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Lung transplant


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#1 susieq40

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Posted 07 October 2010 - 01:25 PM

:emoticon-bang-head:
:temper-tantrum:

Well it's been a while since I posted last. Been busy waiting..and resting and being depressed.

Found out August 2nd that we would probably be looking into a lung transplant. August 24th did second breathing test, confirmed 54% lung capacity, so definitely looking into lung transplant. Lung doctor says she's done everything and sent everything to Seattle. Now I should be hearing from Seattle. Well it's been 8 weeks...grrr.

If I'm going to be waiting I'd rather be waiting on the list, not waiting to get on the list. So every week I've been calling the lung doctor's office. This week I was like, "Is there a phone number I can call?" I mean oh, we need to plan the trip to Seattle in the first place. Husband at the point of whether or not we should look into a different hospital if they are gonna take this long just to get on a list...sooooooo fustrated!!!

Sometimes I think doctors think all we got is time...time to think about our disease over a million times a day!!!

Sorry seems like I just come here to vent. I really do think about you all! Some days I just try to think I'm not that sick and put things on the back burner (denial). Try to focus on my boys. Any advice?

#2 Shelley Ensz

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Posted 07 October 2010 - 02:30 PM

Hi Susie,

I'm sorry for all you're going through, with the frustration and all. I know how hard this can be on the nerves, so I'm sending some flowers to you.
:flowers:
As it happens, the way that lung transplant listings are made have changed drastically in the last few years. They used to be done on the seniority basis, so the sooner the listing, the better.

Now they do it based on a scorecard, which takes into consideration all sorts of factors, such as type of disease, PFTs, 6-minute walk test, oxygen usage, and so on. My husband was initially listed on the "old" system, over 7 years ago now. Just because you are referred to a transplant center for evaluation doesn't mean that you will pass the testing (which is very extensive) or be eligible either now or later for a transplant. My general impression is that they weed out an awful lot of candidates for a multitude of reasons, because it still remains the most difficult and least successful of transplant procedures. (They are much better at hearts, livers and kidneys.)

Anyway, my husband chose to go "inactive" on the old list, which meant that he was still on it, but that he wouldn't be called for a transplant even if one was available for him. Then the listing method was changed to what I call the "scorecard". He remained inactive for over six years on the list. Then, when he decided to go "active" again, it had been so long that he had to have all the testing all over again, to requalify. He requalified last June, and had his single lung transplant in January of this year.

At the point when he had his transplant, he was on 6 liters of oxygen at rest, and 8-15 with activity. He was hospitalized for pneumonia twice in the year before transplant. Even with oxygen, he made it about 3 minutes on his six minute walk test, when they stopped it due to his sats being too low. His lung function was under 20%. Now, with all that, his doctor still said that his score wasn't very high and there was no telling if/when he would be called.

I truly understand how you feel about the sense of urgency. We lived with that feeling for over six years, always hoping he'd get a transplant in time. Our situation was very strange, since nowadays you hear a lot about being called for a transplant just a few DAYS after they are listed! I can't hardly comprehend that as we also needed the time to prepare ourselves emotionally for the whole adventure.

They are probably dragging their feet because they know you wouldn't be eligible for listing instantly, anyway. Even if you were listed, your score wouldn't be high enough, yet, and if your score isn't high enough, you don't get a transplant, no matter what. That said, there are many lung transplant centers. Be sure to go to a center that does a lot of lung transplants and that has a great success rate, because you may have an extremely long wait at a center that only does a few of them a year.

Meanwhile, as totally unhelpful as it sounds, try to relax and enjoy your time pre-transplant, because there are no guarantees of success. We tried to adjust our focus to see how much fun we could have every day; without that, we would have gone stark raving crazy with the incredibly tedious wait....wait....wait!

Good luck and let us know how things progress. Even if they are slower than molasses in January!
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 susieq40

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Posted 08 October 2010 - 10:32 AM

Shelly,


Thanks for the advise. I didn't realize how bad it can really be before they get to you...I guess I probably ain't that bad yet..Thank goodness. We are trying to enjoy every moment we can, and plan special stuff and make good memories. Never know what tomorrow will bring. Trying to stay positive is hard....but trying none the less. Guess we will just make the best of things. HUGS to you. So glad your husband is doing well!! :thank-you:

#4 Jeannie McClelland

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Posted 08 October 2010 - 10:50 AM

Hi Susie,

:emoticon-hug: Here's a hug from me and I've deposited a bunch more in your 'account', so have one whenever you want. I hope the hospital contacts you soon so you at least can get acquainted with the transplant team and administrative procedures there. The hurry up and wait business is so frustrating...

Keep stocking up the good memories - they come in handy for scrapbooks and family stories. And keep thinking positively too, no matter how hard it seems at times. A smile releases endorphins which make you feel good and nobody is going to raise their eyebrows! (My, doesn't she smile a lot? Do you think she's OK? Maybe we need to get her into a 12-step program or do an intervention! :lol:)
Jeannie McClelland
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#5 Annie20

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Posted 08 October 2010 - 10:58 AM

Hi Susie,

Here is a bouquet of flowers :flowers: and a very warm hug :emoticon-hug: Please know I will be thinking of you. Take care

Annie
Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

#6 enjoytheride

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Posted 08 October 2010 - 04:25 PM

(((hugs))) from me too.

