For those of you who do not already know, I am HOME! After nearly eight months, 208 days of that in Texas, I am finally back home with my family in Charleston. What a happy ending to this leg of the journey!
I will continue to see Dr. Valentine monthly. At some point, the appointments will become less frequent. I have now passed my six month mark and am doing extremely well. I believe Dr. Valentine's final words at my appointment last week were "you're perfect!" Wow, not something I hear too often.
The contributions you all made carried us, almost to the penny, through my time in Texas. Apartment and furniture rental and air travel for Kyle and Bella were our main expenses. Without your help, we would have suffered a major financial blow. So, one more time, please accept our most sincere thanks! You will forever be in our hearts!
Yesterday was 90 days post transplant! The three month mark is a milestone as that early window is an extremely vulnerable time. Dr. Valentine is very pleased with my progress, though he will keep me on a short leash until the end of July, which will be the six month milestone. I am happy that he is granting me a one-week pass to visit home in June. I will be there for Bella's last week of elementary school as well as her gymnastics banquet. What great medicine that will be!
Meanwhile, I continue my rehab and clinic appointments. I have regained a lot of strength -- I can do push-ups and climb stairs -- and my lung function has steadily increased to 76% as of last Friday. CF patients often take up to a year to reach 100% or better. I am feeling good and am grateful for every breath!
Medical bills are rolling in. It looks like the drugs (about 30 prescritions filled monthly) and travel back and forth to TX will be our greatest lifelong costs. At the moment, your gifts are keeping a roof over my head, but soon we will likely direct some of the YouCaring funds towards medications. We remain deeply grateful to each of you for your love and generosity! You are part of a miracle!
Kelly received her successful double lung transplant on Januaty 24, 2013. It was a challenging surgery and Dr Valentine says that Kelly was the sickest person he has ever transplanted. At the time of transplant, Kelly's Lung Allocation Score (the score which decides where you are on the list) was 92 out of a highest possible 100. Most people I have talked to in the transplant community have never heard of a score that high.
Since the transplant, Kelly has had re-learn how to walk and talk. She was in bed and sedated for nearly 6 weeks, so she had extreme muscle atrophe. Talking was hard because the ventilator weakened her vocal chords to the point that she couldn't make noise.
We are now past two months out from transplant. Kelly's voice is quite a bit stronger, though not back completely. She can walk again, even without assistance of a walker. She has been able to climb stairs, but needs to be careful not to over-do-it. Her lung function at the first test in the hospital was about 48%. Since then, it has steadily been increasing. On the most recent Pulmonary Function Test, her lung function was at 67%. We are all amazed at her progress.
The journey is not over... Kelly will remain in Texas until August. Yes, that will be 8 months away from home by the time it's all said and done for. But, the finish line (returning home) gets closer every day.
Of course, the support of everyone in our extended community has helped us on this amazing journey. Thank you all for helping in so many ways. From the funds generated on this site (which have helped pay for our apartment and rental furniture) to those that have helped with cooked meals and dog walking and donated airplane tickets. We could not do this without the help from so many people. We continue to be overwhelmed by how much love and support we have received.
Thank you all for your help.
Kyle, Kelly and Bella
Kelly was officially listed on January 11th. She was de-activated for 2 days, due to a collapsed lung, to let her recover from surgery. Then, re-listed on January 12th. So, we have been waiting on the list for 9 days now. We have received a few offers, but they were either the wrong size or not in good enough shape. Kelly has been on ECMO for 13 days as I write this. We are practicing the fine art of waiting patiently, for something Kelly needs urgently.
Every day is filled with a roller coaster of emotions. I never know when I walk into the ICU in the morning whether we will be spending the day trying to trouble shoot some threatening issue that pops up. So, I try not to get too excited by either the ups or downs on this journey and try to take comfort in the quiet times.
Since you all have been so generous, I thought I would share how your money is being used. Currently, I have only used the funds from this fundraiser for paying for lodging. We are staying in a small vacation rental (vrbo) duplex that is about a mile from the hospital for $575 a week. Vacation rentals have everything we need for cooking, so that we can save money by not eating out. I hope to save as much as possible for housing after the transplant and antirejection drugs that she'll need to take for the rest of her life.
We will need to move to a furnished apartment in League City, TX after the transplant. That is where her clinic appointments will be for 3-6 months after transplant.
Again, thank you all for helping out. We couldn't do this without multiple levels of support... Financial, emotional, spiritual, and more that I probably don't realize yet.
When I last wrote an update, we were at Duke University Hospital waiting for approval to fly Kelly via medical jet to the Universit of Texas Medical Branch in Galveston, Texas. After an extremely stressful 3 hour flight, we are now in Galveston. Kelly has been on the ventilator for 8 days now, which means that flying was extremely risky. The air medics had to continuously monitor and adjust settings on the mobile ventilator. She had to be on the maximum level of oxygen just to keep her saturation rates at the bottom of acceptable levels.
When we arrived, I was reminded at how different Texas culture is from where we are from. Most of the docs wear cowboy boots under they're scrubs and the nurses all wear black scrubs that have stitching similar to black country western jeans. Kelly's Transplant Dr is Dr Vincent Valentine. So far, I am really impressed with the time he has spent getting to know who Kelly is. Of course, she can't speak for herself... So he spent close to an hour asking me all kinds of questions about who She was and what made her tick. They don't do anywhere near the volume of transplants that Duke does, so I feel more like I am working with a small business mentality where they have the time to really get to know their customers. Not that Duke didn't get to know Kelly, they all care very much for Kelly. But they just don't have the same time to spend on one patient.
UTMB is also offering very different techniques to prepare Kelly for transplant. Because surviving a transplant surgery requires a patient to go through physical conditioning, they prefer to not transplant someone who has been on a ventilator for a prolonged time. So, they are considering a technology called ECMO, which pulls blood out of the body, re-oxygenates it and removes CO2, then puts the blood back in the body. This should require much less work by her lungs and could allow them to remove the ventilator. Once off the ventilator, they could wake her up and allow her to do some level of exercise to prepare for transplant. We still have many obstacles to maneuver, but I am sure we are in the best place possible to give Kelly a shot.
I will try to post here as we have updates, but if you are interested in daily updates the facebook group is where you can keep up.
I continued to be overwhelmed by all the support, emotional and financial. Thank you all!
Thank you to everyone who has been involved in this effort. I can't express with words how much your support means to my family. The latest news is that Kelly has been accepted by the University of Texas Medical Branch in Galveston, TX. We are waiting for insurance approval for the medivac airplane flight. She has been sedated and on a ventilator since Saturday, 12/29/12. This is certainly a tough journey, but we remain positive and hopeful that we will make it to Galveston and get the love of my life the new lungs that she needs.
If any of you are interested in following daily updates, we have a facebook group at : https://www.facebook.com/groups/kellyshealthupdates/
This is a closed group, but I think you can request access and I can approve you.
Thank you again for your help.