Ask the person whose spouse just got on the transplant list..

Miscellaneous and Personal Stuff I Must Share
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Brief background: Mr. Kitty was diagnosed with Cystic Fibrosis a few years ago, about four months shy of turning 48. Yes, really. :slight_smile: Since then he’s had a major hospitalization (38 days in the hospital, with nearly 9 of those on a vent) and several minor ones. He’s been on disability for almost two years, tried to go back to school through voc rehab but it didn’t go so well (when your O2 saturation level is in the low 50s and your CO2 level is nearing 90, the brain doesn’t quite work the way it used to), and was told about a year and a half ago that time was pretty much running out.

He went through the evaluation process in March to go on the transplant list (double lung); the nutritionist said he was the 'healthiest dead man she’d ever met" ( :smiley: ), the neuropsych doctor called him a fatalistic optimist, and everyone agreed that physically he was a prime candidate.

In April he was rejected due to ‘compliance concerns.’ Specifically, they were ‘concerned he had not fully submitted himself to their medical expertise and care.’ :rolleyes: I pointed out that he’d kept himself alive for nearly 48 years with a disease that kills most people in the first few years of life by doing just that, and they couldn’t expect a radical shift in his thinking just because they wanted him to ask questions after doing what they wanted instead of before.** They believe that people with ‘his kind of attitude’ fall into two categories- their best outcomes, or their worst- and they weren’t sure if they wanted to take a chance on him. They did admit he’d consistently done everything they asked him to do- but felt there was “too much negotiation” involved. They weren’t sure if they would reconsider him or not.

Thankfully his primary pulmonary doctor (not affiliated with the transplant hospital) stepped in and sent an impassioned note to the committee. They reconsidered, and the final doctor gave approval yesterday. We should hear today from the transplant coordinator to set up an appointment with their surgeon, and at that point they’ll tell us where on the list he is.

So… anyone have any questions? Or if anyone’s gone through something similar, please feel free to chime in! Lungs are still dicey as far as transplantation- current statistics show an average 5 year survival rate- but he’s been an outlier this long, no reason to think it won’t continue!

[sub]** That really was essentially the issue; they wanted to say ‘Jump!’ and have him immediately jump, rather than his tendency to say ‘How high would you like me to jump? Straight up, or out? Can I have a running start?’[/sub]

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I’ve got no advice, but I do want to say Way to go Mr. Kitty! and good luck to him.
And to you, too!

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Good luck! As the parent of a kid with CF (who is now 21), I’ll be keeping an eye on your postings. :wink:

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Mr Kitty loves talking to other CF patients when he’s in the hospital, especially kids (parents of little ones seem to take a lot of comfort from his visits). He’s always telling them “When it comes to it, make sure it’s the disease that gets you, not the diagnosis.” Considering the survival rate of kids with CF from his “era,” I really think that’s what kept him around for so long. Because he never knew any different, he never knew what he couldn’t/shouldn’t do. He worked in HVAC (in Georgia!) for most of his teen/young adult years, then temporary disability after a head-on collision sent him to college for the first time in his late 20s. He holds the same degrees I do- bachelors, masters, and Ed.S., licensed as a professional counselor- and got the last two with his O2 sats in the 70s. Knowing how cruddy I feel when my sats dip to 90-ish, I can’t even imagine the effort he had to put in.

We really should frame the copy of an X-Ray report he has from when he was about ten, where the doctor said (paraphrasing) “presence of pellet-shaped mucous plugs would be indicative of diagnosis of CF if patient were younger.” Augh!!

If MiniMercotan ( :wink: ) would ever like to chat with Mr K about treatments/whatever, I’d be happy to put you in touch!

Foxy, thanks! I should’ve added “well wishes also appreciated!”

Amusingly, our insurance company has just decided he’s met his annual limit for portable oxygen tanks, and won’t pay for any more until next year. Thank goodness for a decent intermediary agent, who’s looking into how to fix the problem now. Otherwise it’d be “well, you can’t leave the house AT ALL for the next 6 months, and we have to really hope the power doesn’t go out/nothing happens to your oxygen generator.”

