Need to learn more about End Stage CF (Supporting a Friend)

[JustaCFmom]

I am sorry to hear he is intubated, but I hope you see improvement & he is able to heal with the help of ICU. I found this description about Claire Wineland and her ventilator experience. She says she had about a 1% chance of survival. Please don't give up hope.

"On April 13, 2010 after a relatively routine surgery, Claire became septic and within 24 hours, was in complete lung failure. Her parents were given the option of watching Claire die or putting her on a dangerous oscillator vent, which no child with CF has ever come off of. Her parents opted to put her on the high powered vent and into a drug induced coma so the doctors could try everything possible to reverse the damage to her lungs and her body.What followed was a remarkable two-week journey of prayer, love and healing. The family was buoyed by an inconceivable amount of support from friends and family. While Claire lay in her coma, kept alive by the maximum amount of life support possible, her friends and family began to pray. Spiritual groups of every possible denomination worldwide were given Claire’s name or in many cases her picture, round the clock vigils of sometimes 50 or more people met in the hospital cafeteria and Claire’s parents and family slept by her side and in the Pediatric Intensive Care Unit for 17 strait days.
So many people were inspired by Claire’s journey that a public Facebook page, “Claire Wineland Love, Songs and Updates” , was created to disseminate the seemingly ever changing information. Within two weeks, the fans on the page grew to over 900. Out of this grew the desire and need for a foundation.
Claire came through this harrowing event inspired, passionate, and very excited about making a difference for other children and teens by sharing her experience, strength and hope with them. She continues to suffer many setbacks but ..."

http://clairesplacefoundation.org/about-claire/

 

[windex125]

This is always a very sad situation, the love and support that this young man has received from yr daughter and yr family are wonderful. I say make him as comfortable as he can possibly be, hold his hand. Rub his forehead, let him feel the love come from you to him. If his time has come it's out of yr. hands. The sad thing abt transplant you have tobe so sick and yr. numbers so low,I am not sure how this makes sense for the body to survive? I went yrs ago to UNC for a counseling session, only to decide if I got that sick then the lungs if available shd go to a younger person, and took myself off the list. Bless you and yr. family for all you have given him the last year of his life. I as well battle a NTM bacteria and have been very sick at times and somehow am still here. You have raised a wonderful strong daughter. Having the love and support of yr. family has made such a difference to his life, he may not have been able to verbally tell you, but I will Bless you. Pat - CF/60

 

[cam]

I juat hate hearing this I will pray for miracle and his peace and comfort I hate it so bad I wish they would find a cure already and stop this suffering anyway sorry I get worked up keep us updated and I will keep prayers going

 

[QTPie]

2 suggestions where you may find helpful information:
1) CF Foundation's site - on what to expect w/re to the process of transplant : http://www.cff.org/treatments/LungTransplantation
2) CF Roundtable - newsletter published by adults with CF : http://www.cfroundtable.com/?s=transplant

 

[slhogan]

Thank you for the book recommendations, links, and kind words

We have been very worried, but it looks like he's going to thankfully pull through this flare-up. After a few days on the ventilator, he was finally taken off and just moved our of the ICU and into a regular room. It was a very frightening experience for him and for us. I have ordered the book and have been reading through the links. I've also become used to reading the medical journal articles.

Because of the macrobacterial infection and the low BMI (15), a lung transplant just doesn't seem possible right now. From what his doc tells him and my daughter and from what I'm finding in the medical journals, he would have a very small chance of surviving the transplant at this point. Because he is on state medicaid, he has to work with the transplant hospital that his medicaid works with, so going out of state is not possible.

At this point, it's pretty much a game of playing it day by day. We'll hope for improvement so that he qualifies for a transplant. In the meanwhile, we'll continue to be prepared for the eventual end. We're just grateful that he's part of our lives in the meanwhile.

 

[Gammaw]

Wonderful!
It warms my heart to hear you're so glad to have him in your life. And he's lucky to have you as well. It sounds like he's found a wonderful family.
I was concerned about insurance. Medicaid is a federal program with federal requirements but the individual states have a great deal of control over requirements. They rarely allow medical care outside state boundaries. If he can rally enough for a transplant and need an outside Center, don't let Medicaid give you No for an answer without a fight. If you call the Center you need, they may be able to help you get coverage from your State Medicaid group under special circumstances.
Do come here often! We are happy to help.