Since Friday and having the news that I was active on the transplant list it has felt really surreal.
I get a mixture of emotions running through me every minute of the day, both positive and negative. It’s hard to explain but when people ask how I feel I still really don’t know how I’m supposed to answer them.
In a way I don’t think it’s ever going to feel real until I get my call, and I say until because I’m obviously trying to be positive!!!
I don’t think it’s helped me feeling really unwell over the last few day’s. Although we didn’t seem to do very much during Stefan’s week off last week, it also feels like we did loads because I just don’t have the energy for things anymore.
I certainly was getting out of the house, pretty much everyday and that hasn’t happened for a good few months.
I had a lovely weekend resting through the day’s on Friday & Saturday and spending the evening with good friend’s.
It wasn’t until Sunday that it really hit me. I knew I had over done it so both Stefan & I agreed that I’d do nothing this week but completely rest.
I’m in desperate need for iv’s now, my breathing is really bad, not even bi-pap is giving me a rest. I’m getting a lot of chest pain and can’t seem to relax at all. I’m hoping to start iv’s again in the next couple of day’s after a 5 day break, I just need to hear back from my CF nurse’s in Exeter.
Even though I’ve been really poorly, I have started to plan a few things.
I know it sounds morbid, but I have sole tenancy of my house at the moment and should something happen to me, I don’t want Stefan to have to deal with the aftermath of it all. We are having a meeting with my housing officer this week to change it from sole to joint. I have also been thinking about my will.
From negative to positive, Stefan & I are going to try and sort out a little bag sometime this week to put a side ready for me take to Harefield should I get my call so we won’t be rushing about.
I’ve also managed to find some holiday accommodation for my beloved snake babies at real short notice when the time comes whilst Stef is down in Harefield with me. This is what worried me the most, I love them so much I just want them really well looked after so it was a huge weight off my shoulders when I received a phone call earlier today.
I think that’s what I’m going to hate the most whilst I’m recovering, I handle my babies everyday and the possibility of me not even seeing them for about two months makes me feel physically sick. I’m definitely going to work my ass off to get myself as strong as possible and out of there so I’m back home enjoying life with them, my amazing hubby & my new lungs…
I’m in the middle of writing a goal list of things I want to do after I’ve recovered from my transplant; I’ve also had a few emails back and forth from my local newspaper and Live Life Then Give Life so please watch this space, I’ll be sure to keep my blog readers posted…
Monday, 30 January 2012
Friday, 27 January 2012
Listed On The Transplant List!!!!!!!!
I’ve just had a call off Jenny, a transplant co-ordinator in Harefield Hospital & I can now announce I’m officially listed on the Transplant Active List!!!
I’m stunned, I’m not really sure how I’m writing this blog in all honesty… Obviously I’m relieved, happy something has finally been done to maybe give me a second chance at life but I’m also absolutely bricking it!!!
Let’s rewind two days ago to my day trip to Harefield for clinic.
I don’t sleep very well at the best of times, I usually don’t see my bed until 2/3am every morning and tend to sleep until about 11ish the next morning, but it‘s always very interrupted with bouts of coughing & breathlessness…
I knew the next day was going to be really long, so I had a soak in the bath, took some sleeping tablets and was under the covers at about 9pm. The tablets must have worked as eventually I did slip off and only woke occasionally until the alarm bleeped at me at 5am the following morning.
Stef dressed me after I washed and filled up my portable oxygen canister and then we were off… In the pitch black, shattered & nervous as hell.
We finally arrived at Harefield at about half 9 and we got stuck straight into the morning tests. ECG, followed by lung function which bloody killed me!!
Then my chest x-ray and a first attempt at the 12 bottles of blood they needed taking.
I have a portacath which bleeds back really well but for some reason the nurse had real trouble using it this time round and I only managed to fill four, I knew this wasn’t a good sign as bloods are vital for your listing, especially for tissue typing to match your donor.
We had a small break for lunch and before long we were back waiting to see the consultant, I was worried that I might not get to see Dr Carby.
You know when sometimes you book to see your GP and get someone else. I really wanted, and felt I needed to see him so he could see for himself the change in my condition since he saw me for assessment back in November.
My name was called and in I went… or should I say pushed!
I can honestly say I wasn’t in there for longer than five minutes!
He took one look at me and saw how much I was struggling, I gave him my list of notes that I had written since November about things that had happened, treatment I’d been on etc as I know letters aren’t always passed on between hospital teams.
He apologised for the Itraconazole not working and for how much I was now struggling and turned to Jenny and said we need to get her listed now please.
As simple as that… I was gob smacked, I really thought he’d want to know in’s and outs or run more tests but no, he finally wanted me on the list!
I was told I had to wait for my bloods to come back and then the paperwork would be processed and I’d get a call to say I was active, they said it would take a day or two and boy they weren’t lying!
I had to tell them about my problems with the blood and they said they really needed to try again so with that we shook Dr Carby’s hand and I was whisked off to have my blood taken again.
With a little help from my good self (I know best how my port works and how to handle it!) We successfully filled all the bottles of blood needed.
Ten to three and we were done. I got the news I so desperately needed.
I just wasn’t sure how to feel. We didn’t get home until about 7pm and I was exhausted. I didn’t have the energy to eat or really talk to anyone, I just wanted to sleep.
