My transplant awareness site (of interest to anyone with B. cepacia)

[WinAce]

Check out <a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org">Save-Allan.org</a> for my story (i.e., Medicaid turning down my transplant request, the only thing that could save my life, on the grounds that it would be too risky; there's guberment logic for ya), my day-to-day blog, where I post stuff that CFers--especially those with cepacia--might find interesting, a forum where you can brainstorm ideas or toss out suggestions that worked for you, and so on. I'll add poems and pictures to that later, as I get the time, as well as tons of other content, hopefully.

I'm gonna try to get that new Medicaid policy on denying payment for B. cepacia transplants overruled, using every legal means at my disposal. Anyone who lacks decent health coverage, and has CF is at risk of acquiring this organism, and, if this policy isn't nipped in the bud, being disqualified from life-saving organ transplant. That should give all of us pause!

 

[anonymous]

Wow - that's quite a web site! Hope the money starts pouring in for you. By the way, saw a picture of your girl - she's real pretty.

Best of luck, jan

 

[anonymous]

Have you checked the medicade policy of other states?

CF 55 TX cepacia

 

[Mockingbird]

If you write poetry, you should submit it to a contest. There's one at <a target=new class=ftalternatingbarlinklarge href="http://www.poetry.com">poetry.com</a> and one at umm.... Well, there a couple more, but I forget where. Poetry.com is the best one, anyway. There's a quarterly prize of $1000 and an annual grand prize of $10,000. I know it's a long shot, but it's worth a try. Poetry.com also has daily magnet-poetry and haiku conests with prizes of $100 each. You can try to search for others, but most of them have an entry fee and not as much prize money.

Also, have you gotten the local media involved? Call up a news station and see if they'll do a story on you. That'd bring in a lot of donations.

If government won't give you money through medicare, there's another... ummm, less ethical way of getting it. Apply for a grant. You'll need a good reason, like you want to open up a business, or write a book or something. It's not exactly an easy process, especially if you're lying the whole way through it, but if they actually give you the money, you can spend it on the operation and then... ummm, probably serve jail time, 'cause I think that might involve fraud or something like that... but you might want to check into it and see what the penalty is; if the crime is worth the punishment. (Maybe you could get the money, go to another country, and get the operation. Does Canada do it?) Oh, and if there's any federal agents or whatever reading... ummm, my grant application is totally sincere. Running an Emu farm has always been my dream! Ha ha, kidding. I haven't applied... yet. Anyway, my first two ideas were solid. Myself, I'd consider the third one, too. They might even let you off because your cause is noble.

 

[thefrogprincess]

Wow, I know everyone is thinking about you and hoping for the best. There are many hospitals (any one in the Children's miracle network) that will treat patients regaurdless of their ability to pay. Since you are 20 you may have a hard time with a children's hospital but there are others out there. Good luck.

 

[WinAce]

B. cepacia effectively disqualifies you from transplant at virtually any hospital. I've only heard of a few exceptions being made in extraordinary circumstances, and those others have had virtually no success with these types of high-risk transplants. Nope, it's basically UNC or bust. That's also why I'm stuck working with NC Medicaid (and since I permanently moved here, it would be ridiculous to move away now unless I had a <i>really</i> compelling reason).

 

[anonymous]

So if your in NC not NY, would NY medicare pay for the TX out of state in NC? Some states do not have TX centers and will pay out of state centers. I am not sure Columbia even does any TX's any more, so NY may pay for out of state. Duke and UNC both will look at cepacia's. My TX was at Duke with cepacia. I assume your at UNC in CH?

What is a more compelling reason to move other than to get the funds for a TX and the chance to live? Sounds compelling to me. Have you contacted the National Foundation for Transplants to get ideas on fund raising?

CF 55 TX cepacia (5 year out)

 

[WinAce]

UNC doesn't accept NY Medicaid, which is one of the reasons I moved permanently in the first place. (Chapel Hill is a great spot, though, so as far as moving anywhere is concerned, I came out ahead.) NY Medicaid <i>would</i> have paid for an out-of-state transplant, but with no center except UNC actually performing them, my hands were tied, so to speak.

