• Cystic Fibrosis Sucks

    July 10, 2013

    Hi there Carrots N Cake Readers! My name is Lindsay and while I don’t have my own blog, I am a frequent reader. The lovely Tina has given me the opportunity today to share a story with you. It starts like this: cystic fibrosis sucks.

    My partner, Chad, is 32 years old and was diagnosed with Cystic Fibrosis (CF) when he was a year old.  He has taken incredible care of himself over the course of his life (healthy lifestyle, daily medications, breathing treatments, and frequent hospital stays to receive antibiotics), but over the last year has become sicker and sicker, which is inevitable with CF.

    image_6

    Last fall, Chad began to use continuous oxygen. In December, he was put on a transplant waiting list, making him an active candidate for a double lung transplant. While there is currently no cure for CF, a lung transplant rids the body of the diseased lungs and allows for the addition of an average of 5-10 years of life. We live in Northern New York and no hospitals in our area deal with transplants, so Chad was listed at Brigham and Women’s Hospital in Boston.

    After about six months on the waiting list, Chad was admitted to the hospital in Burlington, Vermont (our “home” hospital) on June 7th for a routine 2-week stay to receive antibiotics. Over the course of the stay, instead of feeling better like he usually does, Chad started to feel much worse. He had no energy, was increasingly short of breath, and running very high fevers. Things eventually got so bad that he had to be transferred to the intensive care unit and placed on a ventilator to breathe for him. When the doctors at Brigham and Women’s heard about the deterioration in Chad’s status, they de-activated him on their transplant list, stating that he was too sick to survive transplant. This was devastating for all of us. It seemed that what he had been waiting for for so long had so suddenly been taken away.

    image_7

    When it seemed like we were out of options, we were notified by Chad’s doctor that there was a still a chance. She had made some phone calls, and after some information sharing and persuasion, he had been accepted for evaluation by the transplant team at Mass General. Only a few hours later, Chad was flown by helicopter from Vermont to Mass General. Not long after he arrived, the doctors found that not only were his lungs no longer functioning, but he was also septic, meaning that his entire body and bloodstream were infected with many, many strains of antibiotic resistant bacteria. Over the next few days, Chad’s body went into shock and started to completely shut down. He was put on something called an ECMO machine, which was basically a bypass machine that took his blood, circulated it outside of his body and through a machine that did the work of his lungs for him. The blood would get oxygenated, and then enter back into his body through a catheter inserted into a large vein in his neck. Unfortunately, after a few days, this too stopped working and we were told by the doctors that they had come to the last resort. This would involve inserting the machine tubes that carried the blood directly into his heart. It would involve opening up his chest and there was a good chance that it may not even work, but it was the only option. On June 7th at 10AM, doctors wheeled Chad out of his room and down to the operating room, ready to do the procedure. On the way, they received a surprising phone call – a pair of healthy lungs that were a match for Chad had just been donated. It could not have been better timing.

    After nearly sixteen hours in the operating room, at 2:30AM on Monday morning, we heard the words we’d been waiting to hear for so long: Chad had new lungs and they were functioning beautifully.

    image_3

    Currently, we are about 40 hours out from surgery, and Chad is doing well. He is still sedated and on a ventilator to help support his new lungs, but is stable. The lungs themselves continue to function well and he has been started on all of his anti-rejection medications. As he was sedated when he went to surgery, he still has no idea that he even received the transplant. His family and I so look forward to the moment that he wakes up and we’re able to tell him that he has a brand new set of beautiful, healthy lungs.

    Because of how sick he was before transplant, Chad will likely remain here at Mass General for at least a month. He will need lots of rehab and physical therapy as well as the usual post-transplant care. After he is discharged, we will have to stay in Boston for at least a month to be able to attend follow up appointments, etc. As our home is nearly five hours away, this puts an enormous financial strain on us. Finding affordable short-term housing close to the hospital that is clean enough for a post-transplant patient to live in has been very difficult. The cost of food and simply living away from home is immense as well. Friends of Chad’s have so kindly set up a donation page online for us to help with these expenses and Tina is so graciously allowing me to share this page with you.

    image_2

    I hope that Chad’s story inspires all who hear it. Throughout this process, we were told that he would probably not live through the day/night on several occasions. Even so, Chad kicked butt right through and has made it to this point, right where he wanted to be. He is incredible – we have all nicknamed him Superman. He truly is. I ask you all to think about Chad’s story, his incredible will to live, and help us in any way that you are able. Here is the link to the donation page.

    I also ask you all to please consider organ donation. Without it, Chad would not be here with us today. We are so incredibly thankful to the family that made the decision to donate their loved one’s organs. They have given Chad the ultimate gift: the gift of life. They have also given me the amazing gift of a second chance at life with Chad. There really are no words to describe how thankful and grateful I am. If you’d like to legally register as an organ donor, or know someone that does, please visit this link: http://www.organdonor.gov. One person can save up to eight lives!

    Thank you all so much for reading – now go eat some cake! And maybe a carrot or two…

    Xoxo Lindsay (and Chad!)

    Pin It

    { 70 comments… read them below or add one }

    Emma July 10, 2013 at 4:57 pm

    Thank you for sharing this! I will keep you two in my prayers!

    Reply

    Amanda July 10, 2013 at 5:37 pm

    You two are in my prayers as well!

    Reply

    lindsay July 10, 2013 at 6:43 pm

    sending love and prayers to you and chad. <3

    Reply

    Elisabeth July 10, 2013 at 7:36 pm

    Your story totally made me cry! Sending prayers to you & Chad!

