Help Hope Live Update, May 24, 2017

Waiting. It's hard on your nerves. First we were waiting to hear if I was going to be a viable candidate for Duke's Lung Transplant Program. A week of rigorous medical testing in January, and I received a letter telling me I had made the grade. Yay, Kate. It felt good to be accepted.

Next came the wait to actually be placed on UNOS's list. That kept me busy for a while. I desperately wanted to be on that list, because until I was, my condition would worsen, but there could be no hope for relief. But first there were a lot of loose ends that we needed to tie together. More medical appointments to be made, caregiver classes to attend, fitness goals to be met and maintained and, perhaps most importantly, fundraising. We needed to raise at least $10,000 prior to listing. That goal was met fairly early in the process, thanks to you, my wonderful, generous friends. With your support and your prayers, I was finally listed. I felt like I had won the coveted Mirror Ball Trophy.

What next? More waiting. Now I am waiting for a phone call. There are still loose ends, but it has gotten to the point that if they called me now, this minute, and said "We think we have a lung for you," I would drop everything and run, knowing the details would somehow work themselves out. I have a wonderful bag, but there's nothing in it yet. I won't need anything--just a ride to the hospital. And my caregivers. And prayers--lots of those!

Waiting is getting harder. Breathing is getting harder, and my oxygen needs are increasing. Doing everything is getting harder, including sleeping through the night. I constantly remind myself to trust God, to envision the positive outcome I desire, and to stay focused on that. I try, but sometimes I fail. That's gotten harder, too.

I have no idea how long I will wait. I just know I have to do it. And I know that prayers are helping, so please continue to mention me in yours? Thank for you that, and for all that you have already done.

Love,

Kate

Help Hope Live Update,May 14, 2017

May 09, 2017

Kate's husband, Greg here this time. After seven + years knowing she was working faithfully towards today, in the 11a hour, May 9, 2017, Kate was "listed" for lung transplant at Duke University Hospital. Now the anxiousness begins in earnest. A bag with necessities will be prepped and ready to go with an hour or so notice to get to Duke when they call. It could be days, weeks or even a few months, but my Kate will stay ready to handle the surgical trauma and she'll recover to an extended, more vibrant life without supplemental oxygen. We pray and thank you all for your continued support. Stay healthy family and friends.
Happy Mother's Day!

It's been an eventful week and my emotions have been all over the board, but as I sit down to write this, I feel happy and full.

If you read my husband's update (above), you know that I am now listed! That happened last Tuesday, and it feels like a huge hurdle has been crossed. I had just returned from my rehab session in Greensboro, and opened my e-mail to find a message from my coordinator telling me it was official. She was still in the conference, but she knew I'd want to know right away. She was right. If she'd told me in person, I would have hugged the oxygen out of her!

It seems like it's been a long wait to get to this point, but it may very well be that we "ain't seen nothin' yet."

How long will I have to wait until an organ match is found for me? No one can say. The average wait time at Duke is about a month after listing. About half of the people that started rehab with me already have new lungs. But I have a high number of antibodies. When I try to explain that, it becomes ridiculously complicated. What it means is that about 70 percent of the population would be unsuitable donors for me. So I can expect a longer wait than average. The good news is that, now that I'm listed, I am ready when the call comes.

As always, I end by saying thank you, and asking for your continued prayers. Your prayers have brought me this far, and your financial assistance and other support is something we could not do without. Please continue to pray for patience and peace as we wait, and maybe include some prayers for my donor family, whoever they may be. Thank you. I love you all.

Help Hope Live Update, May 5, 2017

I keep reminding myself that something could still come up--something they just haven't thought of yet. I'm almost afraid to hope. Since January, when I made it through an entire week of evaluations at Duke in the hopes of being accepted into their lung transplant program, I have been waiting for the news that I have been officially placed on "The List." Today will live in my memory as the day it started happening.

Of course I will continue having tests, right up to and beyond my transplant. But for now, the results are all in, my health insurance has given approval, and today I met with my coordinator and signed all the consent forms. I will be recommended at the team meeting next Tuesday, and could very well be listed that same day.

I am ready, yet I can't quite imagine how it will actually feel to get the phone call confirming that it's official. I get goosebumps thinking about it. Will it be a rehearsal for when I get the call telling me they've found a lung match for me? It seems like I've been waiting such a long time already. I hope it won't be too much longer. But as I wait, I am going to continue to enjoy this life I have now, because I know it will be different afterwards. Still good. Just different.

