of workers, so he'd be able to get a job as soon as he was able, most likely.

We just need to catch a break, somewhere. I am getting so worn out doing everything 24/7, and its becoming a struggle financially. I finally broke down today and called the community caregivers to set us up with a volunteer (hopefully) to come over and do dump runs with the dialysis boxes 2x a week. He has lost so much muscle and weight from the ESRD that he can't even get them down the stairs and into his truck. Not to mention the joint pain from gout and calcium deposits. And the dump is only open 7 to 3 which of course are the hours I am at work. We just NEED a kidney so we can get back to a semi normal life...

[MaryJoe]

So happy to hear your news! Hopefully it won't be long now!

 

MJ

[MomoMcSleepy]

That's great news, I hope it isn't long!  Sounds like he's having a tough time.  Are they taking good care of him Th(his doctors,I mean, I can't use backspace and reword for some reason)

[smcd23]

The new doctors are definitely better than the old ones, that's for sure. They are way more enthusiastic about everything.