second double lung transplant?

Joanne

New member
Grendel,

As far as affording a 2nd tx, it is hard. It is hard to afford the first one. Most insurances will cover a 2nd tx.

As far as moving, living expenses... first... not everyone has to relocate. 2nd, many people raise money for tx expenses. My company I worked for raised the money for me to cover my rent, and expenses... .so no money out of my pocket.

Get a group of friends together and start planning how this can be done. More people, more resources and more money.

As far as the "ethics" of retransplant.... hmmm... that is something that is very full of many feelings for me. I have friends who got their lungs and immediately things were not good.... should they not get another chance? Why wouldn't they be entitled, it was no fault of theirs. For the person who had their tx, 5 years, 8 years, 10years and now need retransplant, should they not get another set of lungs? Well, if they have been compliant, followed the rules of the their center,, take care of themselves, why not give them another set? They have proven they are not a bad risk. Someone who is a first time recipient might be a bad risk, not take care of themselves, not take meds as told, even turn to smoking ( Yes I know a CFer who never smoked pre tx, but post tx she did.) so they are not proven, while the long term one has proven they are not a risk.

It is an emotional filled topic I am sure... lots of thinking... option research is in call.

Joanne Schum
 

casaraha

New member
casey has medicaid. i was not with him when he had his first lung tx, but from what i gathered, he and his family did not have many (or any?) costs associated with the tx and hospital stay afterwards.

an update on casey: froedtert in milwaukee will not take him as a candidate for a 2nd lung tx. his bone scans showed that his bone density is too poor for them to risk what could happen. we're not giving up though - we will be going to loyola to see what they have to say. please keep him in your thoughts - it's a real hard time right now.
 

karismom

New member
my daughter has had a double and a single and is very ill now. we are looking into possibly a THIRD one it is very frightening. I don't think that giving a single the second time was the right choice, having two different transplanted organs in one person just does not make sense to us. I sincerely hope all goes well for your boyfriend God Bless you both.<img src="i/expressions/rose.gif" border="0">
 

casaraha

New member
i just wanted to let everyone in the cystic fibrosis forums who have read my posts that casey passed away peacefully yesterday. i was by his side until the very end - it was time for him to leave his suffering behind. many thanks to all of you who have had him in your thoughts. he was so loving, and so easy to love. there will be a service later this week, probably friday, in stevens point, wisconsin. i will check back to the forums on occasion. i will continuously pray for everyone whose lives are affected by cf.
KATIE
 

Laurie

New member
Katie,
I am so sorry to hear that Casey died. I feel so sad that he wasn't able to get a 2nd transplant in time. As I also suffer with CF I just think that now he doesn't have to suffer anymore and he is peacefully sleeping. The comfort that I find is that someday he will be resurrected to a healthy wonderful life on earth free of CF. This hope is found in John 5:28-29, Psalms 37:29 and Reveleation 21:3, 4. This is what keeps me positive and able to endure my difficulties and I hope that it brings you some real comfort.

Please know I am thinking of you.
 

karismom

New member
Dear katie

Oh Honey, I am so so so sorry about casey my heart is broken to hear the news. My kari has 28% function and she and I cried so hard when I read the news about casey. God bless you katie he was so lucky to have you. I don't know what else to say but you are in our prayers.

Lisa and Kari <img src="i/expressions/brokenheart.gif" border="0"> <img src="i/expressions/rose.gif" border="0">
 

TEAMCF

New member
<b><span style=" font-size: xx-small; font-family: Verdana;">Hi
Casaraha,   I am 2 years out with a double lung TX and
having chronic rejection too.  Please let me know if you have
any information regarding another TX.  What center did he have
his at?   I had mine at Stanford and I am now transferred
to University of Washington.   since I live in WA.
  Well any info you get please let me know.
  let him know he's not alone!!  </b><br>
<br>
Brooke
 

asor24

New member
hello evry one!
my name is zvi 50+1.
underwent a double lung becouse of c.f. on 01/08/2000
things were great for 4-5 years
in the past 1.5 years things god bad and im on the list again for a single lung transplant here in Israes in the bigest transplant center in Isralel.
i wish luck for all of you who are waintin and for me to.
home envery one will make becouse life is storong than eveyr thing alse.
may each one his god may be with him.
becouce my god is my wife.
Zvika
Israe
www.my-cf.coml
 

asor24

New member
hello evry one!
my name is zvi 50+1.
underwent a double lung becouse of c.f. on 01/08/2000
things were great for 4-5 years
in the past 1.5 years things god bad and im on the list again for a single lung transplant here in Israes in the bigest transplant center in Isralel.
i wish luck for all of you who are waintin and for me to.
home envery one will make becouse life is storong than eveyr thing alse.
may each one his god may be with him.
becouce my god is my wife.
Zvika
Israe
www.my-cf.coml
 

asor24

New member
hello evry one!
my name is zvi 50+1.
underwent a double lung becouse of c.f. on 01/08/2000
things were great for 4-5 years
in the past 1.5 years things god bad and im on the list again for a single lung transplant here in Israes in the bigest transplant center in Isralel.
i wish luck for all of you who are waintin and for me to.
home envery one will make becouse life is storong than eveyr thing alse.
may each one his god may be with him.
becouce my god is my wife.
Zvika
Israe
www.my-cf.coml
 

asor24

New member
hello evry one!
my name is zvi 50+1.
underwent a double lung becouse of c.f. on 01/08/2000
things were great for 4-5 years
in the past 1.5 years things god bad and im on the list again for a single lung transplant here in Israes in the bigest transplant center in Isralel.
i wish luck for all of you who are waintin and for me to.
home envery one will make becouse life is storong than eveyr thing alse.
may each one his god may be with him.
becouce my god is my wife.
Zvika
Israe
www.my-cf.coml
 

asor24

New member
hello evry one!
my name is zvi 50+1.
underwent a double lung becouse of c.f. on 01/08/2000
things were great for 4-5 years
in the past 1.5 years things god bad and im on the list again for a single lung transplant here in Israes in the bigest transplant center in Isralel.
i wish luck for all of you who are waintin and for me to.
home envery one will make becouse life is storong than eveyr thing alse.
may each one his god may be with him.
becouce my god is my wife.
Zvika
Israe
www.my-cf.coml
 