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I’m under the impression that a double lung transplant is really a double lung plus heart transplant - they don’t bother disconnecting and reconnecting hearts when everything around them is getting changed. You might ask about that and ramifications.

Good luck. I have an aunt who is facing kidney failure - down to 15%, and needing a blood vessel check where the dye will probably finish off what function is left. She just had a pulmonary fistula put in (move a vein in arm and linked to artery, causing a short loop) to be ready for dialysis, which they expect to need after the blood vessel check. She’s working to get on the transplant list.

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Mr K’s heart is actually in decent shape- one of the things they checked out during the eval process), so they’ve decided to not do the heart-lung. The significant advantage of this is it increasing the ‘pool’ of possible donors- someone who dies of a heart attack may have no other organ damage, so by not needing the heart Mr K could get that person’s lung.

An ideal situation (short of not needing replacement parts to begin with!) would be just needing one lung, but CFers can’t have a single-lung transplant due to the reinfection issues.

Best of luck to your aunt!

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I don’t have any questions or smart things to say, but you have my heartfelt best wishes.

One of my proudest, though saddest, moments was getting letters from people who could see and walk due to my donating my husband’s tissues after death. I urge everyone to consider becoming an organ and tissue donor, and to say yes if the choice ever comes up. It doesn’t take away the pain of losing a loved one, but it’s a little moment of joy in all the sadness, knowing someone lives, or breathes, or walks, or sees, because of you.

Done proselytizing. Please take care.

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My best friend growing up had CF, she made it to age 17 after being given a life expectancy of age 3. I remember watching her choke down her enzymes and have her nebulizer treatmetns BEFORE we could play. Today would have been her 41st birthday. Hats off to Mr Kitty. From me and TW.

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Both Mr K and I were strong supporters of the program before we ever thought we’d be part of it (I’m also on the bone marrow registry), and a lot of folks have told us that they’ve converted to being pro-donation because of what we’re going through, which genuinely gladdens my heart.

I must admit, though, that I’ve been struggling a little with being on the other side of it. Although I intellectually know that the donor would have died anyway, and that there’s nothing that I could do to alleviate their loved ones’ suffering… I can’t help coming back to the thought “I’m hoping someone dies so that I can benefit from it. We’re going to be waiting for a phone call that will be one of the happiest of our lives while at the same time a family has just made the hardest decision of theirs.” And I feel a little… icky as a result. I’ve ‘joked’ here and elsewhere that I hope the donor is some total asshole that has no friends or family and dies doing something worthy of a Darwin award, because the thought of it being a situation where a widowed mother of 3 kids is on her way to her second job and gets hit head-on by a drunk driver would be too much.
Mona Lisa Simpson, thank you so much for your post. When I see how people react to Mr K in public when he starts coughing, my heart breaks for the kids who no doubt have to endure those looks, or the stigma of parents not wanting their kids to play with them. What a great friend you were, not only for being there for her, but also to remember her so fondly on her birthday all these years later.

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BobKitty, I was 8 when I met TW. I had just moved to town, and there was a stigma around her. I didn’t know any better. One of the first things she told me was “I take over 100 pills a day”. I thought she was exagerating, but no. She also had a lot of allergies to beef, tomatoes, chocolate, dairy, and bandaids. This was the 1970’s it was pretty exotic.

My parents were always good about letting my brother bring friends along on trips, and so forth. Our family were the first people to bring her sledding, have sleep overs, and other short trips. I remember she came camping with us a few times, and she must have had her nebulizer with her, but I don’t remember that part. (And the chest physio, which I really didnt understand until nursing school.) My mom wouldn’t hear about lists of what TW couldn’t eat, just said “Okay, what CAN she eat?” and worked around that.

My memories of her aren’t really hung up on the CF though. Mostly I remember being 8 and 9 and 10 in the 70s and playing Barbies, and reading Nancy Drew, and making up dances lip synching to Abbba.

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How in the heck does someone live undiagnosed for that long with CF? Holey moley!
I have a friend who has identical twins with CF. They each have a different strain of it. The chances of having Identical twins survive with CF is less than 1%. The chances of them each having a different strain of the disease is less than 1% of 1%. Its a bitch of a disease.
Good Luck to your husband and you!