I am so grateful for all of your prayers, for your love and support. They are the only explanation I can think of for the calm I feel. I hope I will never again be unconscious of the blessings that our friends have been in our lives. Thank you from my heart--our hearts--for everything.

Help Hope Live Update, April 22, 2017

Hi. Still some questions, but we're moving in the right direction! Necessary appointments have been made, a plan for getting everyone to the appropriate classes is in the works and, thanks to your generous donations, we're halfway to our fundraising goal! I can't thank you enough!

Yesterday I had my paralyzed vocal cord injected with collagen. It was not exactly what I expected--to walk out of the clinic singing "Total Eclipse of the Heart" at the top of my lungs. It actually hurt a lot more than I thought it would, and my voice, while definitely stronger and louder, is...well, my daughter said I sounded like "an articulate frog." I'm assured this is temporary.

Next week I will have another swallowing (FEES) test to see if the injection did all we hoped it would.

I need to get a tetanus booster and be cleared by Psyche--it could happen--and if all goes well, I'll soon have a coveted place on that list!

Again, thank you all so much for all of your prayers and your kind words of love and offers of help. I definitely feel that I have lots of companionship on this journey. I pray for all of you in return!










The three video clips, taken by my daughter, Meagan, are me in the doctor's office, just before my vocal cord injection, an hour later in the car on the way home, and one week later, almost back to normal. Now, six weeks later (June 2017), my voice has returned one hundred percent.

Help Hope Live Update, April 28, 2017

This is not really the kind of update where I give you new information that you don't already know. It's just me sitting here with a grateful heart on a Friday afternoon, feeling like I want to share something with you. How about if I let you in on what we're thinking is going to happen in the next week or so?

The collagen injection into my vocal cord last week appears to have been a success, at least as far as my voice is concerned. Everyone who knows me is thrilled, because the fact that I literally had no voice for about six months did not in anyway stop me from saying words. Now it's just much easier to hear them, so yeah, success.

Next Tuesday will be the real test--my FEES test. I don't know what the initials stand for, but the test involves a small camera inserted into my throat through my nose, which will then record what happens as I swallow various things dyed with green food coloring. If the injection did everything we hoped for, my newly plumped vocal cord will act like a GPS in my throat, making sure nothing makes a wrong turn and ends up in a windpipe or a lung.

I also have three other appointments on Thursday; there's always something else that needs to be checked and cleared. Once those results are in, assuming all goes well, I will be recommended for listing the following week!

This is starting to feel like it's really happening. I have already received so much from you, yet I ask you to continue to keep me in your prayers. Thank you with all of my heart.

Help Hope Live Update, April 14, 2017

Hi, it's me, Kate. Wow. I am overwhelmed by the way this is going. So many people are helping us on this journey with prayers and positive thoughts, rides back and forth to Durham and, of course, generous donations. When we set this up, I felt like we had an unattainable goal, but here we are, almost at the $10,000 mark we need to reach before I can be listed.

I would love to be able to give you a definitive answer as to exactly when my name will officially be added to the UNOS list, but for now, there are still more questions than answers. What I can do is try to explain where we are now...

In addition to the financial goals, there are some other standards that need to be met. I began having trouble swallowing a couple of years ago. I attended speech therapy, where I learned exercises to strengthen those muscles. Recently, it was discovered that I have a paralyzed vocal cord. I had a CT scan last week, and am waiting to see what the next step will be. It's likely that the scar tissue in my lungs has pressed into the cord, causing it to stretch. It can temporarily be fixed prior to transplant by injecting collagen into the vocal cord. It's imperative that nothing be aspirated into new lungs, so if there is a way to make things work better before surgery, it will be done.

There are also several classes that my caregivers and I still need to attend. Those are a bit of a scheduling challenge, but we're working it out. Knowing all the things that might happen can be overwhelming, but it's better than being blindsided. The classes also make you realize that you're not alone in your doubts and fears.

So those are a couple of the obstacles I'm immediately facing. I hope there won't be many more. Every clinic appointment brings a little hope and a little more worry. It's difficult to keep my balance sometimes, but having the support and love of so many wonderful friends helps tremendously. I thank you all for every thought, word and prayer, and of course for your generosity here, Helping Hope to Live. Thank you.