Monday, May 31, 2010

Thoughts from Mom: "Passions, Stress, and Friday Dinner"

Passions:
"If you asked me what my passions are, I would easily say my family and tennis...

Ed and I have been married for 41 years and he and out 2 children are the loves of my life. Like most families, we celebrate holidays, birthdays, and as many other occasions together as we can. We almost always spend at least 1 week together at the lake house on Smith Mountain Lake in Virginia. What wonderful memories we have made there over the years - swimming, boating, rafting, playing cards, relaxing, reading, working, and always laughing. Oh, and i cant forget....finding 4 leaf clovers! (I have found 11 over the past two days, a good sign i am sure!)

As for tennis, I played with my very best friend, Hallie, when we were young, even winning a trophy from a city park competition. I picked it up again when we moved to PA and introduced Ashley to it. Upon moving back to Atlanta, the whole family played with tennis friends becoming best friends - In Neely Farm and then at Deaton Creek, as well as Ashley's neighborhood tennis team. How lucky can I be to play tennis with our daughter even though she is much better then I am. BUT, she never gets mad at me....well, at least she doesn't verbalize it! LOL! Her friends are my friends, and I feel lucky to know them. I hope my passion for tennis will help pull me through the recovery. That will be awesome to play again, I am certain of that! and I look forward to it in the future. Will Ashley's liver portion make me a better tennis player?? Time will tell. "

Stress:
"I can not even begin to realize the stress Ed will be going through having a daughter and a wife in long surgeries at the same time. I do not feel stressed as we sit here 3 days away. Ashley says she is not stressed about the surgery, and i don't believe she is. But maybe any stress that may be weighing on her about the surgery is small compared to the other things that have occurred during the year. Through out everything, she has remained steadfast in wanting to continue with "The Plan", though i have repeatedly said she could back out at any time and things would be fine. We would just take a different path. As we move forward to June 3rd, I feel like we are prepared.

Friday Dinner:
Friday, May 28th, Ed and I had dinner with Bill Varner, his lovely wife Catherine, Alison Baker, and her delightfully funny husband Kurt. I first met Bill - a liver transplant recipient - through his journal [ http://www.billsjournal.com/ ]. I was intrigued because he had the same disease that i have (PSC). I became fascinated with every aspect of his story - How Alison became his donor; his live before surgery, and now after. Even more interesting is that he lives in Lynchburg, VA just an hour from the lake house! What a golden opportunity for us to meet he and his wife (who incidentally grew up in Atlanta) and his beautiful donor and her husband! Bill was transplanted in late February 2010 and both he and Alison are doing wonderfully. They shared with us their experiences and were so positive about how well Ashley and I would do. Both Ed and I appreciate and cherish out time with them, sharing experiences both before and after surgeries. We will always consider them very special friends and I know we can call upon them at any time and they will be there for us, just as i hope we can do for others down the road. Many thanks Bill, Catherine, Alison, and Kurt!

Thank you to everyone for your thoughts and prayers in the coming days and weeks. We can all feel so loved! "

Thursday, May 27, 2010

From Ashley...

"Our mother never really told us she had a liver problem. She just took some medicine, and we didn’t know what it was for. She was SO strong through her colon cancer…and every other health issue she has had.

I look at her, and I say, “She’s sick??” She plays tennis several times per week (I am lucky to be her partner on one of her teams!); and she is always on the go. But, I see little hints here and there of her illness. Sometimes she is tired. Sometimes she “forgets” things. Her skin is more itchy now. She has lost a good bit of weight. But, she is THE strongest woman I know. Selfless

I’ll start with December 2009…

In December, my wonderful friend Jenny went with me to Virginia to get tested to be a donor. We drove up to Charlottesville happily singing along to our ipods. We stayed at the English Inn. In typical Jenny and Ashley fashion, we had to stifle our laughs when the nice man bragged about his “101 items on the breakfast menu, and let’s not forget our lovely cookies at 5:00!”

The weekend included many doctors appointments, tons of blood work, a psychologist and social worker visit, and an MRI. Jenny will be an awesome advocate this summer, and she proved it when we got to the MRI appointment. Once we found out that we would have to wait over an hour past our appointment time, Jenny bounded up to the desk and announced, “Um, Ashley has not eaten since 7:00 am, and it’s now 4:30 pm. Ashley had to fast, therefore I fasted. We are hungry. What can you do to help us get this MRI and chest x-ray done sooner?” (Don’t mess with a hungry Jenny or Ashley). About five minutes later, we were called back. J

I’m extremely claustrophobic, so the MRI was certainly an experience. In typical Ashley fashion I just assumed it would last about 10 minutes. Instead, it included some dye injection, drinking some sort of gel stuff, and 45 minutes in the tube. All was fine once we were at Miller’s for dinner….a bar where Dave Matthews used to sing….

