Happy 2014 to anyone that might stumble upon this blog!
its mad to think how much of a rollercoaster my life has been since I started this blog a few years ago, I barely blog any more but it is interesting reading back on my earliest of entries!
so whats going on in the world of sprog...well not much, id like to say im running around making the most of life and my lungs are doing amazingly, but there not- but im still alive and breathing so that's a good thing surely haha!
ive had a lot on my mind for about a month or so now, and been wanting to blog ALOT but for first time in my life I think I kept a lot in for a while, even from my mum and husband, I didn't want to talk to anyone or let anyone know how much was really on my mind, been massively worrying and I think the only person I really felt I could open up to was my best friend who happens to be on the other side of the world at the moment!
so as we all know in the cf world winter season is the worse time of the year for us! there's bugs and colds everywhere and the cold weather just hits us like a ton of bricks, so recently ive been struggling a lot, and ive needed to go into hospital prob since before xmas but as I was only in there in October the thought of another admission so soon was killing me so ive put it off and put it off until last week I decided I couldn't handle feeling like this anymore and got in touch with the hospital.
but since feeling like this, struggling more, using oxygen and wheelchair, sleepless nights, constant coughing or struggling to catch my breathe and progressively getting worse, lee (my husband) has been making a few comments casually in in normal convos like "well in future when you have your new lungs" or "once you have a transplant" bla bla bla its got the thinking about a lot.
and basically scaring the crap out of me.
when I first started this blog, I know exactly how unwell I was, I could see how unwell I was and I knew my only choice left in life was to get listed and wait for some shiny new lungs to give me my life back, it wasn't an easy choice, but its something I accepted and was well prepared for, I made a lot of friends who were in the same situation as me and I had a lot of support and my head was totally in the right place, positive thinking and all that.
then kalydeco was thrown into the equation...which don't get me wrong I am so thankful for, its saved my life, there was no certainty that I was going to get a transplant, I had already been on the list for 7 months with no calls. but kalydeco turned my life around, it got me off my oxygen all the time, it gave me some independence back and most importantly it gave me hope that I wasn't dying as such anymore, there was still life left in me and I wasn't going to let it slip away, I had my second chance without going thru transplant, I got engaged, married holidays and much more and here I am year and half later.
but now what happens. I hate that my heads feeling like this cause im not negative but I cant help but think well how long is it going to last, is that it now, im beginning to se myself getting more periods of becoming unwell again, maybe its because its winter but maybe its not. I mean kalydeco hasn't un-done any damage to my lungs, its just stopped anymore damage from being caused. at my best I still only have 24% lung function which drops to 16% when unwell, that's 76% of my lungs when im well that ive lost!
my heads all over the place I worry so much about my future now...I know that as great as kalydeco is im not superhuman and this lungs wont last me forever, I just wish I had a crystal ball to give me a heads up! lol although I have struggled more generally at the moment I think well im still alive, im not attached to machines 24/7 ok if im going out at weekend I no I need to basically stay in all week to prepare myself and then after have some days at home too but I can still push my body to enjoy special times!
will I ever know when the right time is to think this could be it now? now its time to get back on that transplant list.
or will life catch me off guard?? you hear about those people that one minute there ok next minute infection just wipes them out and there dead...
see what im dealing with in my head? haha
thennnn... ok I go down the transplant route again at the stage I am now, I have a transplant which is such a precise gift, and Im one of the unlucky ones that gets rejection straight away or after a year and theres nothing anyone can do and I no that's it il be dead, before I was happy to take that chance because I knew I was getting worse and worse but if that happens now would I regret ever having a transplant knowing I would have lived longer without one.
also before going down the transplant route I didn't know much about rejection and didn't know of anyone that had it, I heard all the good stories and great out comes, which is exactly what you want to hear, gives you that hope, in some ways I was naive, now ive read up so much about the worse case of what happens, and the side effects and everything to put you off basically- not one of my best moments!
I hate the uncertainty in my head, ive always known growing up my life would be shortened, but now im older, and I have the best life, my husbands amazing my family's amazing my in laws are amazing I have the best friends. I love it, I want to enjoy it forever, I want to grow old and grey.
my plan since starting kalydeco was to do as well on it for as long as poss and by the time I need new lungs I was hoping they had learnt how to grow your own lungs stem cell and all that, well I read up about it online recently and im a bit early for all that, apparently its more our grandchildren's, children will be doing that....so that's that plan out the window :(
god this really is a depressing blog sorry bout that just have to get it off my chest, and I don't want this to seem like a negative blog towards transplant and organ donation because its truly one of the best gifts ever and I see the people who are doing amazingly and I think wow like why am I even worried!
but always going to be honest about how I feel in my blogs and this is how im feeling
xx
its mad to think how much of a rollercoaster my life has been since I started this blog a few years ago, I barely blog any more but it is interesting reading back on my earliest of entries!
so whats going on in the world of sprog...well not much, id like to say im running around making the most of life and my lungs are doing amazingly, but there not- but im still alive and breathing so that's a good thing surely haha!
ive had a lot on my mind for about a month or so now, and been wanting to blog ALOT but for first time in my life I think I kept a lot in for a while, even from my mum and husband, I didn't want to talk to anyone or let anyone know how much was really on my mind, been massively worrying and I think the only person I really felt I could open up to was my best friend who happens to be on the other side of the world at the moment!