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Congrats to Mr Bob for getting on the list! The way protocol has changed over the past few years, it’s more of a “need-based” priority system for ‘waiting in line’, unlike the old days, when it used to be just a matter of how much seniority you had on the list. I’m hoping Mr Bob doesn’t NEED new lungs for a long time, but that he gets them when they are needed.

I do have some experience in this field, being a CF patient nearly 16 years post transplant. I had been diagnosed at birth, as I had an older brother with CF (lost him at the age of 52 just a few years ago). I was transplanted on December 7th, 1994 at UNC-Chapel Hill (great place by the way, I still live nearby, and my wife works at the hospital now). I did not have your standard run-of-the-mill transplant, as I had only been listed for a few months at the time I was put on the ventilator and told I had a few days to live. My two healthy older brothers were my donors, and I received a lung “lobe” from each of them in an operation involving three patients, three doctors, three teams of staff and two coolers.

We are all doing wonderfully. My brothers recovered just fine, with no problems whatsoever, and after my first few months of rehabilitation (did I mention that as a 27-year-old man, I weighed a grand total of 78 pounds when transplanted?) I have assumed what is one heck of an amazingly normal life.

My wife and I are raising two kids, a 7 year old boy and a 13 year old girl, and I am loving life to the fullest. I will NEVER forget what it felt like “before”, and enjoy every breath down to the bottom of my toes. I wish the same success for your husband… there’s nothing like actually ENJOYING a good lawn-mowing or run up a few flights of steps!

Every person that is transplanted takes a different trajectory afterwords and you never know what’s going to happen, but as I told all three of the doctors at my 15th anniversary celebration (I rented a private room at one of the fanciest hotels in Chapel Hill for it), “If you’d done nothing else in your whole career, guys, you would have still given a man 15 years of life, two children, and the answer to 27 years of dreams, and that’s something that not many people can do”.

I wish you guys the very best, and by all means, if you have any questions for me, I’ve got lots of good stories to tell, and I love talking about the whole thing.

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The moment is hard but, for many people, the decision is not. I’m from an area with a good transplant culture and often it’s the families themselves who ask about transplants. I know people who were upset when they were diagnosed with a big illness because it meant their spares were less likely to be usable!

May Mr Kitty and Sigmundex be able to post in 15 years time!

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So Bobkitty, does Mr Kitty have a lot of the digestive issues as well as the respiratory? Does he have the diabetes that is particular to CF? How does that affect his transplant chances?

And Sigmundex, congrats to you too. I am so pleased and amazed to see the current survival rates for cystic fibrosis. This thread has pulled up a lot of memories of my old friend TW. I even pulled out my Abba records the other night to listen to them for old times sake.

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Mona Lisa -

I can’t answer for the OP, but I had a pretty miserable strain of CF. I had everything, and lots of it, all the way through. Constant hospital stays starting when puberty hit, and going all the way through. At least twice a year I was hospitalized for stays of around 2 weeks at a time, receiving IV antibiotics and other attempts at treatment. I also had asthma, aspergillosis (basically an allergy to aspergillis, an organism that thrives everywhere, pretty much), strong digestive and respiratory issues, and yeah, I’ve been an insulin-shooting diabetic since my junior year of high school, 1983!

I’m glad to have that stuff pretty much all sorted out. Of course I’m still diabetic, but even that is so much easier to control now that I’m not constantly fighting infection.

I hope bob shows up to give us another report soon!

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Wow, sorry I let this lapse for so long… things have been a roller coaster here at the Kitty House!

First off, thanks again to everyone who shared their stories/sent along their best wishes, especially Sigmundex- what an amazingly hope-filled life you lead!

Mr Kitty is in the hospital after a fairly serious downturn… he’d been having a bad couple of days, and I came home one night after work and was unable to keep him awake for more than a few minutes at a time. The next morning we were on our way to Birmingham to his home away from home. He stayed on the regular floor for all of a day and a half before they moved him to the MICU (which I thought was somewhat redundant until I realized there’s a CICU, and an SICU, and an NICU… etc) while they debated the benefits and risks of putting him back on the vent (CO2 of 118, O2 of 64). I spent my birthday taking dictation from him as to last-minute additions to his list of ‘things I want given to specific people when I die’ and changing a few things on his living will (NOT something I recommend as a birthday exercise- I’m MUCH better with the theoretical than the literal).