Now I’ve had the confirmation I still am not really sure how to feel. I guess I never thought about the reality of the situation I am now in. I have to stay positive and continue to live life as normally as I can, but with the pretence of trying to keep as well as possible.
Maintaining my weight is very important and I need to continue doing my little exercises to build up my muscles. I’ve noticed a lot lately from the lack of movement that I’m wasting away a little and my arse is now non existent!!
Now it’s just a waiting game, one thing that Dr Carby did say to me is that as I’m blood group A, the statistics for Harefield is they never usually have an A group patient on the list waiting for longer than a year…
This being said, there is a 50% chance I could not get a transplant at all.
Other statistics show that there is a 10% chance you don’t survive the operation. Out of ten people at Harefield, one will sadly pass away.
Then there are percentages for how long you will live once you have recovered from your transplant, varying from 30 days to ten years onwards.
They usually predict the five year percentage depending on how your first year goes.
Scary stuff but those statistics are there for a reason and I wouldn’t have gone ahead with the assessment if I didn’t think it was worth the risk.
I’m still having nightmares and bad visions but I’m really going to have to try and push it all to one side and stay positive and optimistic!!
I’ve always carried a smile when things have been at their worst and I don’t tend to stop or give in now…
Now I’m active, I’ll continue to live my life the only way I know how and just pray that maybe one day, it’ll be my time.
Thank you to all my blog readers for your continued support, it’s been overwhelming and now to finish off, as I always say… falanges crossed!!!
I’m stunned, I’m not really sure how I’m writing this blog in all honesty… Obviously I’m relieved, happy something has finally been done to maybe give me a second chance at life but I’m also absolutely bricking it!!!
Let’s rewind two days ago to my day trip to Harefield for clinic.
I don’t sleep very well at the best of times, I usually don’t see my bed until 2/3am every morning and tend to sleep until about 11ish the next morning, but it‘s always very interrupted with bouts of coughing & breathlessness…
I knew the next day was going to be really long, so I had a soak in the bath, took some sleeping tablets and was under the covers at about 9pm. The tablets must have worked as eventually I did slip off and only woke occasionally until the alarm bleeped at me at 5am the following morning.
Stef dressed me after I washed and filled up my portable oxygen canister and then we were off… In the pitch black, shattered & nervous as hell.
We finally arrived at Harefield at about half 9 and we got stuck straight into the morning tests. ECG, followed by lung function which bloody killed me!!
Then my chest x-ray and a first attempt at the 12 bottles of blood they needed taking.
I have a portacath which bleeds back really well but for some reason the nurse had real trouble using it this time round and I only managed to fill four, I knew this wasn’t a good sign as bloods are vital for your listing, especially for tissue typing to match your donor.
We had a small break for lunch and before long we were back waiting to see the consultant, I was worried that I might not get to see Dr Carby.
You know when sometimes you book to see your GP and get someone else. I really wanted, and felt I needed to see him so he could see for himself the change in my condition since he saw me for assessment back in November.
My name was called and in I went… or should I say pushed!
I can honestly say I wasn’t in there for longer than five minutes!
He took one look at me and saw how much I was struggling, I gave him my list of notes that I had written since November about things that had happened, treatment I’d been on etc as I know letters aren’t always passed on between hospital teams.
He apologised for the Itraconazole not working and for how much I was now struggling and turned to Jenny and said we need to get her listed now please.
As simple as that… I was gob smacked, I really thought he’d want to know in’s and outs or run more tests but no, he finally wanted me on the list!
I was told I had to wait for my bloods to come back and then the paperwork would be processed and I’d get a call to say I was active, they said it would take a day or two and boy they weren’t lying!
I had to tell them about my problems with the blood and they said they really needed to try again so with that we shook Dr Carby’s hand and I was whisked off to have my blood taken again.
With a little help from my good self (I know best how my port works and how to handle it!) We successfully filled all the bottles of blood needed.
Ten to three and we were done. I got the news I so desperately needed.
I just wasn’t sure how to feel. We didn’t get home until about 7pm and I was exhausted. I didn’t have the energy to eat or really talk to anyone, I just wanted to sleep.
Now I’ve had the confirmation I still am not really sure how to feel. I guess I never thought about the reality of the situation I am now in. I have to stay positive and continue to live life as normally as I can, but with the pretence of trying to keep as well as possible.
Maintaining my weight is very important and I need to continue doing my little exercises to build up my muscles. I’ve noticed a lot lately from the lack of movement that I’m wasting away a little and my arse is now non existent!!
Now it’s just a waiting game, one thing that Dr Carby did say to me is that as I’m blood group A, the statistics for Harefield is they never usually have an A group patient on the list waiting for longer than a year…
This being said, there is a 50% chance I could not get a transplant at all.
Other statistics show that there is a 10% chance you don’t survive the operation. Out of ten people at Harefield, one will sadly pass away.
Then there are percentages for how long you will live once you have recovered from your transplant, varying from 30 days to ten years onwards.
They usually predict the five year percentage depending on how your first year goes.
Scary stuff but those statistics are there for a reason and I wouldn’t have gone ahead with the assessment if I didn’t think it was worth the risk.
