Enough Lectures Already!

Things have been moving right along for me, but I know there's always the other side of the coin. In fact, it was pointed out by two separate people on the same day. Why does it always come in pairs for me? The other day I was doing my PFTs, and in between tests the RT (who I don't know very well compared to the others) launches into this huge lecture. He went on and on about how, now that I feel good I will go back home and hang out with sick people and catch colds and let my lung function drop and not think twice about it until suddenly I'm really sick and in rejection basically. He 'predicted' that in two years, I'll be back in the PFT lab with him having this same conversation, wishing I had taken better care of myself.

Are you serious??? I am trying not to think about this too much and get offended. He doesn't know me at all. That's apparent. I didn't go through a double lung transplant to NOT take care of myself. And being a well-trained, responsible CFer that takes good care of herself already, I am used to having a routine and making my health a priority. I think CFers (in general) differ from the other lung tx patients that way- it's already a way of life for us and not a brand new concept that we are learning to incorporate into our lives.

Later that day in the IV Room, I talked to another patient who had a double lung tx a few years ago and was in rejection. She also gave me the lecture saying I'd be feeling great, go back to work and hang around sick people and end up in rejection. Doom and gloom!

I have quickly realized that it's not easy to avoid people and their germs. No matter how far you try to stay away from people, they end up coming in closer. Personal space is a concept many people do not understand. I know everyone has gone to school or work or been in public sick. It shouldn't happen, but it does. Sometimes, people are contagious before they even realize they're sick. I know that avoiding germs won't be easy unless I stay at home... but that's no fun!!! I didn't go through this to live in a bubble!

It looks like cold season has officially started. Last week in the gym, there were three people in masks because they were sick. None of them were transplant patients. Which makes me wonder... why are you in the gym??? Sick support people should stay outside the gym. Sick staff should stay at home. We are all immuno-suppressed and it makes no sense why we should be put at risk like that. Again, it just proves that you have to look after yourself #1 because no one else will. Even when it's simple common sense.

-end of rant-

Having a Moment Here...

This afternoon it hit me. The whole dependence thing. I know I am so lucky to have an awesome husband that cares so much and other family members that are willing to help out. But it's still hard to ask for help. Usually I just get in a routine and don't think about it too much, but today it came to the forefront. I need someone to take me to clinic on Wednesday. Usually my husband goes to work super early on those days and then comes home to pick me up, we go to clinic, he drops me back off, and then he returns to work. He got a recent promotion (yay!) but that means there's more work to do! He's been so busy lately that I feel bad every time I need to take him away from work to help me. But I can't leave the house alone. It's too hard.

I've already been active on the list for over five months. Nobody believed it would take so long, and I think the waiting is getting to us. It means that quite a few family members have changed the way they live for me. No more vacations, no more leaving the house without a cell phone, and no more fun. Okay, maybe I'm exaggerating a bit! I appreciate it so much, but I feel bad that I just take, take, take. And I know when I get my transplant, I'll need them even more.

I know I'd do the same for one of them, but that doesn't help the current situation. I think the bottom line is that I'm ready for transplant already!

Ah, nothing like a little venting to make myself feel better. Now back to my usual cheery self!

IV Time

Last week was clearly smooth sailing compared to this week. I'm experiencing a bit of an obstacle this week. On Monday at lung transplant clinic I was put on IVs. It's not my usual routine, but I think it'll work. It's a combo of one IV med, Cipro, inhaled TOBI and extra Pulmozyme. At least I was able to be set up on home IVs, but it's all different. Different pumps, different rules and way less independence. A home care nurse had to come over today to change the first IV bag. Seriously. At least I am allowed to change the bag myself now, and home care only has to come on tubing change days. I have to go to the hospital to get my port needle changed because home care doesn't do that for whatever reason. If only it could all be done at the hospital since I'm already there every day, but they don't have a clinic like at home.

This week we have begun to work on my posture as well. I didn't think my back was that bad until I tried the first exercise. I couldn't do it. I was frustrated and shocked that I had lost so much flexibility. I tried an easier version of the exercise with more success. My physio also tried manipulating my back to relieve some of the pressure in my spine. It worked great. As the day went on I kept feeling better. I don't know how to describe it, except that I feel younger. The difference is amazing! I'm looking forward to working on my back more and correcting it as much as possible. I would love to see a ripple effect where a positive change in my spine allows my rib cage to expand more, leading to deeper breathing. That would be the ultimate result I could hope for!

Hello Frustration

Fresh out of the hospital, I am feeling better than I have in months. Even better than after home IVs in August. I have been trying to take advantage and get some things done around the house. I feel like I've accomplished so much already, and it IS a lot compared to my productivity over the last couple months. But realistically, it's hardly anything. Hello frustration.

Today I had a meltdown when my husband started doing the housework that I had been planning to do. Of course, I appreciate him helping me and letting me save my energy for other (more fun) things. But the frustration still hit me. These are things I want to do, but have a hard time doing. Yes, I know that getting out of doing chores should be celebrated... but I feel like I still need to have that sense of accomplishment when you finish a task. Those moments are happening less and less.

I think it's a control thing. I want to do what I want when I want. With a baseline lung function around 30% on a good day, that isn't always possible. I have to remind myself to take the help offered. I need to prioritize and make sure my effort and energy is well spent. I need to let go a little. Easier said than done.

I am so lucky to have people who care about me and are willing to help me. My husband is especially thoughtful and selfless. He is amazing. I couldn't imagine living without him, trying to manage everything from treatments to cooking alone. To be quite honest, if I lived on my own I'd probably starve! I just have to get used to the idea that until I am a few months out after transplant, this is the new reality.

Yeah, I think it's a control thing.