Running up that hill

Most of you read my daily updates on Facebook, at least I think you do, which I certainly appreciate. But I don't know if you're getting the full picture. The life-after-transplant-but-still-in-Pittsburgh picture. So I thought it was time to dig a little deeper and show you the seedier side of posttransplantland.

The life of a post transplant patient is not an easy one, especially since it's been less than two months since the surgery. The life of a caregiver is not an easy one either. We both stay busy.

Busy? YES. And I'm not talking about going to museums and seeing the sights kind of busy either.

For Lee, he is required to do exercises. Not just his breathing and swallowing exercises but he needs to move. Walk, walk and walk. He shouldn't sit or lay around too much. Now when he takes long walks, he does get tired and must sit down to rest often but he's out there doing what he's gotta do. And never you worry, he takes all the necessary precautions to stay germ free. He wears a mask and doesn't touch too many things, like doorknobs or handrails. They're gross.

For me, my main focus is still caregiving. Just different than before the transplant. I administer his meds twice a day twelve hours apart. I also give him a daily insulin injection. (I know, me with a needle!) He gets a 1 ounce dose of protein once a day too. Right now, he is taking 12 different medications. 4 of which must be refridgerated. (everything from a blood thinner to a pain med to an anti fungal to an anti rejection med) So we had a small fridge put in our room. All of the meds must be either crushed or measured precisely then mixed together to be given through his feeding tube. The tube is actually separated into two smaller tubes, one for liquid nutrition and the other for meds.
Lee is still not eating or drinking anything. He is allowed to suck on Dum Dums per the Speach docs orders and he sucks on ice but that's it. It's brutal.
His liquid nutrition comes in the form of 8 ounce cans. It's contiuously pumping a bland, beige colored, no flavored goo into his belly. Currently he uses between 8 to 9 cans during a 24 hour period. We have one of those coat rack looking doo hickies to suspend the bag on and it must be completely changed every 24 hours. Sexy isn't it?

Then there's the laundry (which I can NEVER catch up with ) cleaning (our rooms, which again I always seem to fall behind on) grocery shopping for me, cooking, washing dishes, picking up meds, calling docs, taking Lee to various appointments. Plus I must thouroughly clean all the measuring cups, mixing cups, syringes, and tablet crusher after each use. Whew. I got tired just typing all that.

As I've mentioned before, being an organ recipient isn't like most other post surgery lives. The patients, as well as the caregivers, have to change their ways of thinking. Even change habits. And jobs. And hobbies.

If Lee gets to feeling well enough to work again, he can't be a teacher or a nurse or work in any field that might compromise his health. Remember, he will be on immunosuppressant medications for the rest of this life. It sucks but it's all for a good reason.

Once we get home, Lee can't cut the grass or rake leaves, due to to Aspergillus. Kind of thinking he can't go into our basement ever again. For those of you who have never been in our basement, it's kind of scarey. We desperately need to improve the drainage down there. Have a little water damage. 'nuff said. And once he's back to eating and drinking, he shouldn't drink from water fountains, because of the stagnant water and bacteria issue. And food bummer, he can no longer eat grapefruit, because it can alter the affects of a few of his meds.

And being around sick people, forget about it. That's a biggie. If you want to hang out with Lee but are sick, stay away. Period. If you believe you MIGHT be sick, then don't even think about getting near Lee.
Another biggie, smokers. If you want to hang out with Lee, you can't smoke around him. Not even in our backyard. He has what the doctors refer to as "baby lungs". They are in the early stages of being used by Lee, they haven't reached their full potential. So we gotta take extra special good care of them.

Based on what the doctors and home health care nurses have told us, the lungs probably came from a young person. Possibly a teenager or person in their twenties. So we're going to treat them with the utmost respect. And you should too.

There are a ton of other restrictions and guidelines but I don't want to bore you. I'm sure I do that enough already.

It takes a strong person to adjust mentally to the restrictions. Thankfully Lee fits the bill. However, don't be fooled. He has moments, sometimes hours or afternoons when he gets frustrated or even depressed. His mind wants to do more, his body is not yet ready. And he desperately wants to go home. Me too.
And as a caregiver, I have my worries, my concerns, my stress. Not just about Lee but about all my responsibilities. I do my best to keep my chin up. I look for cool places to visit. But at the end of the day, it can still be very tough. Don't get me wrong. I really like Pittsburgh. My love of big cities comes from growing up in one. The museums and culture and of course the international cuisine. But shit, I gotta get a job. And I miss my cats.

Then there is the constant negative energy here at Family House. It's no ones fault. The patients are sick and their caregivers are stressed. Everyone wants to talk about their why they are here, which is good because we've learned a great deal from others. We recently met a lady who had a double hand transplant.(A DOUBLE HAND TRANSPLANT!) And luckily we've met some wonderful people here. My hope is that we stay in touch with them long after we leave.

But sometimes we HAVE to get the hell outta here. We have to go outside and smell the roses. So those posts and photos of Lee and I trolling the city for exciting and neat places...those few moments are our escape. We can pretend, sort of, that we're here on vacation just hanging out. I'd love to tell you that we're having a blast up here in Pittsburgh but that's really not the case. We're just trying to make the best of an unusual sitution.

The road to wellness for Lee is a long one. It takes anywhere from 6 months to a year for the new lungs to reach their full potential and for the body to heal. He may face lung infections and maybe a rejection or two along the way but that's just par for the course.