But first! An update on Kim! She is still a little too weak to come off the ventilator. Much better to wait until she's strong than pull it too early and then maybe have to intubate again if something goes wrong. She's fighting a bit of a fever but other than that she is doing well. She is fairly alert (which on the vent is torture...) and I know she's fighting hard. I know she's super thirsty and her mouth feels cruddy.
I have been so anxious the past few days because I know that they are only posting some of the real deal. Jeff did the same thing. It's a hard balance to give people encouraging information but still tell it like it is, which at times can be really crappy. Recovering from a double lung transplant is no joke. It sucks. I know these are normal bumps in the road, but man, it is so hard to be an observer! Now I know how all of you felt... I'm checking Facebook a hundred times a day for updates.
It also has forced me to relive some of my experience, which brings back a lot of frustration and emotion when I think about being on the vent. Not being able to communicate well was pure hell. I know my Dad was just so happy that I was responsive and wanted to hold my hand but it just pissed me off. I think I was like, "well if you can't understand me then get away from me." Ack!
So I have been thinking about Kim a lot. Try not to beat up your family with your flailing arms TOO much, Keem!!
I went for a run with Jeff this morning. Again, these aren't really "runs" as much as they are me attempting to jog. I can run for 1:30 without stopping! Not gonna make my goal of 5 minutes nonstop by Christmas, but still making progress so I'm happy. My joints feel better, really not much pain anymore. Now my lungs and heart seem to be the limiting factor. My heart is trying to get back in shape.
Jeff is so amazing and just keeps encouraging me to try a little harder. He gets out there with me and runs at my crazy slow pace which I know isn't fun for him. But he says my pace has picked up a bit so it's not so miserable for him anymore. Woohoo!
I've had a few days of feeling a bit run down. I think it's from a lot of things. Getting out and exercising seems to help a bit. I have a little gunk in my left lung that works itself out by the end of my run (I walked yesterday to get it out). I did a pulmonary function test on Thursday and my numbers (FEV1) just keep getting better!
A bunch of us did the Holly Jolly Trolley Tour on Thursday night. It was fun. We sang Christmas Carols and saw some lights. There is a place in Pt. Loma that has the most amazing street- people can walk up the decorated driveways and all of the windows of the houses look like store front displays of Christmas stuff. Jeff and I are going to go back so I'll try to take some pictures.
I think the coolest part of the tour was the Pearl Harbor survivor that came. I thanked him for his service and he asked me a few questions. Jeff was very observant and saw that he was using a walker so we saved the first seat on the trolley so he wouldn't have to walk to the back. I think his wife said he was 97 years old. It was just very cool. I would have loved to spent some time talking to him. My dad's side of the family has strong ties to Hawaii and his cousin (Jim) was an infant during the bombing. My great-aunt (right? My grandma's sister?) wrote her experience during and after the bombing. Fascinating! It was interesting to read about her agonizing decision to get Jim (older brother) of Fred here in San Diego) off the Island to stay with her mother in Michigan. Things were kinda rough after the bombing with curfews and rationing and so forth. Family history is fascinating and really gives you a sense of who your ancestors were as human beings.
Last night was my first breakdown about my hair. I have gotten a lot of great suggestions and plan on trying Biotin and Rogaine with the approval of my Team. Brenda suggested a hairstylist who battled cancer and has tips and tricks for cutting and coloring hair to make it look fuller. I'm going to make an appt. I was going to wait until my clinic visit in January to ask about the hair stuff, but after last night Jeff is going to call them on Wednesday.
This is how I think I look:
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| Yessssss, my precioussssss... hair. |
Just the hair... my teeth aren't that bad! I know it's not that bad yet... but what if it gets there? Oh, the horror!!!! Now I know how Leenie felt when she lost her hair from Chemo. She has some fantastic wigs. That's Jeff's Aunt. She fought Stage 4 colon cancer and is cancer free as of a few weeks ago! What a great Christmas for her! Really hope that damn cancer stays in remission :-)
Jeff and I really enjoy coming home from dinner out and going for a walk around the neighborhood. Everyone's lights are so pretty and the temperatures have been quite nice. I just feel really good when I at least get out and walk every day. Gets everything moving and flowing! My lungs are super happy when I keep them exercised.
I am sitting here with Max curled up next to me under the blanket (yup... he claws to get under the blanket either in my lap or next to me), Gracie snoring in the cat condo, Christmas music on, the tree lit up (lighted?), and I am very content. I am going to make some cookies this afternoon while Jeff watches football. Couldn't ask for a better Sunday.
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| Because I can... pic of Max getting some sun and using the cat toy as a pillow. Stupid cat. |
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| Before Jeff's Christmas Party a few weeks ago. |
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