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Kathryn's Journey for New Lungs

$44,252 of $85,000 goal

Raised by 308 people in 19 months
Help Kathryn achieve her dream of breathing like the rest of us do.

breaths 4 kathryn

 I am Allen Norris, my wife and I have put together this campaign  for our beautiful daughter, Kathryn. Kathryn is a joy-filled 21 year old who has battled Cystic Fibrosis since birth. CF is a genetic disorder that affects not only  the lungs, but also the liver, pancreas, kidneys, and intestine. The disease progressively damages these organs, and long-term issues include increasing difficulty breathing, frequent lung infections that require extended hospital stays, and massive doses of antibiotics. But even with her challenges, Kathryn has been on the football dance squad for three years, a member of the Maryville College Choir, an ALANA diversity scholar, and has made the Dean’s List several times. She is also a member of a local philanthropy group, a ballroom dance assistant, weight trained the dance team, and an academic scholar in the arts and design. 

Kathryn is a brave fighter but she has now lost almost 80% of her lung function, and many of her favorite activities are now limited. A transplant is her only option. After an intensive weeklong evaluation at Duke University Hospital in North Carolina, we learned that Kathryn will not only need new lungs but a liver as well.  Transplanting both these organs makes for a very complicated surgery and requires that we relocate to Durham NC. The doctors have informed us that the transplant surgery and recovery will take about a year. Kathryn will need a caregiver dedicated to her for 100% of the time, a role her mom and I will gladly take on.

Kathryn's mother and I have covered her medical expenses to date but this next step is beyond us. Relocation expenses, lost salaries and medical expenses add up fast. Money raised by this campaign will help us provide the medical care and attention that Kathryn now needs.

 We kindly ask for you to help us get new lungs for Kathryn and to give her many more tomorrows. Your support is greatly appreciated.  Please share this campaign with others.

 We don't know how strong we really are, until being STRONG is our only option!

 

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Hello again,

Please allow me to apologize for the lack of updates on the Gofundme site. It has been a crazy roller coaster ride since surgery. Fortunately her recovery has been mainly calm and in the right direction. Kathryn is doing well and recovering daily.

I have tried to not fill your inbox with Kathryn news but sometimes I feel obligated to. So for those of you that want more updates, I have set up a semi-private site you can go to and receive daily updates if you want. I have been writing about this journey since the surgery. Please feel free to login and follow.

https://www.caringbridge.org/visit/breaths4kathryn

You would need to create a quick password and then you will have access to all the updates and images. This CaringBridge site was not set up for donations, so please do not. Donations made on this site goes to Caring Bridge and not to Kathryn.

Thanks again for your interest and support, Kathryn 2.0 is well on her way, to breathing freely.

Thanks
Al
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A breath of fresh air...

I know it has been some time since updating you un Kathryn’s Journey. A journey that will give her the gift of BREATH. As many of you know, we have been relocated in Durham NC for nine months and officially listed for her double lung and liver transplant. During this time of waiting and rehabbing, we have personally witnesses some 65-70 lung transplants with a variety of outcomes, mostly successful, but some did not go as hoped. We have cheered those who came and received their life extending gift and were able to return home, but we have all too often mourned with those who’s journey ended prematurely.

Our wait was much longer that expected due to some organ allocation rules that changed early in our waiting period. This new rule really affected the patients that were waiting on double organs like Kathryn. It was frustrating to see so many people come, get transplanted and successfully return home, while we just waited and waited.

Well on June 28, 2018, I received a call from her liver Dr. stating that they were looking at some organs that were a good match for her. She spoke to me, to Kathryn and even called Cristina in Maryville. She informed us that she would give us 30 minutes to accept them. At about 8:00pm, Kathryn accepted the organs. We were advised to come to the hospital by 11:00 pm and if the harvesting surgeons liked what they saw at the time of the donor operation, Kathryn’s transplant would begin early on the 29th.

At 9:02 Am on the 29th of June, Kathryn’s surgery started. At hour 5 we were notified that the liver was in and that they had started on the lungs. Three hours later I got a call that the surgeons needed to talk to us. That is when my heart jumped and felt like it was lodged high up in my throat. We were told to expect surgery to last 17-20 hours, why would the surgeons need to talk at hour 8.? As the elevator doors opened on the surgical waiting roomfloor, I exited to find both surgeons waiting on me. “Whats going on, whats going on..” is all that I could get of my mouth at that time. They responded in three words, “we are done”. In disbelief, I walked with them to the consult room where Cristina met us and they explained her surgery and their expectations. They were super pleased with the transplant and mentioned that she did so well that they expected a “fast track” recovery.

After two hours we were allowed to see her in the ICU unit. There she laid with dozens of tubes, bags of IVs, pumps, monitors and atriums on the floor half filled with oozing blood. As seasoned parents of a CFer, both our eyes went to the O2 monitor, she was saturating at 100% on room air for the first time since possibly 2 months old. Her new lungs were working perfectly. Two days later her rounding Drs came in and both the liver and lung teams all expressed their happiness with how she was progressing. They went ahead and approved her to leave the ICU and finish recovery in a regular room.

So here we sit on day 12 since the surgery and things continue to be advancing ahead of the Drs expectations. She is up walking, talking, texting, and just good old recovery. She was cut from armpit to armpit for the lungs and a simular incision a few inches lower for the liver. Two huge victory scars that will mark the struggles she has had to endure to get to this point.

Her dedication to her personal health and fitness the past 8 months has given her a great advantage in her recovery. She was the best shape of her life headed into her surgery and it has paid off in the recovery process so far.

Now I expect to be here in the hospital for a bit more and then after that it will Cristina and my responsibility to take her the rest of the way to full recovery.

