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.
Friday, November 11, 2011
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.
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.
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