That's What Friends Are For!

For good times, for bad times...I'll be on your side forevermore...That's what friends are for...

Mom had a hard week last week. On Wednesday she had an attack during the short amount of time that she was left alone while Dad had to get something done outside the house. She had to get across the room to get a new tank of oxygen (when she walks, she has to switch from a machine to a tank because the tank can deliever more oxygen at a time than the machine-she went through her tank much more quickly than expected on this day), and wasn't able to lift it (anyone got a good idea for a lighter oxygen tank...we could be millionaires!). She broke out in a cold sweat, and by the time she got the tank where it needed to be, her sweaty palms couldn't grip the dial enough to turn it on! She called Dad, who sent a neighbor over to help until he could arrive.

It took her much longer to recover from that episode than she would've liked, and she had to miss the 60th birthday party of one of her closest friends. By the time it rolled around on Saturday, she was too weak to take a shower, and Dad ended up calling the ambulance to come and take her to the ER to be evaluated as to whether Cleveland should send a plane to come and get her and put her on a heart/lung machine to await her transplant. At the ER it was determined that she wasn't as bad. Her meds were adjusted and they were sent home. By Sunday, she felt a lot better.

But before she left the ER, she was surprised by her friends who were all at the party! Dale, the hostess, had been in contact with Dad, and after celebrating Dee's 60th for a while at the house, the whole crew packed up a couple of plates of food and trucked it down to Lexington Medical Center where they went in 2 by 2 to see Mom and Dad! While it was an awesome act, I really wasn't surprised when I heard what happened.

Mom & Dad have been in the same group of friends for close to 30 years. Most of the gang lived in our cul-de-sac when we moved to SC back in 1982. Others have been added to the group through one person or another. The tight-knit clan has seen many ups and downs...divorce and the death of loved ones, celebrations of marriage and grandbabies, graduations and promotions...through thick and thin they have always been together. We are so thankful to have this "family" in our lives, especially when tough times come along.

All I Want For Christmas...

It's getting to be that time...time to start planning how we are going to spend the holidays. Things get sticky when you get married and have to split time between the two families-especially when there are grandkids involved.

We have found that since we've been married, we've been more apt to give the creme de la creme time to my parents, and have often times had to fit in Brandon's family when we could. This is for obvious reasons, but in case you're not into the obvious, I'll spell it out for you...every holiday we think, "well, this could be our last..."

Our first Christmas together as a married couple, Brandon and I spent at MUSC. I remember wanting so badly to carry on our family tradition of going out to lunch on Christmas Eve. Since Mom was in the hospital, that obviously wasn't possible. But Brandon and I went throughout downtown Charleston (not a bad place to be, if you've got to be visiting a hospital) and got takeout from various favorite restaurants. We brought it back, put some white sheets over a rolling tray and had a spread that I still remember tasted and looked so good...right there in her room. Then Brandon pulled out his violin and played Christmas carols for Mom and all the nurses and anyone else who was confined to a hospital bed. I remember waking up in my best friend's parents' house and being with them as they opened gifts, then going over to visit mom in her hospital room. It was very strange, but very sweet. It was the first year that we didn't really have presents to open or a tree to sit around, but we realized how blessed we were to just have each other.

During our second Christmas together, I remember being at Mom and Dad's on Christmas Eve. No lunch, no takeout, but Mom did manage to cook that year. I remember her wanting to pray that night before we opened our gifts. It was a precious prayer that I will never forget...we were all so thankful to be together, so thankful for the new life that was growing inside of my womb at the time, so thankful for our relationships with Jesus.

During our third Christmas together, Ella was only a few months old. Mom and Dad were living in NC, and Mom was in the Duke program. We tried to go out to our Christmas Eve lunch, but chose a horrible restaurant. Mom started not feeling well, and by that evening Dad had to take her to the ER at Duke where she was admitted. Brandon and I stayed at their apartment and read Cosmic Christmas to some family members before turning in. In the morning, we packed up our stuff, drove to the hospital and sat with Mom and Dad as Ella cooed at them in her little Santa hat and Christmas pjs.

Last year was our 4th Christmas together. Christmas Eve lunch was spent out again at Macaroni Grille. The cool story about that outing was that Brandon and I offered to pay because we had redeemed CC points for a gift certificate...only problem was that it hadn't come in yet! So we were waiting all week for it. Mom and Dad drove to Greenville to spend the night with us and we were literally getting in the car to go to lunch when the mailman arrived and delivered our gift certificate! Woohoo! We had an awesome meal together, and Mom and Dad got to watch Ella tear into gifts around our huge Christmas tree. It was a very special holiday for all of us.