so as we all know in the cf world winter season is the worse time of the year for us! there's bugs and colds everywhere and the cold weather just hits us like a ton of bricks, so recently ive been struggling a lot, and ive needed to go into hospital prob since before xmas but as I was only in there in October the thought of another admission so soon was killing me so ive put it off and put it off until last week I decided I couldn't handle feeling like this anymore and got in touch with the hospital.
but since feeling like this, struggling more, using oxygen and wheelchair, sleepless nights, constant coughing or struggling to catch my breathe and progressively getting worse, lee (my husband) has been making a few comments casually in in normal convos like "well in future when you have your new lungs" or "once you have a transplant" bla bla bla its got the thinking about a lot.
and basically scaring the crap out of me.
when I first started this blog, I know exactly how unwell I was, I could see how unwell I was and I knew my only choice left in life was to get listed and wait for some shiny new lungs to give me my life back, it wasn't an easy choice, but its something I accepted and was well prepared for, I made a lot of friends who were in the same situation as me and I had a lot of support and my head was totally in the right place, positive thinking and all that.
then kalydeco was thrown into the equation...which don't get me wrong I am so thankful for, its saved my life, there was no certainty that I was going to get a transplant, I had already been on the list for 7 months with no calls. but kalydeco turned my life around, it got me off my oxygen all the time, it gave me some independence back and most importantly it gave me hope that I wasn't dying as such anymore, there was still life left in me and I wasn't going to let it slip away, I had my second chance without going thru transplant, I got engaged, married holidays and much more and here I am year and half later.
but now what happens. I hate that my heads feeling like this cause im not negative but I cant help but think well how long is it going to last, is that it now, im beginning to se myself getting more periods of becoming unwell again, maybe its because its winter but maybe its not. I mean kalydeco hasn't un-done any damage to my lungs, its just stopped anymore damage from being caused. at my best I still only have 24% lung function which drops to 16% when unwell, that's 76% of my lungs when im well that ive lost!
my heads all over the place I worry so much about my future now...I know that as great as kalydeco is im not superhuman and this lungs wont last me forever, I just wish I had a crystal ball to give me a heads up! lol although I have struggled more generally at the moment I think well im still alive, im not attached to machines 24/7 ok if im going out at weekend I no I need to basically stay in all week to prepare myself and then after have some days at home too but I can still push my body to enjoy special times!
will I ever know when the right time is to think this could be it now? now its time to get back on that transplant list.
or will life catch me off guard?? you hear about those people that one minute there ok next minute infection just wipes them out and there dead...
see what im dealing with in my head? haha
thennnn... ok I go down the transplant route again at the stage I am now, I have a transplant which is such a precise gift, and Im one of the unlucky ones that gets rejection straight away or after a year and theres nothing anyone can do and I no that's it il be dead, before I was happy to take that chance because I knew I was getting worse and worse but if that happens now would I regret ever having a transplant knowing I would have lived longer without one.
also before going down the transplant route I didn't know much about rejection and didn't know of anyone that had it, I heard all the good stories and great out comes, which is exactly what you want to hear, gives you that hope, in some ways I was naive, now ive read up so much about the worse case of what happens, and the side effects and everything to put you off basically- not one of my best moments!
I hate the uncertainty in my head, ive always known growing up my life would be shortened, but now im older, and I have the best life, my husbands amazing my family's amazing my in laws are amazing I have the best friends. I love it, I want to enjoy it forever, I want to grow old and grey.
my plan since starting kalydeco was to do as well on it for as long as poss and by the time I need new lungs I was hoping they had learnt how to grow your own lungs stem cell and all that, well I read up about it online recently and im a bit early for all that, apparently its more our grandchildren's, children will be doing that....so that's that plan out the window :(
god this really is a depressing blog sorry bout that just have to get it off my chest, and I don't want this to seem like a negative blog towards transplant and organ donation because its truly one of the best gifts ever and I see the people who are doing amazingly and I think wow like why am I even worried!
but always going to be honest about how I feel in my blogs and this is how im feeling
xx
Hi, we haven't spoken before, but I follow your blog (I have an 8 year old boy with CF) and reading this really wanted to leave you a comment too. I agonise for you and the position you are in. You deserve to grow old and grey, more so than many! I'm sorry, I can't offer any real advice, only that I am friends with many who have had transplants, and some even twice, who are doing amazingly well. But at the same time, I can understand you wanting to carry on for as long as you are stable. I guess if it were me, and I had a team that I trusted, I think I would be led by what they think. Wait or relist. I don't know.
ReplyDeleteI'm not being very helpful am I. I guess what I really wanted to say was that I care, and I am sending you a huge (virtual) hug.
Take care. Lizzy x
I was in your exact place. I got a tx and it was worth it all. I know its scary and you feel alone and just $hitty all over the place. New lungs are a miracle so try not to be scared. Get yourself ready.
ReplyDeleteRead the book Think and Grow Rich. Its all about preparing your bodily mentally for the future you wish to have. The title is misleading but you'll understand when you read it. Imagine your life with new healthy lungs.