    Reply

    Kristen C July 10, 2013 at 8:41 pm

    I am a physical therapist who works with patients in the hospital status post lung transplant! Chad is going to do wonderfully :) I had a 32 year old CF’er who ran a marathon after her transplant! One of the hardest parts is getting used to not being on oxygen anymore-it can make people really anxious. More of a mental obstacle than a physical one. I will keep you in my thoughts and prayers!

    Reply

    Julie July 10, 2013 at 9:10 pm

    Good luck to you both, I know this story too well. My dad was diagnosed as a Pi ZZ alpha-1 anti trypsin genetic fatal lung disease when I was 14, and I watched him slowly die painfully every day for 10 years. He also received a lung transplant (double lung) in 2008 and 5 years out is well, but since alpha-1 is a liver disease that destroys both lungs and liver, he’s currently in end stage liver failure now. Since its genetic, I unfortunately also have the same phenotype of AAT, and am looking into liver transplantation at some point to save my lungs, as a marathon runner, I’ve seen my lung function progressively decline from my high of running Boston in 2008 to struggling to finish a marathon in under 4 hours now. Your partner living healthily no doubt helped him immensely. My dad was always healthy too and this has contributed to his relative good health in the 5 years since his transplant. I also try to live as healthy as possible, being vegan since my diagnosis in high school, though my celiac and crohns plus a sugar intolerance can make eating tricky.

    Good luck and many years of health and happiness for you and your partner!

    Reply

    April July 10, 2013 at 8:56 pm

    Thank you so much for sharing your story with us. I work with patients with cystic fibrosis, and sadly this story is all too familiar. I am so glad that Chad got his lungs and will keep your and your family in my thoughts and prayers.

    Reply

    Kelsi K July 10, 2013 at 8:59 pm

    CF has touched my life too. My cousin has been diagnosed and is on oxygen. A friend of mine also just had a double lung transplant and has recovered beautifully. I am keeping Chad in my thoughts and prayers so that he does too!

    I will second this post, go sign up and be an organ donor! It’s the most beautiful gift a person can give!

    Reply

    Cindy July 10, 2013 at 9:13 pm

    Is Chad enrolled in the Adult Cystic Fibrosis Assistance Program offered by the New York State Department of Health? They might be able to help. More information can be found at: http://www.health.ny.gov/diseases/cystic_fibrosis/get_help.htm

    What a miracle story. I hope you post an update down the road.

    Reply

    Tom T. July 10, 2013 at 9:43 pm

    This is a very touching story. I hope everything works out for the best. I have played in a hockey in a tournament the last three years that supports the Cystic Fibrosis Foundation. The organizer has two nieces that were both diagnosed with CF. He founded Make CF History http://thecharityclassic.blogspot.com/. Check him out on Twitter @MakeCFHistory as well. We raised over $50K during a three day tournament this year.

    Reply

    Jolie July 10, 2013 at 10:10 pm

    That was a beautiful gues post… I am so happy for Chad and that you and your famiyl never gave up. God Bless you and your family.

    Reply

    Jolie July 10, 2013 at 10:10 pm

    @Jolie: guest* post

    Reply

    Jolie July 10, 2013 at 10:12 pm

    @Jolie: I’m sorry! I am very dislexic this evening! My next typo was family*!

    Reply

    Jennifer July 11, 2013 at 9:14 am

    Wow, I don’t usually cry at stories like this, but I had tears in my eyes halfway through. I wish I could donate, but I don’t have the funds. I just wanted you to know how inspiring your story is and I wish Chad a full recovery & a long healthy life.

    Reply

    KateL July 11, 2013 at 11:50 am

    Lindsay and Chad,
    Good Luck to both of you!!!
    I live and work in Boston (at a different hospital), you’re going to get great care! I live in Jamaica Plain, which is about a 15 minute cab ride away from MGH. If you need to come take a shower, do some laundry, or sleep in a real bed for a night, I’d be happy to host you! I have a dog, which I think would be a no-no for a post transplant pt, but anything else I can do for you guys, please let me know!
    Kate

    Reply

    Amelia July 11, 2013 at 12:16 pm

    What a wonderful post! I’m pulling for you and Chad. I used to work for the Cystic Fibrosis Foundation and all CF patients have a special place in my heart. Please keep us posted on Chad’s progress!

    Reply

    Peach July 11, 2013 at 1:25 pm

    Donated and wish you both the best. Love and strength your way.

    Reply

    Mary Ann July 11, 2013 at 9:16 pm

    My prayers are with you. Cystic fibrosis is a nasty disease that rears its ugly head without any warning. My son has CF and we have seen first hand how your health can suddenly take a dive. We are always thankful for the giving and knowledgeable staff that helps him through each clean out and keeps him focused on his treatment. I hope for a full recovery from this transplant. Blessings to you.

    Reply

    Bradly J. Wilkerson July 12, 2013 at 11:35 am

    so ive been thinking of the future, im seventeen and starting to worry about lung transplant that i will have to have. my mom says in order to live a long life like everyone else, i will have to have a double lung transplant. i saw a statistic saying after surgery 80% come out alive. then after 5 years 50% live. that freaks me out. In about 20 years, will CF be cured? In about 20 years what will the statistics look like? i will be 40 almost by then, and guessing i will need one by then. By the time that is which is 20 years or so, will everyone survive the surgery itself and will almost every live a normal lifespan? im very worried.

    Reply

    Leave a Comment

    { 3 trackbacks }

    Previous post:

    Next post: