Friday, November 11, 2011

Same as it never was

My apologies for being slack lately...hopefully this will make up for lost time.

Lee had two important doc appts this week. One with his new Pulmonologist, Dr Gries, and the other with his GI specialist Dr Jobe. We loved Lee's Pulmonologist at Duke, he was great. So we have high expectations. Let's hope she delivers something other than the baby she is carrying.

Dr. Gries thinks he'll be transplanted before January. But like she said, and we've heard countless times before, no one knows for sure. Great. Just great. An answer but not really an answer. All par for the course in transplantland.

The worst part about the transplant for Lee is the dreaded feeding tube. It's been an issue for him from day one. In fact, he almost decided against getting a transplant because of it.
Dr. Gries says that for him, he will more than likely be on a feeding tube for 2-4 months after the transplant. But maybe longer. Maybe for life. LIFE!? Ugh. Not what Lee wanted to hear. I told him he should eat whatever the hell he wants and however much he wants from now on.

More unknowns. Fabulous.

Turns out that there are now 2 people in "competition" with Lee for lungs. There are hundreds waiting, but only 2 others that have the same blood type, chest size, and lung allocation score. So instead of making one person mysteriously disappear, I have two. Got my work cut out for me.

If the waiting and the feeding tube issue aren't bad enough, let me add another crappy factor to this equation. His lame esophagus. It needs fixin'. And the way they intend to do that is with a second surgery called a Fundoplication. Here's the kicker, not sure how long after the transplant he can get this done. Originally, we heard 6 weeks. But now, after his appt with the GI specialist, they are saying anywhere from 6 weeks to 6 months!!!

More vagueness. Awesome.

Gee Leslie, got any good news? Oh yeah, kind of. Lee has been advised to take less Prednisone. The good news is he will now sleep a little better. The bad news, he feels worse and has less energy.

Ummm, sorry guess that wasn't all that good after all.

I'd love to report that we've completely settled in, that we're doing great. But the truth is, we're just ok. Although Lee seems to be handling everything much better than me. It's been tough, I won't lie to you. We can't seem to find a routine. Yet. And we both miss our furry companions something terrible. Mom is taking great care of the cats and Turtle and Waylon are making Stella feel right at home. But we can't help but wish the critters were here with us snuggling and purring and talking.

But no need to worry, everything will be alright. We've got friends coming to visit next week. And before you know it, Thanksgiving will be here and we'll be stuffing our faces with turkey.

Tuesday, November 1, 2011

We.are.family....house

It's been exactly one week since we landed on planet Family House. And wow, what a week it has been! A long ass drive to get here, a few hours of alone time at Phipps Conservatory, wheelin' Lee around gems and dinosaurs, an exciting Friday night trip to the ER, a beautiful Saturday snowfall, an annoying UTI for me, several residents giving us the stink eye, weird Halloween, and an afternoon at the Zoo. And that was just the first week! No wonder I'm so tired.

Let me rewind a bit and explain a thing or two. Places like Family House or an extended stay hotel close to the hospital are emotionally good for people like Lee. They get to meet others in the same or similar situations. We've already talked with a handful of people here like this young fella who got a bowel transplant. I didn't even know that could be done! There are 3 or 4 residents waiting for a lung transplant. One older guy has been waiting 5 months but he's 73 and has several other serious issues that make him high risk. A young petite gal needs a liver and both lungs. I remember her from the evaluation week in August. Then there is this young Asian dude. We don't know his story, haven't talked with him yet. He could be Lee's competition. If so, he's small and doesn't speak a great deal of English so I'm pretty sure I could "accidentally" make him "mysteriously" disappear. He's here with 2 caregivers. They are always down in the kitchen cooking up fabulous looking meals. Lee keeps joking about how we should try to befriend those folks. And quick!

Things have gotten better around here. For the last few days, I've been able to park onsite in one of the handicapped spaces. And some of those weenie residents here are well, still weenies but a few of them have warmed up a bit. I will say that Sunday when I was feeling my worst, I HATED having to get dressed and go downstairs to eat. We can't wear pajamas in the communal areas, they must be "street clothes." That sucks. So I bought a pair of lounge pants at Target yesterday with the word LOVE on my butt. I know what you're thinking. LOVE? Really? Look, there wasn't much to pick from and compared to some of the outfits I've seen here, I'll look fashionable. I also bought a nice fluffy pillow and a faux fur throw since the blankets on the beds are paper thin. We've also snuck in snacks but all meals are prepared in the kitchen and eaten in the dining room. So for me, not being able to cook and eat in our room is still annoying.

For those of you who don't know me or don't know me well, there's something you should know. I love to point out the obvious and often say things that get me into trouble. I'm terribly sarcastic and TRY to be funny but we all know often I can fail at that. So if you read my blog where I was bitching and moaning about Family House, don't be alarmed, I'll live. I'll adapt. This experience is not about me anyway.

Thursday, October 27, 2011

Just the facts ma'am

After waiting almost 2 days, our transplant coordinator FINALLY called today. He had a bunch to tell us. Thought I would share.