I’m still having nightmares and bad visions but I’m really going to have to try and push it all to one side and stay positive and optimistic!!
I’ve always carried a smile when things have been at their worst and I don’t tend to stop or give in now…
Now I’m active, I’ll continue to live my life the only way I know how and just pray that maybe one day, it’ll be my time.
Thank you to all my blog readers for your continued support, it’s been overwhelming and now to finish off, as I always say… falanges crossed!!!
Tuesday, 24 January 2012
Day Before Harefield
Tomorrow I’m off to Harefield for clinic and review since having last been seen at my transplant assessment back in November.
I’m really nervous about what they are going to say and have had a fair few emotional days leading up to it.
My lungs are really behaving badly now and I’ve been really poorly the last few week’s. I’m now on constant O2 at the moment as as soon as I have to move to go to the toilet or just try and get myself comfortable I have an horrendous coughing fit and cannot get my breathe, it take‘s me ages to feel rested again.
My chest aches constantly and every so often I get stabbing pains, nights are unbearable. I love my sleep but I can’t lie down and not even O2 eases me.
I’ve started using my bi-pap even more the last few days just to try and give my lungs a rest.
Stefan’s got a week off work and we’ve been having a lot of heart to hearts. Things are getting on top of me at the moment, I don’t feel well at all and I’m just so scared about the future. I need to stay positive but it’s hard to stay strong at times, when you don’t know what’s going on or what’s going to happen…
I’ve been having a few nightmares and bad visions which haven’t done me any good and think I have pretty much cried myself a river in the last 3 days!!
I had a really nice afternoon yesterday seeing a good friend who came to see us both and then on my portable O2, Stef took me out and we met our friend Marc and had a bite to eat in a pub. It was really good to put things a side for a short few hours and just have a laugh but I really paid for it when I got home and had a bad night of pains and not being able to breathe again.
Having a very quiet day just resting again today and preparing for the long day ahead tomorrow. Think we’ll have a nice dinner tonight courtesy of Dominoes and will try and get an early night as will be up and out around 5am.
Really hoping I get some good news, will keep you guys posted….
I’m really nervous about what they are going to say and have had a fair few emotional days leading up to it.
My lungs are really behaving badly now and I’ve been really poorly the last few week’s. I’m now on constant O2 at the moment as as soon as I have to move to go to the toilet or just try and get myself comfortable I have an horrendous coughing fit and cannot get my breathe, it take‘s me ages to feel rested again.
My chest aches constantly and every so often I get stabbing pains, nights are unbearable. I love my sleep but I can’t lie down and not even O2 eases me.
I’ve started using my bi-pap even more the last few days just to try and give my lungs a rest.
Stefan’s got a week off work and we’ve been having a lot of heart to hearts. Things are getting on top of me at the moment, I don’t feel well at all and I’m just so scared about the future. I need to stay positive but it’s hard to stay strong at times, when you don’t know what’s going on or what’s going to happen…
I’ve been having a few nightmares and bad visions which haven’t done me any good and think I have pretty much cried myself a river in the last 3 days!!
I had a really nice afternoon yesterday seeing a good friend who came to see us both and then on my portable O2, Stef took me out and we met our friend Marc and had a bite to eat in a pub. It was really good to put things a side for a short few hours and just have a laugh but I really paid for it when I got home and had a bad night of pains and not being able to breathe again.
Having a very quiet day just resting again today and preparing for the long day ahead tomorrow. Think we’ll have a nice dinner tonight courtesy of Dominoes and will try and get an early night as will be up and out around 5am.
Really hoping I get some good news, will keep you guys posted….
Thursday, 19 January 2012
IV’s, Oxygen & Physio
Well I can’t say much has changed since I wrote on Saturday.
My lungs are still behaving very badly and each day is rolling into the next.
My portable liquid oxygen was only delivered this morning so other than having to go to the dentist on Monday morning which was a bit of a shambles and Exeter Hospital for mid IV check yesterday I’m still pretty much suffering from cabin fever, although the snake babies keep my sane!!
I struggled immensely on Monday, I’m still on O2, especially if I have to get up and about or just move to get myself comfortable.
As I didn’t have portable O2 I rang the dentist first thing on Monday and told them I was rather poorly and couldn’t do stairs. They said it was too short notice and that I would be seen at the top floor by my dentist, which is three stair ways up - this worried me extremely.
When we got there I was offered a seat and water at reception and Stefan carried me to the first floor to the waiting room. I was struggling to breathe so much that one of the dentistry nurses noticed and got me their own oxygen straight away, she then must have spoken to my dentist as before I knew it I was being seen on the floor I was already on, and another patient was being told with apologies they’d be seen upstairs.
Although this caused a bit of hassle for people, I really was relieved and very grateful to the girl who came to my aid, so thank you, I’m sorry I didn’t take your name… She even came out with us to the car so I only went a very short distance home again without my O2.
Every other day has been spent on the sofa resting, O2 on and IV’s regularly plugged in, with Stefan caring for me around the clock. Luckily he had Tuesday & Wednesday night off work.
We went to Exeter hospital yesterday afternoon for my mid IV check. Unfortunalty after a week of IV’s they haven’t really helped much, other than a noticeable small decrease of mucus being brought up. I still have another week to go, if there isn‘t much improvement by next week I think they‘ll change them to something else.
I was seeing my physio and had taken up my V Pap which I mentioned in my previous blog.
The pressure was increased slightly so it was more of a force into my lungs as I took a breathe in, I have also been given a mask to strap on rather than holding the mouthpiece.
I have disposable ones for the time being as I’m waiting for my permanent mask to be ordered and delivered.
Using this brought back a few scary memories for me from when I was constantly on Bi- Pap in 2009, but I do know that it helps and during my time with my physio, we all noticed that it gave me a break from my poorly lungs trying to work so hard. I’m meant to use it for about 15 minutes twice a day now but my physio is going to speak to my consultant about using it more often when I feel I need to give my knackered body a rest, especially at night.
The team are also going to send me a direct access letter so if I have an emergency again, without having to have tedious tests done when your first taken into A&E, if I’m sent to Torbay instead of Exeter, the letter will explain all about me and what to do should I need urgent assistance. I think this will help a lot instead of me trying to explain everything I’m on and have to do to a medical person when I can’t even breathe in and out properly.
We also went through 3 gentle exercises that I can do whilst on my V Pap to help strengthen the muscles in my arms and legs so I can keep building up my stamina when it’s my time for transplant. Long gone are the days I could hang upside down from a pole, now it’s using a big stretchy rubber type band and pulling my knee up and out, again wow, I’m hardcore!
I am really relieved my portable O2 came today, this means it’ll give me a maximum of 4 hours of oxygen should I want to leave the house and I think it’ll certainly come in handy next week. I’m still really embarrassed and worried about the looks I get, but I can’t go without it now, and staying in all the time just isn’t healthy, especially for my mind, so they will gawp and I’ll just try my best to ignore…
Stefan is now working tonight until Sunday morning but then he has a week off. As you will know blog readers, I have Harefield next Wednesday, but even if I don’t feel my best I’m determined to get out for a day or two next week and spend some precious time with my husband. We haven’t much planned yet, but I was thinking of a nice meal out one evening, maybe catch a movie at the cinema and hopefully see some good friends in between….
I’m really anxious about the appointment but I just need to think positively and see what they have to say. I’ve written down notes to take with me about what’s happened since I saw them in November, and now I just really want some good news.
No matter what happens next week, I am certainly going to make the most of the time I have with my husband whilst he’s off. Thank god for portable O2!!!
My lungs are still behaving very badly and each day is rolling into the next.
My portable liquid oxygen was only delivered this morning so other than having to go to the dentist on Monday morning which was a bit of a shambles and Exeter Hospital for mid IV check yesterday I’m still pretty much suffering from cabin fever, although the snake babies keep my sane!!
I struggled immensely on Monday, I’m still on O2, especially if I have to get up and about or just move to get myself comfortable.
As I didn’t have portable O2 I rang the dentist first thing on Monday and told them I was rather poorly and couldn’t do stairs. They said it was too short notice and that I would be seen at the top floor by my dentist, which is three stair ways up - this worried me extremely.
When we got there I was offered a seat and water at reception and Stefan carried me to the first floor to the waiting room. I was struggling to breathe so much that one of the dentistry nurses noticed and got me their own oxygen straight away, she then must have spoken to my dentist as before I knew it I was being seen on the floor I was already on, and another patient was being told with apologies they’d be seen upstairs.
Although this caused a bit of hassle for people, I really was relieved and very grateful to the girl who came to my aid, so thank you, I’m sorry I didn’t take your name… She even came out with us to the car so I only went a very short distance home again without my O2.
Every other day has been spent on the sofa resting, O2 on and IV’s regularly plugged in, with Stefan caring for me around the clock. Luckily he had Tuesday & Wednesday night off work.
We went to Exeter hospital yesterday afternoon for my mid IV check. Unfortunalty after a week of IV’s they haven’t really helped much, other than a noticeable small decrease of mucus being brought up. I still have another week to go, if there isn‘t much improvement by next week I think they‘ll change them to something else.
I was seeing my physio and had taken up my V Pap which I mentioned in my previous blog.
The pressure was increased slightly so it was more of a force into my lungs as I took a breathe in, I have also been given a mask to strap on rather than holding the mouthpiece.
I have disposable ones for the time being as I’m waiting for my permanent mask to be ordered and delivered.
Me On My V Pap
Using this brought back a few scary memories for me from when I was constantly on Bi- Pap in 2009, but I do know that it helps and during my time with my physio, we all noticed that it gave me a break from my poorly lungs trying to work so hard. I’m meant to use it for about 15 minutes twice a day now but my physio is going to speak to my consultant about using it more often when I feel I need to give my knackered body a rest, especially at night.
The team are also going to send me a direct access letter so if I have an emergency again, without having to have tedious tests done when your first taken into A&E, if I’m sent to Torbay instead of Exeter, the letter will explain all about me and what to do should I need urgent assistance. I think this will help a lot instead of me trying to explain everything I’m on and have to do to a medical person when I can’t even breathe in and out properly.
