A Propensity for Stemware

If you know me, you know how much I loved wine. I loved everything about it--the color, the smell, the taste, the glass from which it's sipped. And I loved the funny wine posts you've shared on my facebook timeline. My favorite:


Wife--I adore you. You mean the world to me. I can't imagine how I could ever live without you.

Husband--Is that you, or the wine talking?

Wife--It's me talking to the wine.


Alas, the love affair is over. I've had to give up many things because of my poorly performing lungs. Now, in order to get new ones, I must give up wine. Alcohol. I just turned my back and walked way one Saturday in February, and I've never looked back. It's as I've always insisted--"It's not that I need wine. I just like it."

I used to like it every day, in fact--sometimes twice. When the psychologist at Duke asked me during my evaluation how many days in the last month I had not had wine, my answer was "Less than one."

But I dumped it. It was a sacrifice, yes, but one worth making. The anti-rejection drugs I will be taking after transplant will be harmful to my liver, and they aren't going to need any help from alcohol. I understand, and Wine understands. It was an amicable parting.

But it turns out that Ido have a drinking problem...

The other day I found myself explaining what's so special about a wineglass to the same psychologist who caused my breakup. Just the sight of one of those fragile, elegant beauties signifies that it's time to let go of the day's troubles, to breathe deeply, sip and relax. She was concerned that I had replaced wine with "dealcoholized" wine--wine from which the alcohol has been removed by a special cone spinning process. But she was even more concerned when I assured her that I would quit that too--that I'd be happy to sip ginger ale or Ensure (see photo above) from my wine glass. She doesn't get it. I understand; she's young. But I don't see how my choice of glassware is a problem. I feel like my back is against the wall right now, but I don't think I'm going to let this one go. I will happily follow all the rules and regulations, all the dietary restrictions, all the exercise guidelines. I will take every single pill at the exactly prescribed time for the rest of my life. But I feel that I have to stand up for my right to choose my own glass!

Please vote for the wine glass!

Thank you!

Dancing Without Oxygen

I was recently reminded of this picture when my daughter shared her memory of "The Night My Mom Gave Me a Fat Lip While Swing Dancing." It happened in 1999. We were learning, and I must have missed something, because somehow my elbow connected with her lip, and all of a sudden, the party was over. Even though I begged her not to cry, one look at her poor battered mouth and I knew I wasn't going to be swinging her around the dance floor anymore that night. All I could do was go home and preserve the memory by making it into a cartoon. But I digress. This is really about my goals for after my lung transplant...which may or may not include further swing dancing lessons...


I want to dance without oxygen,

To breathe without thinking.


I want to fill my lungs with the air around me

And hold it in as long as I can.


I want to run, carrying only my own weight,

To synch my breaths with my footfalls on the pavement.


I want to say my words as loudly or as softly as I choose,

Without coughing and choking on them.


I want to walk through my house, unencumbered by breathing tubes,

And not get tangled up in the furniture.


I want to climb all the stairs without stopping to rest,

And to walk past beds and chairs without feeling an urge to recline.


I want to clean my house--all of it--and consider it a day's work,

Rather than a lick and a promise that I know will never be fulfilled.


I want to say "Yes, let's go!"

And not think about how much oxygen I will need.


I want to open the door and step outside,

And not be yanked back by a tube in my nose.


One goal, one wish, one expectation.

If I can have this, it will be worth everything else that comes with it.


I am ready for my new life,

Whatever it may be.

Responsibility

Over the past few days, many of you have kindly shared a fundraising link for My Awesome Husband Greg and me. With the outpouring of love, prayers and support we have already received--including rides back and forth to rehab for me, it was difficult to ask for more. However, Duke wants to see that a genuine effort has been made to raise money before they will place me on the transplant list. The costs associated with the surgery and the necessary relocation to Durham afterwards are overwhelming, even with good insurance. I'm sure we're not the only family that has needed help. Still, I hated to ask.

On Thursday, I met with two surgeons--one who procures the organs, and one who transplants. Both of them were able to answer questions I didn't even know I'd asked. From them, I learned why this fundraising is so important. No, it's not just because Duke wants to be sure they get paid. To them, it is a very serious responsibility.

When Duke receives a gift of lungs from a family who has just lost a loved one, they have a responsibility to that family to be certain that the person receiving the lungs will give them the best possible care. They also have a responsibility to the person who is next on the list, who won't be getting those lungs. Unfortunately, if the recipient is unable to afford the costly drugs that are vitally necessary to prevent rejection, then the lungs will fail. They will have been wasted. A sobering thought, but it made me understand why Duke is so insistent on making sure that the money is there to pay for those drugs--especially that first year.

So if you have been able to contribute to Help Hope Live financially, Greg and I are extremely grateful. We are just as grateful for every kind word and offer of prayers and positive thoughts, for every virtual hug that has come our way. This truly is a journey, and we know that we are not making it alone. We are so thankful for the blessings of family and friends in our lives.

https://helphopelive.org/campaign/12677

Dear Diary...

Dear Diary,

Today made me want to chuck my positive attitude and give up on imagining the outcome I desire. Today made me want to conjure up the worst that could possibly happen and just wallow in self-pity. Today was a day of discouraging words. Today was Duke Clinic day.

Oh, it wasn't all bad. The blood work-up and breathing tests went smoothly enough. It took just two attempts to get a good blood gas from my rolling veins, and I only had to play the dreaded Keep Blowing game three times. The best part was that I didn't have to perform the six-minute walk test. Best because the broken toe that happened on Duke Clinic day last week--the one where a nearly full oxygen canister slammed down on my left foot--still hurts like a son-of-a-bitch.

No, the discouraging words I heard came at the end of the day. They were uttered by Dr. Child Prodigy, who, judging from her apparent age--19-1/2--must be the newest member of the Transplant Team. As soon as she started speaking, I could tell she was smart. The kid knew what she was talking about. I had almost started to relax when I realized she was saying something about a delay in placing me on The List. Something about swallowing difficulties? The swallowing difficulties that I've been dealing with, diligently trying to exercise away, for two years? Those swallowing difficulties? Um, may I ask why this is coming up now? Yes, I realize that the paralyzed vocal cord is a new complication, but surely someone could have mentioned that those issues might be waving a red flag before now. Like maybe before I was subjected to all of those expensive--albeit really fun--medical tests. Before I put myself on the emotional roller coaster of having to decide if I even wanted a transplant. But you waited until now, when I've decided that I most definitely do want one--ASAP, please--before telling me I might have to wait even longer?

Diary, I'm afraid I might have lost it just a little bit then. But I didn't say any bad words, and she was really tough. I was the only one who cried. Then she told me she didn't want me to apologize. And then she apologized because she felt that perhaps she hadn't chosen her words very well. We were then free to move onto the next disheartening bit of information she had to share with me--antibodies.

Antibodies are something that I have also known about for a while. I have a lot of them...blah, blah, blah...make it harder to find a match...blah, blah, blah. And today I learned that the ones I have are mostly not the good kind...blah, blah, blah...bad performers...blah, blah, blah.

I guess what I'm trying to say, Diary, is that today kind of sucked. But you know what? Now that we've talked, I feel a little better. I have one more clinic day this week. I'm going to try to get back to my guided imagery happy place before then. Today was just a little bump in the road. I probably let things swell out proportion--like my damned foot. You know what--never mind. This is all going to work out. I can hear Missy now..."Don't worry, silly. It's going to be all right."

Thanks, Diary. I needed that.