second double lung transplant?

casaraha

New member
this is my first post - i'm hoping this community will help me.

my boyfriend of 1+ years has CF and had a double lung transplant 2 1/2 yrs ago - so before we knew each other. the past few months have been really hard - hospital stays for a couple weeks, more trips to the doctors, and the diagnosis of chronic rejection. he's having more trouble breathing, his muscles hurt him, and he is loosing a bit of weight. beyond the question of "help! what can i do for him?" ....

i'm curious if anyone here has any information of a second double lung transplant? we learned this might be a possibility to get back on the list and have another one. any information would be helpful.

thanks in advance.
 

anonymous

New member
Joanne should know Suz at UNC who is around 2 years out on the second set (first set lasted around 3 years as I recall). Suz is currently in Italy (so doing well). Seems to be around your age.

What TX center are you at and do they re-TX?

CF 55 TX cepacia
 

anonymous

New member
Risa has had 2 double lung tx

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=8
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That is her blog
 

anonymous

New member
Some centers will do this. I know Duke does second transplants. I have seen them do well. I met a 65 yr man for a second lung tx and heart bi-pass at the same time and is going great.
 

anonymous

New member
They do second transplants in Boston, too. I know of someone who just got his second set and is doing much better this time around!
 

EnergyGal

New member
I had a second double lung almost after ten years so it was a much riskier operation. I had a much harder time the second time around but once I left the hospital I have been feeling really well. I say do your best to try and gain the weight eat throughout the day even if one is not hungry. A mini meal is always better than nothing. I eat about ten mini meals a day and have gained lots of weight.
 

Joanne

New member
Hi,

Second Lung Transplant is an option that many choose, for obvious reasons... they want to live.

Depending on the center your boyfriend was originally tx'd at, they may do a second tx, others will not do it, so then you need to look for another center. I believe Risa did this.

My girlfriend Susy Dirr, who had Cepacia too, did have her 1st tx at UNC in March of 2001, and she had her 2nd tx in May of 2004. She is doing so well, travels, works and my personal opinino and I think Susy would say the same, this 2nd tx is going much better than the first.

Find out the history of retransplant at the center you are interested in, see how "comfortable" they seem about doing it. It does work for many, and others it is a battle afterward. To me it seems the sooner you have it after the 1st tx the easier time you have. So your boyfriend has that going for him.

Have they tried all the various meds on him to help him? Like Azithromycin, Rapamune ?

Joanne Schum
 

anonymous

New member
Hi,

I was on line looking at what the sucess rate for a double lung retransplant for my husband and found this site. He had his first transplant in October 2005 and has had every complication know to modern science (even RSV pneumonia). Unfortuantely for him, the airways keep closing down and the center he goes to is thinking about doing a retransplant for him also. He is only 38 years old with 2 boys, 9 and 7.

After reading everyone else's reply to your question, it gives me hope that he may do better after second surgery.

I wish you and your boyfriend all the best of luck in the world and I will say prayers for him that his center will do the retransplant. If not, I agree with the other people: FIND A CENTER THAT WILL. I know that if my husbands center did not, I would. He goes to Johns Hopkins.

Angela
 

EnergyGal

New member
Since Retransplant is a much riskier operation, I say do all you can to gain weight and exercise to increase your strength for endurance. Lots of deep breathing exercises are very important.
Risa
 

anonymous

New member
When I read your post, it was almost like looking into a mirror. My boyfriend of a year had a double lung transplant 5 years ago (before we met) and now he is going through the same problems as your boyfriend. His doctors have started discussing another transplant with him. IHis doctors have told him that the risks are pretty much the same as the first transplant. I'm pretty worried, so I can understand what you are going through too.
 

casaraha

New member
thanks so much for everyone's responses.

my boyfriend had his 1st transplant at Froedtert in Milwaukee, Wisconsin - and sadly they do not do 2nd lung transplants. UW-Madison will do 2nd transplants, so there is the possiblity there or at Loyola (in Chicago) - as far as near-by options, at least there are a few.

it's been hard lately. he's getting real skinny, and he has really bad days. He often doesn't feel well enough to walk around, and doesn't get a lot of fresh air in general. sometimes i feel helpless. and sometimes i feel more like his caretaker than his partner.

thankfully he has an appt with his pulmonary doc this week. i'm still all so new at this, i always want to ask questions and learn more, but don't know what to say. the doc's haven't recommended re-transplant yet, we're looking into it independently. i don't know if it's premature or not. as far as meds, i don't know everything he has been on - i've heard 'Azithromycin' amongst all the meds at some point though.

thanks again, and i'll report back soon.
 

anonymous

New member
I had a second double lung tx July 05. I understand how he feels but tell him this, he needs to eat and get stronger or else he will not get transplanted. what I did was I had three main meals and lots of little snacks. I love to eat granola bars and a yogurt drink. Lots of extra calories. When getting up in the middle of the night if he goes to the bathroom tell him to grab a high calorie drink. If he is too thin they probably will not transplant him until he gains some weight. Second transplants are harder in recovery. I would go to the center that gets more organs donated as a whole. Loyola is a good hopsital and then there is the University of Chicago as well.