Lee is now active on the lung transplant list. Turns out Lee is pretty high on the list too. He's basically "in competition" with one other guy for new lungs. Kind of makes me want to find this guy and throw him down a flight of stairs. Too mean? Sorry, I can get competitive sometimes.

Anyway, Paul our transplant coordinator, told Lee he shouldn't have to wait too long. Within 3 months, but probably sooner.

We could get "the call" at any time, day or night. So we ask that unless it's an emergency, please do not call or text Lee. Want to keep the line open. When we do get the call, it's up to me to get him to the hospital, which luckily is just a few blocks away. ( one of the perks of being so close to the hospital ) Once we arrive, Lee will be whisked away for prep. That will take about 4 to 5 hours. During that time, I can hang out with him. I plan to take embarrassing photos of him. Then post them on Facebook! Or not.

False alarms are common. So don't be surprised if I tell you he's going in for surgery only to tell you later that the lungs couldn't be used after all. It happens.
If it turns out not to be a false alarm, then the surgery itself will take about 8 hours. While I wait, I'll post updates on Facebook and call our family and friends.

If all goes well after surgery, he'll stay in the hospital 3 to 4 weeks. We've heard that 6 weeks after the lung transplant, he'll then get the Fundoplication surgery on his esophagus. More time in the hospital. So all tolled, we'll be in Pittsburgh 2 to 3 months after the transplant. Again, if nothing goes wrong.

Lung transplants are the most difficult and dangerous transplants. And there is always the possibilty of rejection of the organs. Which is very common. Infections can pop up too. But we don't want infections. Simply put, they are bad.

Eric Idle and The Holy Grail

Come on everyone, sing along with me!

"Always look on the bright side of life...Always look on the light side of life...
If life seems jolly rotten
There's something you've forgotten
And that's to laugh and smile and dance and sing.
When you're feeling in the dumps
Don't be silly chumps
Just purse your lips and whistle - that's the thing
And always look on the bright side of life..."

Thanks Eric Idle. I needed that.

So......I've been trying, really trying, to look on the bright side of life. It's been a rocky start to our stay here in the big city of Pittsburgh. Lots of little things that add up to one big annoyance for me. Call me prissy, call me demanding, I know what I like and I know what I can put up with. A 9 minute walk to my car in 42 degrees and rain is NOT something I want to put up with every day. Especially now that winter is fast approaching. Plus there is no way Lee can walk that far. Yep, we can't park on the Family House premises. Have to use one of the hospital parking decks. So I talked with one of the staff here, explained the issue, and she told me we can use one of the handicapped spaces out front( we have a placard for the car )but they could be taken. Basically, it's a crap shoot. fabulous.

This place we're residing is odd. I guess it's really a hospitality house for the University of Pittsburgh Medical Center or UPMC. There are 4 near the hospital and this one used to be racket ball courts and lockers. The showers are what you might find in a gym. We got the "suite" at this location. Two rooms with two bathrooms. The bedrooms are sparely decorated with furniture that screams the 1970's. Lots of faux wood. And the rooms are quite small. I can't imagine if we only had one room. I would hang myself...in one of the creepy bathrooms. Oh yeah, we sleep in twin beds with pillows as flat as pancakes. Or hotcakes as they call them here.

The lobby, the communal kitchen, the laundry room and the fitness room ( 1 treadmill and a stairmaster....more like a fitness closet ) are on the 8th floor. If you're like me and value privacy, then this is NOT the place to stay. The staff and volunteers are all very nice and helpful but some of the residents are dicks. Some are not.

The only things here that are free are coffee and tickets to a few museums. Otherwise, we're going out for lunch and dinner every day. I just don't feel like cooking in the communal kitchen. yet.

Did I mention that it's 75$ a night and not 60$ as was advertised on their website? More expensive than I thought.

Alright, alright. Enough bitching. Let me point out something good, actually something great. We're here so Lee can get new lungs, The Holy Grail. That's really all that's important. We can learn to live with these small annoyances, I hope.

Tuesday, October 25, 2011

The sound of music

Our Sunday evening ended as it had began, with smiles and hugs and well wishes. The Lungs for Lee benefit show was simply wonderful. Our musician friends serenaded Lee and surrounded him with lyrical love. He couldn't have been happier. Well, maybe if he had new lungs.

For those of you who couldn't be there...we sold Lungs For Lee tees ( the one I was wearing had been bedazzled with rhinestones by yours truly ) gave out info on Pulmonary Fibrosis and organ donation and sold raffle tickets to win a fantastic guitar. Lee and I did our best to speak with as many people as we could. Lee would later describe it, "like being at your wedding and trying to talk with every one of your guests." And Lee was able to stay the entire time. Which was quite a feat. It was all the love and compassion and kindness that kept him going. But it did take him a solid 3 days to recover.

There was an odd element to the evening. One that bothered Lee a bit. The Blind Tiger was filled with people who had come out to support a man who needs new lungs to survive. Yet about a third of them were outside smoking. Smoking and lung disease, not a particularly good mix. He and I live a life filled with lung health do's and don'ts, mostly don'ts, so we couldn't help but be perplexed by it.