Duke changed their policy a couple of years ago, in a %@^cked-up case involving <a target=new class=ftalternatingbarlinklarge href="http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID=34457">a young woman actually moving there at the doctors' request</a>, and then being told "whoops, sorry, we won't transplant you after all":

<blockquote>Quote<br><hr>Although patients with genovariant 3 generally do survive surgery and are later discharged from the hospital, they are frequently readmitted and die as a result of infection related to the B. cepacia. Because of these concerns, Duke has stopped doing transplants for patients with genovariant 3 B. cepacia.
--Richard Puff, associate director of Duke's news office<hr></blockquote>

Duke sucks. They gave me the runaround for several months, implying that they <i>would</i> consider me despite B. cepacia, and then called and said "whoops, sorry," too. UNC, as far as I know, remains the only center in the US that strongly does <i>not</i> consider Burkholderia cenocepacia (the aforementioned third strain) as an <i>absolute</i> contraindication. A few other centers, like the University of Alabama or Pittsburgh, might take them on a case-by-case basis, but unlike UNC, they have rather pitiful survival rates (Alabama, for instance, as far as I know, has done 3 transplants of that nature, with all three patients dying). So it's really practically certain death anywhere else, even if you <i>do</i> get a transplant.

I've been in contact with the Children's Organ Transplant Association, among others, and see my site above for all that jazz. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I don't have cepacia but wondered if you still have to deal with it post tx or not.
I was not sure if it's confined to the lungs or if it effects the other parts of your body too, thus still being an issue to deal with post tx?

 

[WinAce]

It depends. UNC gives you 5 antibiotics at once for several months after transplant in an attempt to eradicate it. Should that succeed, I believe, you don't have to deal with it afterwards. If it spreads to the new lungs, it can cause a ton of problems, yes. Still, overall, the risk isn't necessarily that bad, when you consider the survival rates of other conditions like pulmonary hypertension which are treated with transplants. <img src="i/expressions/face-icon-small-smile.gif" border="0">

If it spreads to the bloodstream, it causes "cepacia syndrome" (a toxic sepsis reaction) and you're basically dead, as it's largely untreatable. Luckily, I've avoided that--for now--and it seems to affect only a minority of those colonized with the dreaded germie.

 

[anonymous]

Duke has had issues with type 3 cepacias as has UNC. Duke does take cepacias, other than type 3. As I recall, the case that Duke had move to the area, than declined (which you cite), died post TX at UNC. The attempt to put lungs in cepacias that a center has no success with (type 3) results in the death of the TX and one CF waiting for lungs that runs out of time. Duke made the right tough decision. UNC had one cepacia move to the area (a CF friend this year) and did the same thing for another reason (prior transfusions antibodies) and they took a while (three months), after she moved to CH ("Whoops"). They dropped her and did little at the CF center for follow up care. I would not concur that this means that UNC sucks. She is still paying on the lease of the rental appartment in CH. The criteria are tight at all centers and sometimes the review of the medical records takes time. Duke has helped many CF's, and cepacias and I stongly feel that your experience is not the norm. When Duke gave you the "several months" runaround, did you or the TX coordinator know you had type 3 cepacia? Duke rejection of type three has been firm for the last two years, since the case you cited.


Both UNC and Duke are some of the best centers for CF TX's, dispite your experience.

Post TX with cepacia and the potential issue is certainly an adventure. Obviously, I feel that I am alive and every breath, every day, is because of Duke and an unknow donor.

Sad that UNC would not accept NY medicaid.

One other center has vast TX experience with cepacia, Toronto Canada. Can you say eh? They were not taking Americans five years ago. They may be worth a call.

The NTF has vast information on fund raising. 800 489-3863

CF 55 TX cepacia

 

[WinAce]

Yeah, I had read about that case at Duke with the gal turned down for genomovar III specifically, which is why I made extra sure everyone I talked to KNEW I HAD THAT. I was quite surprised when the receptionist, a transplant coordinator and then a doctor implied they wouldn't exclude me on that basis. After three months or so of stalling, though, I basically knew what was up, so the "sorry" call wasn't all that surprising. I just wish they'd taken less time to tell me something that should have been that obvious, just based on their prior policy, as opposed to making me think I had a chance there!

I stumbled onto your friend's blog a few weeks ago, and read up on her extensively. It left a bad taste in my mouth, too, albeit less than Duke's blanket refusal for people with Burkholderia III.

