Tuesday, October 05, 2010


I have had an amazing weekend.
Nope, I didnt do anything huge, life changing or even that exciting. What I did was, be almost normal. I had a day that someone my age might have, I did things that I used to do. I paid for it afterwards, but I had the fond memories to go on with.

Thursday I picked my niece up. I wanted to steal my sisters photos, and I managed to do all that without her noticing me. Which is pretty good as not long ago, I could have coughed and panted to much to do anything in secrecy or even to have the energy to do it.

Friday, I scanned a lot of the photos and got them printed. I also did some shopping and had a movie night with Alison and my niece. Saturday I got up early. And it was early, it was like 7:30am!! And I took Alison to her Ice skating lesson. My niece and I both got on the Ice afterwards. I didnt do much last time I went skating as I just didnt have the puff to do it. I had to stop every half a lap to get my breath back. This time, I could get round at least 2 laps before needing to stop. I didnt do to much as my blades need sharpening and the rink was crowded, but I was pleased with what I did do.

I had a wander around the shops and took Alison home. Had a bit of an argument at home, which wasnt fun but oh well. Took my niece home and came home myself. Sunday the spoon theory really did come into play. Mum commented that I was breathing heavy again and I just felt so drained the entire day that I hardly moved.

Today, I still feel so drained, but I woke early for me this morning. I found myself sitting bolt upright at 10:30am gasping for breath. I ran some nebs and rested, but sat more upright. I checked my peak flows and they had suddenly dropped to 140. I was thinking oh no, not already. But after some nebs and moving about today, I seem to be breathing a little better. So I have everything crossed that I had either drained myself too much on Saturday or that I had slept with my mouth open and dried my throat out.

Remember a while ago, my surgeon here had applied for funding for me to get a humidifier to help ease the issues I was having with my trach? Well, I got response from the funding place on Friday. It only took 4 months!! Anyway, they have granted me the funding. I didnt know what to do at this point, as I dont have the trach anymore so I didnt know if I was still eligible. Then came the issue of, would it help now? and if it didnt, would that not be a waste of money if I still got it. I put it on my list of things to get sorted when I get a chance.

Today, the respiratory nurse phoned. She had the letter confirming the funding and wanted to clarify a few things. She said she had discussed it with my surgeon, who knows I dont have the trach, but given my current issues, the surgeon still thinks that I should get this equipment. That it might help with the issues I am now having. For example, if I ran it through the night, I shouldnt wake up needing to urgently neb all the time. His original hopes were that, if I had this equipment and slept with it on, it might help my breathing so much that I wouldnt need to neb during the day at all, and so I could get on with things easier. So apparently the medical engineers at the hospital are currently in discussion and meetings with the company that supplies them to discuss which one will be the best for me and how to get it and such. Its strange how much work goes into getting one piece of equipment.

I have the solicitors tomorrow, which I am dreading. Getting through that, especially without crying, will be a challenge. I did however, have to calculate all my hospital associated stuff. In the last 13 months, I have had 72 separate appointments, spent 142 days as an inpatient in hospital and been to theatre 16 times. No wonder this year seems to have vanished with nothing to show for it.

But, through all that, I am inspired. Greatly so. I stumbled across the blog of a lady who is currently on the heart transplant list due to cardiomyopathy (Which is generally when the muscles of the heart become weak) She had an internal defibrillator planted in her chest, which went off during her speech on her wedding night. Since then she has detoriated and now has, what is effectively an artificial heart, while she waits for transplant. She has to carry part this around, in a backpack style bag. Yesterday, she posted about what she has been up to. Andrea has been going to the GYM and participating in Yoga and pole dancing classes. WOW. I mean just wow. I cant even bring myself to go the gym with a working heart, never mind carrying equipment and whilst on the transplant list. Kudos to her!! I really hope she gets her call and soon. Her blog is here if you wish to read http://stayingtruetomyheart.blogspot.com/ )


  1. I am glad to hear about the humidifier and happy you had a nice weekend.
    I have a friend who has cardiomyopathy problems. She is holding steady on her meds, but it is likely she will be needing a heart transplant some day.

  2. rebelmom here
    So glad you had a nice "normal" weekend Kim. I am also glad that your surgeon feels that the new (funded :D) equipment may very well help with your continued recovery! I am going to check out the blog you've recommended as I'm sure I will be as amazed at the efforts Andrea is making to have her normal life, as I have been by your efforts to do the same. Take care, and I'm sending best wishes that the "normal" life you are reaching out for continues to be within your grasp.