The more he moves around the more he will be able to move around. Once someone stays put it is hard to get up and go. Especially after transplant. He has to show the tx team that he is willing to do the work.

I am sure he can make some improvements. Is he on oxygen at this time? IF not, then get on his case to motivate him. Tell him the mind in motion wll get the body in motion.
Take care
Risa
 

casaraha

New member
casey had han appt this past thursday - lung capacity is at 28% and he's lost 9 pounds in the last month. he actually went on oxygen this afternoon. froedtert said they'll retransplant him if that's his choice - but they've only done three 2nd double lung transplants, with only 1/3 of them surviving one year - not the greatest statistics. Dr Love at Loyola is a good possibility - has anyone had experience there or with him (he just transferred from UWMadison)? They are starting the procedure to get him back on the list.

Casey has a surgury in a couple weeks to get a stint out of his right lung, and after that's healed well enough, he's going to go on Rapomycin (spelling?). And I was correct - he is on Azithromycin.

as far as gaining weight - what drinks/snacks are highest calories and fat? hopefully with the oxygen he'll get a better appetite. i'm spiking his food with a lot of whole milk and butter where i can though.

i might need help/advice on encouraging him to be more active - but i'm going to wait to see how the oxygen effects that aspect.

thanks.
 

anonymous

New member
I would go to Loyola but I would ask the other center in Chicago how many lungs come in per year. Is he going for a single lung or a double? Why did he lose so much weight? That is going to be so hard for him if he is under weight. Tell him to eat and eat and then some. Start little by little. Read some advice under the exercise forum on this site ideas on how to gain weight.

I am sure Dr. Love is great and any doctor who is willing to take a chance and retransplant has to be a great doctor. If he is going for one lung the wait time can be sooner.

He has got to get motivated each and every day if he wants to survive. Watch out on using too much oxygen as that can make matters worse. Too much oxygen can also mean not enough CO2 and with CF too much oxygen can mean Too much CO2. What type of Chronic does he have? Is it the pulmonary fibrosis kind?

By the way, Rapamune or Rapamycin is a great drug. He should have been on that as soon as he got the chronic but if he is going to get retransplanted he should not be on this drug prior to three months before. Mention this to the team as yes it might hault the chronic but if he is going to be opened up being on Rapamune can be very difficult to heal with the lung anastomosis. They found this out when patients who started taking Rapamune after their transplant their chest cavity did not heal as quickly. Please mention this to the doctors.

I will write back
Risa
 

Grendel

New member
How is it you all are affording 2 double txs? I am looking at one and I may not get one as I may not afford it? Also, Glen Allen died this past year praying for the funds to get a dtx?

Part of me thinks that getting 2 dtxs is almost beyond selfish, but I am not there and can't speak to this.

Please explain.

Thanks.
 

Joanne

New member
Hi,

Lung tx is very expensive, but some people have health insurance that will cover it. I forgot if Glenn had any insurance at all. And I think he had cepacia, so it was hard to get listed and stay alive. Some people pay a lot for their health insurance, so they should be able to take advantage of that. I pay dearly for my insurance and they would cover a 2nd tx.

Why is your insurance hesitating?

Joanne Schum
 

EnergyGal

New member
It is not wise to judge others but I do understand how you feel however, I did not take lungs from anyone else. I was the only one in my height and blood category to accept my second pair of new lungs. I did feel a sense of guilt taking lungs when someone has not yet received a pair but my doctors assured me that I was not in any competition with anyone on the list. If I was even in the region, they told my family there were many reasons why they took on my complicated case and I am forever grateful. There are many factors why others get a second chance. If you are ever in the position to need new lungs and your insurance will pay I am sure you would take the chance to live rather than die.
 

JazzysMom

New member
Win Ace had NC Medicaid, but because he had Cepacia they would not authorize his tx. Basically they said it was a waste of $$,but not in tho words. A 2nd tx to me is only a waste if the person receiving it is abusing their body. Such as a smoker continuing to smoke after receiving lungs that could have went to someone else.
 

Grendel

New member
"Part of me thinks that getting 2 dtxs is almost beyond selfish, but I am not there and can't speak to this. "

My judgement is fair, and conditional to respect those in disagreement.

And I know that my own sense of community would prevent me from seeking multiple transplants. I already am in a position of knowing that my choices are a transplant or death, and given my background, i could not forsee seeking other transplants. Ultimately the situation would have to be highly unique for me to consider overriding my beliefs. If anyone wants multiple txs, great.

And my original question regarded paying for the Dtx, not so much as the surgery but moving to the transplant center and living there for the duration. By my estimate, that is a huge percentage of the patient's out of pocket expense. Where are you all finding the money to do this? Not all of you can be rich (or can you be?)?


Thanks.
 
I

IG

Guest
There are programs that help with this. For instance for younger patients there is the ronald mcdonald charity house that are usually found within proximity to the hospital. They provide a place to stay for a smaller fee than hotel, or insurance is willing to pay, etc. There is also in hospital housing sometimes, etc. There are also foundations that help in matters like this. Usually your tx center will have a list of resources that are available to you.

And heck if some of us are one medicaid we sure aren't rich. Same goes for insurance.. probably paying copays and premiums through the nose.
 
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