I've looked at Toronto, but that was before I committed to UNC as the easier and potentially better course of action. Back when I was in NY, considering a move, it was an option, too; now that I moved, got firmly planted here, obtained the local Medicaid, signed a 12-month lease, and so forth, it would be very awkward to abandon all that progress and relocate again, with no guarantees the locals would pay for this operation, either. Jessica <i>does</i> have Canadian citizenship, though, so it's not totally out of the question if there's no way to do it here...

 

[anonymous]

Best of luck.

CF 55 TX cepacia

 

[anonymous]

Best of luck.

CF 55 TX cepacia

 

[cfmomma]

Wow, you guys have really done your homework. I had no idea getting a transplant was so difficult (beyond the obvious shortage of good organ donors) and required crossing so much red tape. Friends and family are always telling me "Oh, Harrison (my son) can always get a transplant if things get really bad", if it were only that simple. He does not have B. cepacia or psuedomonas as of yet.

Winace, how is your girlfriend dealing with all of this? She sounds awesome and very supportive.

 

[SeasonsOfLove]

Hi, Yesterday's NY Times Magazine had an article about transplants. FYI and everyone have a good day,

 

[WinAce]

<blockquote>Quote<br><hr><i>Originally posted by: <b>cfmomma</b></i><br>Friends and family are always telling me "Oh, Harrison (my son) can always get a transplant if things get really bad", if it were only that simple.<hr></blockquote>

Holy crap! What an ignorant and sociopathically uncaring thing to say. It's not like you can walk into a store and say "Oh, I'll have a lung, is that dollar sale still on?" And even if you did, have they for <i>once</i> given consideration to just how horrible the procedure is, not to mention the life-draining anti-rejection drugs and huge doses of steroids, or the very serious risk of death both during the operation and after? Heck, I bet none of them even know what a chest tube is.

Sorry, that just pissed me off. If a "friend" said something like that about my child, I would be very tempted to just bitchslap them, and it would be likely to negatively affect our relationship for years to come.

<blockquote>Quote<br><hr>Winace, how is your girlfriend dealing with all of this? She sounds awesome and very supportive.<hr></blockquote>

She's the best. Truth be told, I wouldn't be pursuing this at all if I hadn't met her. She's been remarkably mature and caring and supporting through it all. Amusingly, we haven't had a single fight to date, despite her insistence that poodles "aren't real dogs" and that the ocean should be out West, not out East (she hails from Oregon). <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[SeasonsOfLove]

One of the aspects of transplant that the NY Times Magazine article from yesterday (that I mentioned in a previous post) focused on is the shortage of donor organs.

 

[anonymous]

You can't "always get a TX". Some centers might reject you, you may not have the funds, a few years ago around 50% of CF's at UNC died on the waiting list. You can die on the table or within a few days (the girl next to my room). You can have issues and spend two and one half months in the hospital and leave on oxygen (my case). Your new lungs can fail from rejection and try and get another set (a woman at UNC) and survive that second TX (very lucky girl). Some have a poor outcome and never have an easy time and die within the year (known several very well). You can get out and have a fool cough on you and give you the simple flu and die quickly. This is not going to the hopital for a tune up. Post TX you now have two fatal diseases, one is CF the other is a TX and the eventual failure of the lung (BO) or the drugs distroying the liver and getting on another TX list. Many end up with diabetes post TX, another fatal disease. Than again the issues with the donor infections and issues, some fatal (west nile, etc). Don't forget your meds for the rest of your life, or it will likely be very short. "Always get a TX"?

One of the most interesting drives is when your told to "come on down" and you decide if your "feeling lucky". Your decisions are dead serious.

Standard poodles are real dogs yet substandard to sheps.

CF 55 TX cepacia

 

[cfmomma]

I worked as an art teacher at a local preschool, the pay sucked but I could bring my son for free. I went to pick him up from his classroom at the end of the day and she started talking about CF and her "superior knowledge" of it. She blurted out, in front of my son who was four at the time, that the oldest living person with CF was 35......and she knew him...and then she started describe the transplant procedure because she wanted to mentally prepare him for the future. I was too horrified to respond and immediatley took my son home and never returned to that school again. To this day I wished I had kicked her butt and spray-painted "ignorant F***" on the hood of her car.

CF 55 TX cepacia: how was the drive to the hospital after "the call"? Were you terrified or excited? I can only imagine the whirlwind of emotions surrounding your transplant.


The ocean shouldn't be to the east or west, it's has to be to the south!! here in Texas.