The next morning, we met with the transplant doctors and nurses at UVA. They were so helpful and informative. We left full of knowledge and were happy to see that these people were “cool like us.”

That day, we drove back to the lake house for some sushi, drinks, and an awesome night sitting out on the screen porch….well, it MAY have been about 20 degrees, but it seemed 70 degrees with our matching zebra print Snuggies and good drinks.

Fast forward to this week: I’m thankful my mother will have her best friend since 4th grade there in Charlotesville during the surgery. Jenny, my dear friend since 6th grade will be my advocate. Full circle.

Thank you to my family and friends for supporting us during this time. We appreciate it more than you know. "

Tuesday, May 25, 2010

Mom's Story

Quoted from Martha her self....

"I was diagnosed with Primary Sclerosing Cholangitis (PSC) in 1992. I had been diagnosed with ulcerative colitis when I was in collage and managed it, I thought pretty well throughout the years…sometimes on medication and sometimes not. I was cared for very well by the doctors I had and was happy with that. The ulcerative colitis over the years caused me to get colon cancer, in which I was diagnosed with in late 1994. In early 1995 I had my colon removed and had a colostomy for short period of time. Then I had a “reversal” where I would have no outside “bag” as they say. I always knew colon cancer was a possibility, but until you get the diagnosis, it never really seems real. That is the way it was for me with PSC. The doctor told me that is what I had, and this is what happens when you have it, and this is what we do to treat it and we will monitor it and you can live a long long time with it…maybe your whole life. But (there is the key word), there may come a time when you will need a liver transplant. Of course being the positive person I am – and continue to be – I never thought that I would need a liver transplant! Sort of like I never thought I would get colon cancer…knew there was a possibility but never thought I would get it! Wrong on two counts! Oh, in the mean time – late 2005 – I was diagnosed with gall bladder cancer – that was a very very lucky break (if you can ever say that about any of this!) From time to time I struggled with blockages due to scar tissue from the colon surgery. This would cause complications and force me to go to the emergency room. They would give me some meds and it would pass…LOL! On one particular visit, the emergency room doctor seemed to think there was something else going on. He admitted me to the hospital where I had numerous tests…he thought I had gallbladder cancer…I saw my regular gastro doctor and, although he didn’t think I had cancer, he referred me to a surgeon who took the gall bladder out. Sure enough, they found the cancer – contained thank goodness! What a blessing that blockage was since gall bladder cancer is seldom diagnosed early enough, and thus usually it is not a good prognosis. I thank every day the doctor in the emergency room for just “thinking” that something else was going on... I could have been sent home once the blockage passed thinking everything was fine…he literally saved my life. "

"Now we are on a new pathway. I have known I was in need of a new liver for about 2 years now. Once it was determined, both of our dear children immediately volunteered to be a donor for me. ….A very difficult place for a mother to be, but both Ashley and Bryan were very insistent and the doctors said this was a good choice given the fact that I may never get sick enough for a transplant. In addition, because I have a higher than normal risk for bile duct cancer, it made even better sense. Our daughter, Ashley will be the donor for me and we have been able to work around her schedule so it seems to be working out. "

"Because Piedmont Hospital , where my wonderful primary doctors are, does not do living donor liver transplants, we ended up at UVA Transplant Center . My doctor here knows one of the doctors there, we have a lake house in VA and my best friend lives in Charlottesville . So except for the fact that we will be away for an extended time, things have meshed together quite well. The support of my family and friends – especially my dear husband – has been so wonderful. I was sure Ed would become frustrated at my obsessiveness at researching everything I could about what is about to happen, but he was patient and understands that knowledge is power. "

"I am ever thankful for our wonderful son, Bryan, for his quiet caring and keeping everyone updated on our journey..for being a real support to Ed and Ashley and for always being there in our time of need."

"So here we are a little over a week away…looking forward to getting it behind us so we can get on with our lives!"



Monday, May 24, 2010

Less Than 2 Weeks Away


As most of you may know, Martha and Ashley (my mother and sister) are about to go under the knife to receive and give the gift of life. I have created this blog site to keep family and friends informed of the days approaching surgery and beyond. I will also use this as a journal to document the procedure along the way so we may cherish the event for years to come. Who knows, maybe Life Time will want to make a movie about Martha and Ashley's story. We already know its an amazing one.


If you wish to "Follow" this blog, you can do so by clicking on the link to the right. You will be notified when it is updated with new content. In the coming days i plan to write up a brief description of what PSC is, how it effects the liver, as well as some statistics about the state of our liver donor program. Stay Tuned!