Smoking aside, the night was truly fantastic. Watching our friends on stage belting out songs all in the name of Lee was awesome. And Lee even made it onstage with Ronnie Levels and His Genius Band to sing a Big Star song, Thank You Friends. An obvious thank you to everyone for their support during this difficult time in his life.

Wednesday, October 12, 2011

Time flies

The clock is ticking. We've now got less than 2 weeks before the temporary relocation to Pittsburgh. I have a hundred and one things to do. Most of which only Lee or I can take care of. Otherwise, I'd be calling our friends and family to get the hell over here.

As I walked through the college campus to the radio station today, wearing my Star Trek The Next Generation tee and carrying my IPAD, I felt like a student again. For a brief moment, I felt young again. But then, just as quickly as that feeling had come, it left. And I giggled. After all, I was over 20 years older than the kids around me. And I was getting ready to talk about a great cause for a serious situation. It was a strange but wonderful moment. One I wished had lasted much longer.

For those of you who didn't get to listen to the shows, Turtle, Lonnie and I were promoting this weekends benefit concert for Lee. Of course, I also tried to throw in a little education about Pulmonary Fibrosis too. It bums me out that I won't be here to help spread the word on future benefits for Lee as I have no problem being on the radio or TV or whatever. I don't know a lot about a lot of subjects but Lee and Pulmonary Fibrosis I know.

Several people have asked about our housing situation and/or have suggested renting an apartment while we are in Pittsburgh. I gotta be honest, it would be more trouble than it's worth. We're only taking the bare necessities with us and would prefer spending a bit more money on safety, a shuttle service, close proximity to the hospital, free meals every now and then, a fitness room and a maid. Apartments can't give us those things. But Family House and Residence Inn can. Plus I just have WAY too much to worry about. Trying to make life easier.

Even though we'll be far from our home and living in hotels, we'll have family and friends visiting from time to time. My Mom is coming up sometime in Dec., and maybe a few friends for New Years. One of my oldest girlfriends lives in Philadelphia and is planning on at least 2 trips to see us. Time will fly by.

Tuesday, October 4, 2011

It's the final countdown

Well folks, it's official, we're leaving for our temporary move to Pittsburgh on October 25th. Just days before my favorite holiday, Halloween. To my friends, I'm sorry I won't be there to host my annual Halloween party. But I promise to make next years twice as fab!

We're driving up so we can have my car to get around the city when we want. And yes, we've got a place to stay. At least for awhile. We're staying at Family House. It's for people just like Lee and I, patients and their caregivers. People who are waiting for a transplant, or another specialized hospital treatment. And it's only 60$ a night. Believe me, that's the best we could find that fit our needs. The plan is to move to the Residence Inn after Lee gets the transplant. Of course, that could change. See, Family House is a great choice but there a few things about it we're not too keen on. Like we can't eat or drink in the rooms. They have a communal kitchen area where you dine. Maybe you're thinking, that's no big deal. But it is to us. There are MANY times Lee doesn't feel well and decides to either stay in bed or rest in the living room. You know how it is when you're not feeling good, you want privacy, and we'll have very little. But we know that our stay will be temporary and we know that it's the right the thing to do. Plus the price is reasonable.
The positives. Family House offers free shuttle service to the hospital. Which will definitely come in handy. Plus on site laundry facilities.

My Mom will house and pet sit for us while we are gone, however long that is. She's starting her house sitter training this week. Tons of things she needs to know before we leave. And until we leave I'll be cleaning and organizing the house. Some people "winterize" their homes, I'll be "housesitterizing" ours.

Here's the real sucky part, we won't be able to take any of our pets with us. We don't have children but we have furry companions. And they mean the world to us. It's going to be very difficult without them. All of them have wonderful little personalities. There will be less sunshine in my life while we are gone.

Perhaps you're asking, what are you going to do while you're waiting for "the call?" Well, Lee is taking his Nook with him. He FINALLY gets to use it! Plus he's looking into buying an IPOD so he can listen to music, which is something he does every day, many times a day. I am planning on possibly taking an ice skating lesson or two. Something I've wanted to do since I was a little girl. Pittsburgh has an outdoor ice skating rink downtown. Supposedly bigger than Rockefeller Center. Pittsburgh also has a glass center. Might take a class or two there. Yep, for years I've wanted to learn how to create blown glass art. Every Summer for the past 8 or 10 years, I've tried to figure out how I could get accepted to and pay for a semester at Penland. (located in the NC mountains) But it was VERY expensive and you had to stay in a dorm for weeks or even months. Anyway, Pittsburgh offers 2 hour workshops. Less time and loads less cash. Plus there are several museums we can visit, a botanical garden, the national aviary, a zoo...we'll be fine.

Our hope is that friends and family will visit us. My Mom is already planning on flying up during Christmas. Crazy to think we'll be celebrating all the major holidays in a strange city. But you know, I'm kind of looking forward to the experience. It will be like a vacation, except that Lee has to undergo a MAJOR life altering surgery at some point. Let's call it "transplancation."