We also went through 3 gentle exercises that I can do whilst on my V Pap to help strengthen the muscles in my arms and legs so I can keep building up my stamina when it’s my time for transplant. Long gone are the days I could hang upside down from a pole, now it’s using a big stretchy rubber type band and pulling my knee up and out, again wow, I’m hardcore!
I am really relieved my portable O2 came today, this means it’ll give me a maximum of 4 hours of oxygen should I want to leave the house and I think it’ll certainly come in handy next week. I’m still really embarrassed and worried about the looks I get, but I can’t go without it now, and staying in all the time just isn’t healthy, especially for my mind, so they will gawp and I’ll just try my best to ignore…
Stefan is now working tonight until Sunday morning but then he has a week off. As you will know blog readers, I have Harefield next Wednesday, but even if I don’t feel my best I’m determined to get out for a day or two next week and spend some precious time with my husband. We haven’t much planned yet, but I was thinking of a nice meal out one evening, maybe catch a movie at the cinema and hopefully see some good friends in between….
I’m really anxious about the appointment but I just need to think positively and see what they have to say. I’ve written down notes to take with me about what’s happened since I saw them in November, and now I just really want some good news.
No matter what happens next week, I am certainly going to make the most of the time I have with my husband whilst he’s off. Thank god for portable O2!!!
Saturday, 14 January 2012
Lungs Behaving Badly
It’s Saturday night and my hubby Stefan’s at work. Usually, I’d be quite happily curled up with one of the snakes watching the box with an alcoholic beverage or two, but the last few days have proven to be far more difficult than most and I seemed to have gone down hill quite quickly since feeling rotten after clinic on Wednesday.
It started on Thursday evening when all of a sudden I felt really unwell. I had a fever and my breathing was particularly unbearable, I was getting the same tummy cramps I had been getting but I could also feel and hear my heart beating incredibly fast in my chest, like it was about to explode.
I just couldn’t get comfortable, and sat on the edge of the sofa terrified to move, reason being I have felt like this once before.
Back on Boxing day in 2008, when I spent Christmas at my mums as I had been unwell and hadn’t got my carer at the time. I was rushed into hospital by ambulance and my heart rate was racing at over 170 beats per minute. They had to inject me three times in the foot to try and get it to slow down, after the third stab, it started to decrease but I had to stay in, much to my protest… With one thing and another, I actually ended up going into intensive care and then back onto my chest ward and was there for a total of four months…
Proberly one of the most scariest times of my life so it goes without saying why I was so frightened the other night that it maybe happening again.
I took my pulse and Stef got my oxygen which I put on straight away and propped me right up with loads of pillows, at the same time trying to do some slow breathing exercises to calm my breathlessness. I didn’t feel the need to call the ambulance at the time and told Stef I would wait and see how I felt in the next half an hour and go from there.
I kept taking my pulse and eventually I started to feel more comfortable again, so decided that I would just see how it went and try and get some sleep as I just felt exhausted.
I had an uncomfortable restless night but nothing out of the ordinary and resisted being admitted. I did however let my CF team know first thing in the morning and gave them my word that the minute I felt like it again I would go straight up to Exeter and be admitted.
I’ve been on my oxygen ever since and barely budged off the sofa, Stef helps me walk to the toilet and even on my O2, I have to stop and sit down as my breathing is so difficult and painful, the minute I try and move my lungs get all worked up again. I’m even finding it hard to eat and chew dinner, having to gasp inbetween mouthfuls and it just doesn’t taste good!
I know I always praise my husband for being such a star but I really don’t think people have an idea of everything he does for me. The night I had my funny turn with my heart racing he was luckily off work but he’s been working night shifts ever since.
He’s done everything for me in the day as usual and before he goes to work, he’s brought me my iv’s and tablets, made me a snack and left me drinks all in arms reach so I don‘t have to move…
Part of my tooth came out tonight after tea (not happy, dentist phone call first thing Monday morning) and its left a big hole, so Im trying to drink milk instead of juice etc and my lovely hubby even brought down my mini fridge and put it in the living room just so I wouldn’t struggle out in into the kitchen on my own to get a drink this evening…
I’m getting so angry with myself that I can’t do things. I don’t want people feeling sorry for me, and I hate to be seen as a weak person. I love my hubby so much, I’m frightened of scaring him and hate myself for being so bloody useless.
I’ve been looking at people’s statuses on my facebook feed today and everyone’s writing about their 2012 goals, plans and hopes.
I don’t feel like I can do the same as I’m stuck in limbo. I can’t really do much physically myself at the moment and yet I don’t know what’s going to happen in the next few weeks or further into the future.
I live for holidays and things to look forward to and at the moment I have nothing except spending time with my special man when he‘s not at work.
I just hope round the corner soon that I can start making plans too……
It started on Thursday evening when all of a sudden I felt really unwell. I had a fever and my breathing was particularly unbearable, I was getting the same tummy cramps I had been getting but I could also feel and hear my heart beating incredibly fast in my chest, like it was about to explode.
I just couldn’t get comfortable, and sat on the edge of the sofa terrified to move, reason being I have felt like this once before.
