a month's worth....

I know I'm rubbish at updating lately (or not so lately!) but I do feel really bad that I haven't updated in a month.

Rest assured I'm fine, I wish I could say I've been off getting some new lungs but sadly I haven't. It's just been circumstances really, coupled with the fact that not many people seem to have been reading recently so the urgency to update wasn't there.

The first and main reason for not updating was that I've been finishing the last essay for my current course which has taken up a lot of time the last couple of weeks. Its finally finished now and I have to say I'm glad this one (providing i pass) is done and dusted. I have found the wording and subject matter to be very hard going and its not really been something that has interested me at all. I've also struggled a lot on this course with concentration and stress. I've been feeling so low with the day to day pressure of being on the list and my poor health as well as the additional stress of when I was calorie counting and then the ultimatum from my transplant center about NG feeding and all the extra work that entailed. All this meant that I had to lean very heavily on my tutor to help me out, which he did immensely. It has opened my eyes to whether I can realistically take on another course before my transplant because I want to do my best and get the best grades I can, and in my current situation I'm not sure I can do that. On the other hand the OU work plays a huge part in keeping up my morale and giving me purpose so its an extremely hard one to judge. I guess we'll just have to wait and see.

I also had my Annual Review at my hospital a couple of weeks ago which was a very long day but thankfully seems to show that I am remaining stable from last year. A blessing and miracle in itself. I was really exhausted mentally and physically after this day long visit but at least the news was pretty good.

I did have one issue that came up which I wasn't sure whether to share on my blog but I've always said that its an honest account so I will include it.

I found out that I had gained a massive 5kg in weight since I started feeding (6 weeks) which everyone was really pleased with. Im now the highest weight I've been for years and can visibly see the weight on me. However although being thrilled with this news I was less than happy when I found out that because of this weight gain I was being put BACK on the transplant list. Now as you know, I had no idea I had been suspended from the list, but it seems that since I went to my tranpslant center I have in fact been suspended from getting any calls until I reached my target weight, about 6 weeks in all.

I was pretty shell shocked when I found this out and took a few days to work out how I felt about it. I know that sounds a bit dramatic but when you spend your days living in a state of limbo just waiting for that phone to ring, only to find that for the last 6 weeks there was no chance of that happening, it is a big deal. It was certainly kinder in the long run that I didnt know. I would have been under terrible pressure to get back on and I'm not sure I would have gained the weight or learnt the NG process nearly so well I had had that urgency hanging over me. Of course I felt very upset and hardly spoke to anyone about what happened as I couldn't bear to go over and over it or think about it in too much detail. I do however completely understand why I was suspended and that with my weight being so low my transplant doctor had very little choice but to act the way he did. I have spoken with my transplant hospital and I am definately back on the active list now, I also know they worked as hard as they could to get me back on the list as soon as possible. I'm looking forward now and focusing on the fact that my chances are so much improved with the extra weight I've gained and that I'm back on that list so a call can come at any time.
In everyday life, theres not much to report. I'm trying to find things that I can fill my time with. Without uni work I get very bored and now the summer is here I do find it hard to get out as the heat causes my lungs suffer a fair bit. The school holidays are also coming up which means that everywhere gets very crowded and difficult to navigate in my wheelchair so finding things to enjoy are a definate must.
I hope all my lovely blog followers are doing well at the moment and I do promise to update more regularly even if it is with mundane details about day to day things.
Much love to you all xxx


  1. glad you finally updated mrs!!! tut tut. As always, thinking of you and sending lots of love and positive thoughts your way. You are absolutelty amazing, I dont tell you that enough, I know you'll get there, hopefully very, very soon. Looking forward to catching up with you wednesday ;)

    love you lots x x x x

  2. well done on the weight gain!! I think this will make them more likely to call you now as they know you are strong enough. fingers crossed :-)

  3. i cant believe they took u off list,without telling you!! im in shock! im glad u reached your target weight tho! well done!

    and lets hope u have more luck now!! love love xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  4. im so glad to see you back, and with all of that wonderful weight. im not sure how i would feel about the whole off of the tx list thing if i were in your shoes, but i would have to say in hignsight it was better that you didnt have that extra stress.
    sending hugs, good vibes and lots of prayers

  5. Hiya hunni,

    First of all, well done you for completing something you weren't interested in, it's hard enough when you do have a wee bit of interest in the thing. Also good to hear about the weight gain and re-joining the list, but being off it without knowing must have been hard to get your head around.

    You're a star you are.

    Hoping to keep up to speed a bit more now I have some time off. Take care.
    Much love.
    x x x

  6. Hi, I found your blog through Rachael's blog, "anything but ordinary" My husband had a double lung transplant almost 11 months ago. You have been through alot, and will be in our thoughts and prayers.

  7. just a little note to let you know your in our thoughts and prayers!