Posted on August 6, 2013
Posted on August 6, 2013For 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!
Posted on April 25, 2013
Posted on April 25, 2013Yesterday 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!
Posted on March 29, 2013
Posted on March 29, 2013Kelly 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