You are receiving this update because at some point you were on Kathryn’s GoFundme campaign and more than likely donated. Kathryn, Cristina and I appreciate all of you immensely. Her campaign will continue on, especially now that she has entered the pricey part of her journey. We have only reached 1/2 of the goal set by Duke so if you can, please continue to share her story within your network. Every little bit helps.

Thanks once again
Al, Cristina & KATHRYN
A few hours before surgery
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Durham NC. June 9, 2018


The State of Our Union


I am shocked to notice that I have not updated this site in so long, I am sorry but life here is an extreme roller coaster. A lot has happened in the past few months. So I will just get into it.

In the past three months, Kathryn has been hospitalized twice, and visited the ER several times.

The first hospitalization was brought about after she ruptured her lung and air from her lung leaked into her rib cavity and eventually up her neck and face. This Subcutaneous Emphysema could be the weirdest thing she has ever gone through. The trapped air would percolate from one side of her body to another, from arms to neck and face. It made a crackling noise as it moved around. Her face puffed up and gave her the appearance of weighing 300 lbs. Medically there was nothing to be done with the rupture, just wait and hopefully the rupture would heal up. It did heal, but it took 8-10 days for the bubbles to be absorbed by her body. It was extremely painful and scary for the first few days. After a few days in the hospital and getting more comfortable with the bubbles is when she started to do selfies of the puffy face and the jokes flowed freely.

Shortly after being released from the hospital for the ruptured lung, she was hospitalized for a cold. This week long hospitalization stay was the beginning of a long run of three antibiotics. She had to do 8 weeks of these antibiotics, two oral and IV. We did the IVs at home for seven of those weeks and it was a grueling schedule. I had to connect her to her IV four times a day, so for eight weeks neither of us got more that 4 hours of sleep in a row. One of the antibiotics was very nasty and made her always tired, and with no appetite resulting in some weight loss. But she has bounded back and we are back on track.

The hospital stays and the ER visits are all a result of her Cystic Fibrosis. During her first hospitalization stay, her lung function had dropped to 14%. Yes, that is right, she was functioning with only 14% of her lung working. She still maintained her rehab schedule throughout all this.

The Road to Transplant.

The transplant journey has been long, we were told to expect a three month wait. Well that date came and went several times. We have now been here 8 months and still nothing.

I need to try and explain what she is facing with the waiting list. She is on two separate waiting lists, one for the lungs and the other for the liver. There is no combined organ waiting list. So it is like two Russian Roulette wheels needing to come up winners at the same time with the same donor. High odds. The Drs. here as just as frustrated as we are with the long wait. Duke lung transplant listed time is usually a week or two, not 8 months.

The cause of all this is that there has been a change in the rules of organ allocations. Nov 16th, one month after of being listed, this new rule went into effect. It changed the radius from which Duke can get organs. Now Duke can go out further for organs, but now hospitals further away can now come to Duke for organs also. So what seems as a freer movement of organs on the surface seems good, has severely hurt Kathryn. Due to the length of her surgery (20+ hours) her new organs MUST come from the Durham area. The organs viability is limited outside the body and they cannot afford the time needed to transport from somewhere far away. So the donor pool that Kathryn’s organs need to come from can now be accessed by all the big hospitals on the east coast or within a 250mile radius.

That said, Kathryn’s lung and liver score has been climbing. (this number/score is what is used to assign the organs to the recipients, the higher the better, but the sicker you are) As of 3 weeks ago, she is ranked #1 for lung and #3 for liver, so I was excited thinking that it would soon come, but no. I am starting to think it will take more time until both scores are in the number 1 position. Then it is still an issue with blood compatibility and several other factors. We will get there, just done know when.

On the Living front.

Our lease on the apartment was coming to an end and they raised the rent $300/month to renew. So we packed up and moved into a much better place. It will be a great place for recovery.

I am happy to report that Kathryn is in very good shape right now. All her rehabbing has paid off. We are in a good place right now.

Kathryn is ready for this long and difficult surgery, and Cristina and I are ready and prepared to be at her side throughout the surgery and the entire long recovery.

Your continued prayers and support are and will always be appreciated.

Thanks
AL (El Papa)
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Durham NC. Jan 31st. 2018

Well I thought I would give an update of our status here in Durham. We were told to expect a wait of up to three months for the right organs to become available for Kathryn. Well tomorrow will be the end of the third month. We have now been here four months and LISTED for three of those. The double organ is the issue. All of Kathryn’s new friends here, that only needed lungs, have all been transplanted and in some stage of recovery.
On Feb. 2th. Kathryn’s MELD score (numerical number used to assign priority) goes up by 10%. When that happens she will be at the top, or right at it on the wait list. Hopefully that bump in her score will get her the life saving organs she needs.
In the four months that we have been here so far, we have had some scares, some highs and some lows, but overall we are in good shape. Living among so many other patients on this same journey, you quickly realize that there are others in much worse condition than you are. So far we are blessed to be where we are at, and the condition we are in. Kathryn remains strong mentally, and is in the gym daily for 2 hours.
The wait gets long at times and the heightened nerves every time the phone rings is something that is hard to get used to. We are coping with it, with laughter, good food and the occasional nerf bullet gunfight. The only thing that concerns me about the longer wait is the amount of money that we are burning trying to maintain two houses at the same time and the lack of income. I know that most of you that are receiving this update have donated to Kathryn, but I need to start thinking outside the box as to how I will get the GOFUNDME campaign back on track after it flat-lined two months ago. If you have any ideas, please let me know. Maybe you might get your company or workplace involved. Any and all help would be greatly appreciated.
Kathryn is ready for this long and difficult surgery, and Cristina and I are ready and prepared to be at her side throughout the surgery and the entire long recovery.
Your continued prayers and support are and will always be appreciated.
Thanks
AL (El Papa)
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Raised by 308 people in 19 months
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