Back on Boxing day in 2008, when I spent Christmas at my mums as I had been unwell and hadn’t got my carer at the time. I was rushed into hospital by ambulance and my heart rate was racing at over 170 beats per minute. They had to inject me three times in the foot to try and get it to slow down, after the third stab, it started to decrease but I had to stay in, much to my protest… With one thing and another, I actually ended up going into intensive care and then back onto my chest ward and was there for a total of four months…
Proberly one of the most scariest times of my life so it goes without saying why I was so frightened the other night that it maybe happening again.
I took my pulse and Stef got my oxygen which I put on straight away and propped me right up with loads of pillows, at the same time trying to do some slow breathing exercises to calm my breathlessness. I didn’t feel the need to call the ambulance at the time and told Stef I would wait and see how I felt in the next half an hour and go from there.
I kept taking my pulse and eventually I started to feel more comfortable again, so decided that I would just see how it went and try and get some sleep as I just felt exhausted.
I had an uncomfortable restless night but nothing out of the ordinary and resisted being admitted. I did however let my CF team know first thing in the morning and gave them my word that the minute I felt like it again I would go straight up to Exeter and be admitted.
I’ve been on my oxygen ever since and barely budged off the sofa, Stef helps me walk to the toilet and even on my O2, I have to stop and sit down as my breathing is so difficult and painful, the minute I try and move my lungs get all worked up again. I’m even finding it hard to eat and chew dinner, having to gasp inbetween mouthfuls and it just doesn’t taste good!
I know I always praise my husband for being such a star but I really don’t think people have an idea of everything he does for me. The night I had my funny turn with my heart racing he was luckily off work but he’s been working night shifts ever since.
He’s done everything for me in the day as usual and before he goes to work, he’s brought me my iv’s and tablets, made me a snack and left me drinks all in arms reach so I don‘t have to move…
Part of my tooth came out tonight after tea (not happy, dentist phone call first thing Monday morning) and its left a big hole, so Im trying to drink milk instead of juice etc and my lovely hubby even brought down my mini fridge and put it in the living room just so I wouldn’t struggle out in into the kitchen on my own to get a drink this evening…
I’m getting so angry with myself that I can’t do things. I don’t want people feeling sorry for me, and I hate to be seen as a weak person. I love my hubby so much, I’m frightened of scaring him and hate myself for being so bloody useless.
I’ve been looking at people’s statuses on my facebook feed today and everyone’s writing about their 2012 goals, plans and hopes.
I don’t feel like I can do the same as I’m stuck in limbo. I can’t really do much physically myself at the moment and yet I don’t know what’s going to happen in the next few weeks or further into the future.
I live for holidays and things to look forward to and at the moment I have nothing except spending time with my special man when he‘s not at work.
I just hope round the corner soon that I can start making plans too……
Wednesday, 11 January 2012
Clinic & Plan Of Action!
I had clinic today and had many issues to bring up with them since last seeing my Cf Team just before Christmas Eve.
I had my gripper accessed and have started a fortnights course of iv’s. Colomycin & Tazocin. Mereopenon is usually the only iv that tends to make a difference to my chest, but as I have been on it so many times right up until Christmas, my consultant didn’t want to risk me becoming resistant to it.
My Iv's
My weight was 50.4kg and I tried one attempt of lung function which was an absismal 0.74 (around 18-21%) which really took it out of me.
My physio made me stand up and attempt to walk with the sats monitor on, I made it just over a metre before coughing my guts up and needing to sit back in my chair. My heart rate rocketed and sats dropped, so the team have decided now that although I have my oxygen at home, it is definitely needed on exersion, when I move to the bathroom / kitchen or leave the house, and have ordered a small liquid oxygen cyclinder to have 4 hours worth of O2 a day when I’m out and about.
As for my tummy problems, there is only a small chance that it could be one of the bugs going round. I’m going back up next Wednesday and will have to do a ‘sample’ if I continue to have bad pains etc. For now, I’m increasing my creon enzymes which I take with my food to see if that helps.
I’m also starting some more ventolin nebulisers rather than just taking the inhaler. (the other nebs Cfers usually have such as hypotonic saline & Dnase really irratate my chest so I don’t have them)
When I go back up next week, I’m seeing my physio again and taking my V Pap machine with me to see if the pressure needs altering. This machine is what I use for physiotherapy, it forces air into your lungs as you breath in from the mouthpiece. Similar to what you would have seen on Kirsties documentary, that horrible mask strapped to her face to give her lungs a little rest and aid her breathing, I’ve had this too, but my V Pap is through a mouthpiece and not used at night whilst I sleep, purely for physio purposes.
An exhausting day, but over all quite a good one where a lot was talked about and resolved.
It’s two weeks today I will be in Harefield. I’m really nervous now, just scared about what they will say. I think we can safely say that I haven’t improved at all since I was seen in November, if anything I’m worse.
We’ll just have to see what happens on the day….
Tuesday, 10 January 2012
Feeling like a hermit…
Well I’ve not written for a wee while and this is for two reasons.
One being, I have been quite poorly (although this wouldn’t stop me writing as I find it’s one of the best things to do when I’m feeling low) and the other is that my laptop had been in a shop for repair, which I have now got back!!
This will only be a short blog as I’m going up to Exeter hospital tomorrow so will be able to let you know what happens after the appointment, but I thought I’d just write and tell you what I’ve been doing the last week….
The answer to that, is, FUCK ALL!!!