#7 susieq40

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Posted 12 October 2010 - 09:51 AM

Thanks for the hugs everyone! I really appreciate it and the support! Support is so important! Still no word...but taking it in stride. Had a nice lunch withmy sister today :) We are scrapbooking pictures from the last few years..should take us a while. So we are also getting together every sunday. HUGS go All!!!
:emoticon-hug:

#8 debonair susie

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Posted 12 October 2010 - 10:55 AM

Hi susieq,

I am SO GLAD Shelley posted all of the great information for you to peruse. I had no IDEA all that is involved, until I read her post...WOW! :blink:
Hopefully, her information will be helpful (enough) for you and hubby, that you might be able to "relax" a bit more and enjoy your family time. Otherwise, it will expend any energy you MIGHT have...very QUICKLY. (Plus, with your little guys, you don't need help in THAT department, Sweetie).

I am SO glad the scrapbooking is going on...another way to enjoy time together. I also love that you and she are able to go to lunch every so often.

In the meantime, I'll continue to hold you in my thoughts (as you know I have been).

{{{Very Special Hugs for you}}}
Special Hugs,

Susie Kraft
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#9 Kathy D

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Posted 16 October 2010 - 10:21 AM

Susie Q,

Here is an option for you, look into National Jewish Hospital in Denver Colorado. Dr. Aryeh Fischer is a Scleroderma Specialist there and the hospital is known as a leader in respiratory treatment. Also, about 5 miles from this hospital is the transplant hospital.......

1-877-CALL NJH (877-225-5654)
Diffuse Scleroderma Diagnosed March 2009

#10 Shelley Ensz

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Posted 20 October 2010 - 06:17 AM

Hi SusieQ,

Are you still waiting to hear something from Seattle? If so, you might want to call them and make sure your paperwork hasn't been lost in the shuffle.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 susieq40

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Posted 27 October 2010 - 11:19 AM

:emoticon-bang-head:

Still waiting to hear from Seattle. Found a phone # online. Called it, and left a message. Will try the # again tomorrow. Haven't even heard from my own lung doctor here. Shes 2 hrs away, and I've left dozens of messages, and she says the same thing, they have the paperwork, they are coordinating withother doctors for a visit for me. To meet all the doctors I'll have while I'm there etc.. A lung doctor for follow-up. A RA doctor for the disease. I'm getting tired of excuses. She won't even really work withmy RA doctor on what med's to try or stay on. The doctor's RA and Lung doctor haven't communicated well from the beginning. I'd get all different doctors but they would all be 2 hrs away. And It wouldn't be too hard to travel if I could do it by myself. I am now on so many meds that make me tired, and unable to drive long distances. So hubby would have to take the day off every time I have an appointment. I think the lung doctor thought that Seattle would have gotten back to me by now, or she would have made a follow-up appointment(trying to contact her for that too). Anyway found out shes out of the office this week...Well just learning patience....About ready to take my business else where, not that it would be any faster....

#12 Shelley Ensz

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Posted 27 October 2010 - 02:58 PM

Hi SusieQ,

I'm sorry it is taking so long for you to get any answers regarding an appointment for a lung transplant evaluation.

Do you have anyone other than your husband who could also make trips there with you?

The reason I ask is because the evaluation often takes a long time. My husband had one full week of testing, so extensive that even though we live in town just 45 minutes from the center, we booked a hotel room next to the hospital for that week. He also had many other tests for a few months after that.

In fact, he even had to have a Nissen fundoplication surgery to eliminate his heartburn, just in order to qualify to be listed, so that was a bunch more appointments plus a hospitalization. Then after they were satisfied that the operation was a success and that he no longer had heartburn, they proceeded with his listing. During the Nissen surgery, they thoughtfully made his esophagus longer by using tissue from his stomach. This helped them lower his stomach, so that he would have room to accept a new left lung (as his stomach was in the way of stuff, apparently.) The underlying reason for the Nissen is because there are very poor outcomes (read, death) among lung transplant patients who have heartburn.

He didn't have his lung transplant for over another six years, but, lucky stars, he ended up with a new left lung!

Anyway, one of the things the transplant team will evaluate is the level of personal support that you have. They'll be concerned about things like, will your husband lose his job if he has to take off weeks or months to take care of you? If he did, would you lose your insurance or ability to make co-pays? So then they'll want to know if you have anyone else who can help out, with driving you to appointments, being there for you after transplant, and so forth.

Once my husband had his transplant, he had to have someone with him day and night (24 hours a day, no exceptions) for six full weeks. This is a very standard requirement. Luckily, he had me and we also had a crew of very helpful neighbors in our condo, so I was able to run errands while they took care of him, and in between his medication schedule which was every few hours in the beginning. And my son came to town to take care of him for a week, in the middle of that, so that I could recuperate myself, which we had carefully planned ahead of time.

Prior to his transplant, I confessed to my doctor that I was very concerned that I wouldn't be able to handle it all myself. And she said that I should not even try to handle it by myself -- that I should say Yes every time anyone offered to do anything to help! So we not only said Yes, we also asked various friends and neighbors and acquaintances if they could help in specific ways. Like, could they take him to a coffee shop for an afternoon, so that I could rest? After all, one of your goals in all this is for your husband to stay as healthy as possible and that means caregiver relief as much as possible, too.

Well, now, I feel like I've probably overwhelmed you! But my take home message is, please don't expect just you and your husband to handle this all by yourself. It takes a whole village to pull off a good transplant, and now is as good a time as any to start making contacts, asking around, and seeing what additional support resources you can develop. People love to help, especially for a worthwhile cause like yours, so you'll be happily surprised the offers some people will make when they learn of your predicament. Be sure to take them up on it!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.