In the end they put him on The Super-Duper-Extra-Powerful bipap setting and kept their fingers crossed, which… sort of worked, actually. He’s now back on the regular CF/pulmonary floor, much more stable and with a CO2 of around 105. They’re treating him for MRSA, which showed up in his sputum, along with the normal litany of things he gets treated for when he goes in. His kidneys are working a bit harder than they’d like (unsurprising), but we’ve still managed to avoid major damage. The docs are not even implying a discharge any time in the near future (indeed, they’re stopping just short of saying he’ll be there til they find a donor); Mr K has said he’s ‘leaving with parts or as parts’ so he’s settled in for the long haul. If nothing else good came out of this, it’s certainly significantly improved his standing on the list.

In case you’re wondering, I’m mostly keeping it together. The visiting hours for the MICU were… strange (I totally understand why, but geez- I simply can’t justify driving nearly 2 hours to sit with him for 30 minutes, then kill 2.5 hours at the hospital for another 30 minutes, etc), so I wasn’t able to visit as much as I’d have liked. It was equally difficult on him and his nurses, who- well, let’s just say that as well-meaning and professional as they were, are NOT used to a conscious ICU patient. It made for some difficult moments. I’m glad he’s back on the regular floor, with people who are more used to him. I catch myself in moments of spaciness (like almost walking out the door to visit him this past Saturday wearing my Achmed the Dead Terrorist t-shirt- YIKES!!), but I’m keeping busy, doing what I can to keep up with his care, and trying to remember to take time for myself now and then (I’m ashamed to admit I’ve gone through the ENTIRE Questionable Content archive). I haven’t snapped at anyone yet, though I came damned close with my FIL, who left a message on my voicemail simply saying ‘Call me as soon as you get this, it’s an EMERGENCY- I… I just need you to call me right away, it’s very important, an emergency.’ It really, really wasn’t. Not even close. When I have my inevitable heart attack, I’m sending him the bill.

If I’m permitted a moment of selfishness, I’ll admit that I’m really bummed out I didn’t get to have my birthday cake (which is sitting in the freezer), that I had specially made with a spectacular Monty Python joke. :: pout :: Hopefully it won’t be too freezer-burned when I get to take it out.

On a much brighter note, because I know he doesn’t read these boards (and thus can’t get all ‘aw shucks, t’weren’t nothing’ about it), I want to take a moment to say how amazingly fantastic my neighbor is (actually, the whole family is utterly unbelievable- we’re extremely lucky to have them). Not only did he come over to help me with a minor rattlesnake-in-the-dog-pen issue, not only did he have me write out directions so he can visit Mr K, but after making gentle inquiries of our financial situation he handed me a not-insignificant amount of cash to buy food with (which I turned down three times before he threatened to give it to the church instead- LOL). LOVE HIM!! :slight_smile: There’s no way to express how appreciative I am of him and his family.

He started showing the digestive issues a couple years ago, made worse, no doubt, by the painkillers he has to take. I realized, as I was answering the nurse’s intake questions when we were checking him into the hospital, that I know WAY more about my spouse’s bathroom habits than I really should. :smiley: Thankfully we’ve dodged the diabetes (the ‘normal’ version of which doesn’t run, but literally gallops through his family), but they are very, very aware of the chances and keep a close eye on him.
:: whew :: Long update. Apologies again for letting this sit for so long, but… well, craziness. :slight_smile:

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Thinking of you both…

Just hang in there!

My daughter’s actually been doing pretty good for nearly a year, so we’re enjoying the moment. But we know very well what hospitals are like for CF patients.

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God forbid they should have a patient who wants to be well-informed wants to make sure he knows exactly what they want of him! :rolleyes:.

Congrats on the doc getting them to reconsider!

Do you have any idea how long the average wait-time is these days?

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And having read through the whole thread - didn’t realize this was older and it was an update due to a downturn :(.

Hang in there and try to get some rest. Sounds like Mr. Kitty is in good hands and hopefully he’ll be outta there before too long.