My husband was really poorly over the New Year with flu and tonsillitis, and a few days later as he started seeing the back of it, I became full of flu myself. Which to be honest was bound to happen. I have felt bloody rotten and quite sorry for myself which I hate to do!!! It went straight onto my chest and I’ve been unable to do the simplest tasks such as make a drink for myself.
It’s hard enough having two shitty lungs that are full of crap and won’t let you breathe, but to have a completely blocked nose as well, oh my god, I think it’s one of the worst feelings in the world. I didn’t budge from the sofa for pretty much the week and I haven’t seen outside of my front door for days…
My husband, as always, as been incredible, dosing me up with lemsips, cooking my dinner, doing the dishes and washing my hair and dressing me, there is just no end to his chores!!
Thankfully I’m see seeing the back of the flu now but for the last week my tummy has been incredibly painful. As I mentioned in the last blog, I did have a blockage, which after a few days of being careful what I ate and shoving copious amounts of Movicol down my peg I managed to unblock… (Pleasant!) But now, if anything I am going too much, I’m getting really horrendous tummy pains after I eat and through the night.
I’m not sure what this is, but think it may be something to do with my creon. The enzymes I have to take with my food to help my absorb the nutrients. I usually take ten tablets with a meal, but I don’t think this is enough now and could be a reason why I’m getting so much pain and needing the toilet so often.
Although I hate the place I’m actually looking forward to seeing my CF Team and getting my problems sorted out….
Only 2 weeks til I’m back to Harefield too, scary!!
Hope you all have a good week and I’ll keep you posted with any news. xx
One being, I have been quite poorly (although this wouldn’t stop me writing as I find it’s one of the best things to do when I’m feeling low) and the other is that my laptop had been in a shop for repair, which I have now got back!!
This will only be a short blog as I’m going up to Exeter hospital tomorrow so will be able to let you know what happens after the appointment, but I thought I’d just write and tell you what I’ve been doing the last week….
The answer to that, is, FUCK ALL!!!
My husband was really poorly over the New Year with flu and tonsillitis, and a few days later as he started seeing the back of it, I became full of flu myself. Which to be honest was bound to happen. I have felt bloody rotten and quite sorry for myself which I hate to do!!! It went straight onto my chest and I’ve been unable to do the simplest tasks such as make a drink for myself.
It’s hard enough having two shitty lungs that are full of crap and won’t let you breathe, but to have a completely blocked nose as well, oh my god, I think it’s one of the worst feelings in the world. I didn’t budge from the sofa for pretty much the week and I haven’t seen outside of my front door for days…
My husband, as always, as been incredible, dosing me up with lemsips, cooking my dinner, doing the dishes and washing my hair and dressing me, there is just no end to his chores!!
Thankfully I’m see seeing the back of the flu now but for the last week my tummy has been incredibly painful. As I mentioned in the last blog, I did have a blockage, which after a few days of being careful what I ate and shoving copious amounts of Movicol down my peg I managed to unblock… (Pleasant!) But now, if anything I am going too much, I’m getting really horrendous tummy pains after I eat and through the night.
I’m not sure what this is, but think it may be something to do with my creon. The enzymes I have to take with my food to help my absorb the nutrients. I usually take ten tablets with a meal, but I don’t think this is enough now and could be a reason why I’m getting so much pain and needing the toilet so often.
Although I hate the place I’m actually looking forward to seeing my CF Team and getting my problems sorted out….
Only 2 weeks til I’m back to Harefield too, scary!!
Hope you all have a good week and I’ll keep you posted with any news. xx
Tuesday, 3 January 2012
Two Years Of Happiness
Well, we’re in 2012 now and who know’s what it will bring…
Really hope it’s a good one for me and many of my friends and family.
New Years Eve was unexpectedly awesome, even though it was semi quiet, Stefan and I enjoyed a few drinks at home, our friend Darren came over and Stef’s little brother Shane with his friend Paul.
They then randomly took me in my wheelchair to our local around the corner to meet some more of Stefs family and see in the New Year. We weren’t out for long but it was nice to get some fresh air and the atmosphere was a happy and drunken one!!
We didn’t get to bed until 4.30am at which point my husband decided the alcohol he drank should no longer be in his body so preceded to throw up every hour until midday on New Years Day - I don’t think he’ll be touching vodka and jager for quite a while!!!
I was so grateful to have had spent Christmas & New Year at home, my chest is still not at all well, Stef is still having to wash my hair & dress me and I think now after just over a week off iv’s it’s time to resume them again.
However, my tummy is now playing up too.
I suffered from meconium ileus when I was a baby (blockage of the bowel) and had an operation to remove part of my intestine. This was how I was diagnosed with Cystic Fibrosis at six week’s old in Bristol Hospital.
Since then I’ve suffered with awful blockages and more often now I’m older.
I take several laxative medication a day just to make me go to the toilet once a day. Senna, Sodium Docsuate & Movicol. When I start feeling my bowels are sluggish and I’m feeling bloated, I have to increase my Movicol dose‘s, and often end up using Klean Prep or Gastrografin which if I’m lucky will flush out my bowels completely and this I can do at home (not very pleasant as you can imagine!)
