Daily Life - update

The past week or so have been very busy. I am able to do more and more, both around the house and around Scarlett. It's been great, but with it has come pain in my shins and feet. Terrible pain. So far it has been decided that this is all de-conditioning of the muscles. Of course that makes sense since I have not been walking for months, and now I am running around all over the place, and working out, and using all those little muscles in my shins and feet that seem to be the last to come back. The rest of me if getting better and better. I am gaining weight. Looks like about 2lbs per week now. I am at clinic each week, as they are following me very closely. I work out twice at TGH with the physio team, and even though it's at the hospital, I really like the staff and the work out I get. I tend to push myself and actually get a work out in. I also have my new spinning bike, which I LOVE! I can get on it any time during the day without leaving the house and get a killer work out in. Martin liked to lounge on the bed and yell at me while I do it - getting me back for all those years he'd do his work out and I would sit on the couch and veg out on terrible CF diet food. He's loving the new me! haha.

The big change is that I got my home spirometer. It's a little machine that measures my lung function at home. I do it each morning at 9am to see how my lung function is that day. The idea is to be as consistent as you can, as to notice change day to day. The instructions are as follows. Do it at the same time, after the same routine, 3 times (no more or less), and record the numbers. If there is a 10% decrease (as in I am always 2.75L and one day I am 2.47 or under) this is something to give the lung team a call about. We have a system at TGH called Easy Call, which is a personal voice message service that each patient has to leave messages on or get them from the lung team. It is brilliant, as communication between the team and myself is very easy. I call my number, leave a message, they call back REALLY quickly. Love it. Anyhow, for interests sake, these are my numbers right now, that luckily enough correlate quite nicely with the FEV1 numbers I get at TGH at the PFT lab.

Feb 6th 9am

Temp: 36.59c

FEV1: 2.37, 2.75, 2.81

Feb 7th 9am

Temp: 36.45c

FEV1: 2.58, 2.58, 2.66

Feb 8th 9am

Temp: 36.46c

FEV1: 3.11, 2.86, 3.01

It is important to do 3 tries, as not every time you blow will be your best. 3 tries seems to work well to get an accurate highest number. The number that they look at when you bring them your recordings is your highest that day. I tend to get better as I go, most people do I gather, but this morning I blew my best number first, go figure. The spinning is really doing it's job to get my lungs working, I like 3.11L!! Woohoo. I know that I usually speak in percentage terms, but since those are not true (depend on the machine etc) using liters is better practice. For those that are not familiar with what that means, when I was pre tx, I was about 0.56L at my lowest when I was able to measure (blow into the machine). I was just over 1.0L for the past 5 years or so, which is about 30% lung function. So you get the idea, that 3.11 is very high. Way into the normal lung range, between 80-100%. I know numbers are not everything, but they certainly paint a lovely picture of what lung tx can do for someone like me. Quite inspiring.

So that's the nitty gritty of my mornings. All this takes very little time. Being someone who always recorded how I was feeling, when, after what treatment, this is not a big deal for me. Measuring temperature each morning along with my lung function gives me a nice idea of how things are going. Gives the lung team a lot of information also when they don't see me. Being the true type A that I am, I love having this sense of control.

Of course this is not all that I do all day. Once I get the pills, and the tests out of the way, I am doing more and more and more around the house and with my life. It feels great, though I tend to over do it, and I pay the price with sore legs and feet. But I have a hard time sitting still.

Last week Martin and I went out with friends for the first time. We met our good friends M and P for a great Indian dinner, and since I have not been out for at least 8 months, and I have not seen M and P since the end of the summer, it was really a great night. In that time they had a baby, so we spoke a lot about Scarlett and their little K. It was something else, being a regular mom, out to dinner with her hubby with some friends, chatting away about our kids. Crazy, if you think where I was 11 weeks ago. The conversation still was mostly about the tx and all that went on, and I hope that I did not bore people to death. I have this need to talk about it with people, and I am starting to think I have to stop. Move on. Talk about something else. I don't want it to be all about me, I hate people that are all about them. But hopefully my friends know that it's something I just have to get out right now. There is so much to tell. I have to stop myself and remind myself that people have things to say about their amazing lives. Since I really do want to know, I am just too excited about my new life. I promise everyone out there, time will help me stop gabbing about it!! It's very selfish!!

Here is a picture from the night. I like getting a pic of me every week - so that I can record progress. Plus I love the fact that I am not in sweat pants or hospital gowns! Feeling pretty is something that you lose quickly after so many months in the hospital.

Martin took this picture when we got home. I wish I took one at the restaurant, but the four of got were talking and we never managed it. Next time!! So this is week 11. I'm keeping track =)

I know there have been some other questions that I did not get to answer from the Q & A, since they were added in during the last few days. I will take a look and answer them another time. Right now I am working on a few posts that are specifically for CF parents, as well as patients. Both to do with lung transplant, but also my experiences with school, work, etc. I feel like I have somethings to share.