Sunday, April 4, 2010

Holidays Start Slowly

Despite my intentions to get up and go out to a local Easter fair with the hope of some Photos I didn't get up and spent the day at home.The weather was poor and so I wasn't to worried, with some encouragement from Liz the kids got on with some of the Homework that they have to do.In the evening, to save work for Liz, we all had a Indian Take away which was great.
Since last year when I had a persistent bug called pseudomonas aeruginosa in my lungs that took several months to treat, I have been unable to do much to help with the cooking. I now get so breathless when cooking that Liz has asked me not to.
I found this hard to deal with as I was doing a lot of the cooking when I was better,I felt that that was my contribution to the household.This is one area of the illness process that is most hard.Continuing to adjust to what is possible as you get more unwell.When I went for my assessment for 4 days at Harefields Hospital in January 2009 before I went on the list in September 7th 2009 I was a bit concerned that maybe it was to soon to be considering transplant as other people at the clinic were on Oxygen continuously and I could get by in the day without most days. But now I find myself using Oxygen every time I go out, and my concentrator runs 24/7 at home so it seems it was just the right time to be listed.


  1. HI there, how nice it is to read someone has the same things going through their head as me !! I have Cystic Fibrosis and with that I also have Psudemonus Ariginosa (not sure of the correct spelling) I also have has 4 collapsed lungs and in the end i had my lungs "talc'd" (stuck to the chest wall) to stop any risk of collapsing again ! because of this i am waiting for a heart and double lung my heart is fine and the only reason i need heart as well as lung is because of the talcing and my size (im 5ft and 7stone). Do u have Cystic Fibrosis?

  2. Hi Jodie I do not have Cystic Fibrosis but I was a lifelong asthma sufferer before a pneumonia in 2005 finally tipped the balance. I have had similar problems with my right lung collapsing I also had talc put in my lung but I suffered a reaction to having it done that nearly killed me.I was so lucky that the lung inflated again and stayed up mostly.I am glad that it is useful to hear that you are not alone with your feelings and I would recommend the transplant cafe as a place to join where people will know what you are feeling.


Thank You :-)