So...this will be our 5th Christmas together, and Mom's 5th Christmas with Pulmonary Hypertension. Allie has joined our family and will experience Christmas for the first time. Ella will be really into it, I'm sure.

We are always thankful for each passing year we have together, but they seem to be ever sweeter when we understand the possiblity that each may be our last. We hold each moment tightly and cherish each memory. This Christmas would be a great time to celebrate Mom's recovery with a new pair of lungs! That's all I want for Christmas...

A special thanks to the Berry family for your understanding hearts and attitudes. The grace you've bestowed on us during these tough times has been outstanding, especially around the holidays when our travel plans have usually been centered around Mom and Dad's whereabouts and conditions.

Fundraising

Well...I admit, we're getting a late start on this. I don't know what kept us from getting going on raising funds for Mom's transplant, but whatever it was...we finally got with the program. Or...we're getting with the program.

We are considering partnering with the National Transplant Assistance Fund to help us raise funds to pay for transplant-related expenses that are not covered by Mom's insurance.

Please stay posted to find out how you can help!

A Real Catch

My friend from Furman, Megan Carson, wrote a book about going on blind dates and finding "the One". I have enjoyed getting on her website (http://www.megancarson.com/) and reading her blog posts. Today I came across an article that she found in the Boston Globe, written by a breast cancer doctor.

http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/will_he_hold_your_purse/


If you don't want to read the whole article, the gist of it is that there is a misconception among many young singles who are looking for lifelong partners...they think they want partners to romance them with sunset walks on beaches and French food. But what the author is pointing out is that the REAL CATCH is someone who will hold his wife's purse as she gets radiation treatment for breast cancer. I inserted my parent's situation with Pulmonary Hypertension in for her references to Cancer and this is what I came up with:


WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with bad news, and who will keep his cell phone close at all times waiting for "the call". A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 90-10, and that’s OK, even when the 90-10 phase goes on and on. A man who truly doesn’t care what somebody looks like after battling PH for 4 years, in and out of ICU, and with a permanent port sticking in her chest, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “Pulmonary Hypertension death sentence” in a Google search. And, most of all, a partner who will sit in a transplant clinic waiting room and hold hard onto the purse on his lap.

Daddy, you are a REAL CATCH, and Mom's a very blessed woman to have caught you.

The E & A Fix

Mom and Dad affectionately say they need an "E & A fix". That's Ella and Allie, their precious grandbabies who live about an hour and a half away. And then they say, "and of course we want to see you and Brandon, too!" Riiiiight! I know where I stand now! Ha ha! :)

Brandon and I decided to pack up the car and the kids and trek down there. We arrived Friday at lunchtime and had a wonderful visit. Allie has just cut two teeth and is beginning to crawl. Tomorrow she will be 6 months old. Ella is into everything, and was a total angel the whole time we were there.

We had some good talks, some difficult talks, some great weather, some great food, and a lot of fun. There are a lot of topics of conversation that I honestly never thought I'd have to engage in at such a young age concerning tying up loose ends "just in case". Mom has always liked to be prepared, and I'm glad for it.

Most of our time was just spent in each other's company. It is a precious commodity that I don't take for granted anymore.

Cleveland Trip September 2009

Mom and Dad went to Cleveland the last week in September to meet with her transplant team. Honestly, they told her they were surprised to see her again because she was so sick the last time she was there two months ago. (They go every two months for check ups while she waits for a matching new pair of lungs to become available.) At that last appointment she was given very grim news, but just like every other prognosis report, she has outlived it and surprised the doctors in doing so. I wonder why they keep giving her timelines?

So, the doctors said that everything is being done to find a match, but unfortunately they have already performed 124 transplants since she has been #1 on the list (that means that each available pair goes through her grid first to see if it's a match and if not, it goes through the #2 person's grid, and so on).

That's a lot of lungs.

Mom's issues have to do with size and her antibodies in her blood. She has a very high amount of antibodies, so a qualifiying pair of lungs will have to come from someone who has a low amount so that they do not fight, and her body doesn't reject them. We knew going into this that there was a small percentage chance that she would have a match come available. But barring a miracle, it's our only chance, so we're taking it!

Anyway, the rest of the trip went quickly and uneventfully. She didn't get admitted to the hospital this time, so we were all thankful. On their way home, Mom and Dad got to stop in Greensboro to visit Leslie & Keith, and Karen & Dennis. These are Dad's cousins (Keith and Karen). Leslie is battling against cancer, so they wanted to go and encourage her in her time of need.

Battling PH

Cris Malseed is battling Pulmonary Hypertension. Stay tuned for updates.