BMan

New member
Hello there,
OK..I am completely new to this forum...hence replying as I do not know how to open a topic. I have a question for those of you who have been tranplanted. My son received his double lung tranplant Nov. 2006...he has had about 3 rounds of rejection since and at the moment is in the hospital with a middle R lobe pneumonia.....I have just been informed that along with his usual MRSA..he has cultured positive for Aspergillius!!!! His PFTs went from an 80 on Sept. 20th to 50 on Oct. 29th...home numbers were steady until the 26 and then they started a huge decline obviously!! I always feared Aspergillus, anyone of you have experience with this fungus! Poor guy is scared...he lost a friend due to that specific fungus just before he got transplanted.
 

BMan

New member
Hello there,
OK..I am completely new to this forum...hence replying as I do not know how to open a topic. I have a question for those of you who have been tranplanted. My son received his double lung tranplant Nov. 2006...he has had about 3 rounds of rejection since and at the moment is in the hospital with a middle R lobe pneumonia.....I have just been informed that along with his usual MRSA..he has cultured positive for Aspergillius!!!! His PFTs went from an 80 on Sept. 20th to 50 on Oct. 29th...home numbers were steady until the 26 and then they started a huge decline obviously!! I always feared Aspergillus, anyone of you have experience with this fungus! Poor guy is scared...he lost a friend due to that specific fungus just before he got transplanted.
 

BMan

New member
Hello there,
OK..I am completely new to this forum...hence replying as I do not know how to open a topic. I have a question for those of you who have been tranplanted. My son received his double lung tranplant Nov. 2006...he has had about 3 rounds of rejection since and at the moment is in the hospital with a middle R lobe pneumonia.....I have just been informed that along with his usual MRSA..he has cultured positive for Aspergillius!!!! His PFTs went from an 80 on Sept. 20th to 50 on Oct. 29th...home numbers were steady until the 26 and then they started a huge decline obviously!! I always feared Aspergillus, anyone of you have experience with this fungus! Poor guy is scared...he lost a friend due to that specific fungus just before he got transplanted.
 

BMan

New member
Hello there,
OK..I am completely new to this forum...hence replying as I do not know how to open a topic. I have a question for those of you who have been tranplanted. My son received his double lung tranplant Nov. 2006...he has had about 3 rounds of rejection since and at the moment is in the hospital with a middle R lobe pneumonia.....I have just been informed that along with his usual MRSA..he has cultured positive for Aspergillius!!!! His PFTs went from an 80 on Sept. 20th to 50 on Oct. 29th...home numbers were steady until the 26 and then they started a huge decline obviously!! I always feared Aspergillus, anyone of you have experience with this fungus! Poor guy is scared...he lost a friend due to that specific fungus just before he got transplanted.
 

BMan

New member
Hello there,
OK..I am completely new to this forum...hence replying as I do not know how to open a topic. I have a question for those of you who have been tranplanted. My son received his double lung tranplant Nov. 2006...he has had about 3 rounds of rejection since and at the moment is in the hospital with a middle R lobe pneumonia.....I have just been informed that along with his usual MRSA..he has cultured positive for Aspergillius!!!! His PFTs went from an 80 on Sept. 20th to 50 on Oct. 29th...home numbers were steady until the 26 and then they started a huge decline obviously!! I always feared Aspergillus, anyone of you have experience with this fungus! Poor guy is scared...he lost a friend due to that specific fungus just before he got transplanted.
 

EnergyGal

New member
i never had any fungus. There are anti fungal drugs and I am sure he is currently taking them. I think the only way to bring down the fungus is with the drugs and avoiding sugary foods. Sugar breeds fungus big time.

I hope he can bring up his numbers soon. I have heard of a few patients who had a fungus make a full recovery.

Tell him I said, I wish him well and tell him to have faith.

Walking and if he can get some fresh air that will help his mind and body.

Take care
Risa
 

EnergyGal

New member
i never had any fungus. There are anti fungal drugs and I am sure he is currently taking them. I think the only way to bring down the fungus is with the drugs and avoiding sugary foods. Sugar breeds fungus big time.

I hope he can bring up his numbers soon. I have heard of a few patients who had a fungus make a full recovery.

Tell him I said, I wish him well and tell him to have faith.

Walking and if he can get some fresh air that will help his mind and body.

Take care
Risa
 

EnergyGal

New member
i never had any fungus. There are anti fungal drugs and I am sure he is currently taking them. I think the only way to bring down the fungus is with the drugs and avoiding sugary foods. Sugar breeds fungus big time.

I hope he can bring up his numbers soon. I have heard of a few patients who had a fungus make a full recovery.

Tell him I said, I wish him well and tell him to have faith.

Walking and if he can get some fresh air that will help his mind and body.

Take care
Risa
 
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