If all this fails to work though, I have no option but to be admitted. If my tummy is blocked, not only do I look like I’m hiding three basketballs underneath my clothing, but I’m in excruciating pain and if I eat or drink, because it can’t go anywhere past my tummy it comes straight back up - usually with a lot of green bile too.
I had a very bad episode last year, and was in hospital for a fortnight. The team were trying everything they could, I was back and forth to endoscopy and theatre, having cameras put up and things going down… It’s a long standing joke that Kirstie & Neil (CF friends) take the piss out of me for having had one of my consultants fingers up my arse - Embarrassing for many, but I just have to grin and bare it, CRINGE!!
Thankfully, after trying many things, the blockage finally dislodged and I didn’t have to go to theatre, much to mine & my CF Teams relief.
I get really anxious each time it happens, so have to be on top of it 24/7
Anyway, enough of the boring stuff!
Tomorrow (4th January) I’m celebrating two years of being with Stefan.
I can’t believe it has gone by so quickly and yet I feel like I’ve been with him for so much longer and didn’t know what the hell I was doing with my life before we got together.
I remember it as if it was yesterday. Being in my brothers year at school, I’d always known him or ’known’ of him, but our paths didn’t really cross until December 2009 when I was in the pub (surprise!) and we got talking.
I thought it was just abit of harmless fun, we exchanged numbers and on New Years Eve we had a kiss but I thought that’s as far as it would go until he asked if he could cook for me…
On 4th January we had our very first date, I went to his house and he cooked me a curry. We got on so well, I never realised just how much we would have in common. I admired the way he looked after his little brothers, he was so mature, understanding and caring. He restored my faith in men and in love.
I was in a very bad place when we met and I know it sounds corny, but I really can say he was my knight in shining armour. We’ve not looked back since and already gone through so much together. I can honestly say the last two years have been the happiest of my life despite being so poorly.
This time last year we were planning our wedding, (Stefan proposed on Valentine’s Day in 2010 much to people‘s complete shock!) and now we’re six months into our wonderful married life.
It still kills me to think that I can’t give him children, but I am so lucky to know I have actually found my soul mate. His family are a massive support too, and although the future is unforeseeable, I pray everyday I can spend as long as I can with the man of my dreams.
I thank you everyday from the bottom of my heart Stefan, you have completed me in every sense of the word and made me a better person.
I love you unconditionally and will do forever, thank you for giving me the best two years of my life yet. xx
He’ll kill me for these piccies but thought I’d post to make you smile xxx
Really hope it’s a good one for me and many of my friends and family.
New Years Eve was unexpectedly awesome, even though it was semi quiet, Stefan and I enjoyed a few drinks at home, our friend Darren came over and Stef’s little brother Shane with his friend Paul.
They then randomly took me in my wheelchair to our local around the corner to meet some more of Stefs family and see in the New Year. We weren’t out for long but it was nice to get some fresh air and the atmosphere was a happy and drunken one!!
We didn’t get to bed until 4.30am at which point my husband decided the alcohol he drank should no longer be in his body so preceded to throw up every hour until midday on New Years Day - I don’t think he’ll be touching vodka and jager for quite a while!!!
I was so grateful to have had spent Christmas & New Year at home, my chest is still not at all well, Stef is still having to wash my hair & dress me and I think now after just over a week off iv’s it’s time to resume them again.
However, my tummy is now playing up too.
I suffered from meconium ileus when I was a baby (blockage of the bowel) and had an operation to remove part of my intestine. This was how I was diagnosed with Cystic Fibrosis at six week’s old in Bristol Hospital.
Since then I’ve suffered with awful blockages and more often now I’m older.
I take several laxative medication a day just to make me go to the toilet once a day. Senna, Sodium Docsuate & Movicol. When I start feeling my bowels are sluggish and I’m feeling bloated, I have to increase my Movicol dose‘s, and often end up using Klean Prep or Gastrografin which if I’m lucky will flush out my bowels completely and this I can do at home (not very pleasant as you can imagine!)
If all this fails to work though, I have no option but to be admitted. If my tummy is blocked, not only do I look like I’m hiding three basketballs underneath my clothing, but I’m in excruciating pain and if I eat or drink, because it can’t go anywhere past my tummy it comes straight back up - usually with a lot of green bile too.
I had a very bad episode last year, and was in hospital for a fortnight. The team were trying everything they could, I was back and forth to endoscopy and theatre, having cameras put up and things going down… It’s a long standing joke that Kirstie & Neil (CF friends) take the piss out of me for having had one of my consultants fingers up my arse - Embarrassing for many, but I just have to grin and bare it, CRINGE!!
Thankfully, after trying many things, the blockage finally dislodged and I didn’t have to go to theatre, much to mine & my CF Teams relief.
I get really anxious each time it happens, so have to be on top of it 24/7
Anyway, enough of the boring stuff!
Tomorrow (4th January) I’m celebrating two years of being with Stefan.
I can’t believe it has gone by so quickly and yet I feel like I’ve been with him for so much longer and didn’t know what the hell I was doing with my life before we got together.
I remember it as if it was yesterday. Being in my brothers year at school, I’d always known him or ’known’ of him, but our paths didn’t really cross until December 2009 when I was in the pub (surprise!) and we got talking.
I thought it was just abit of harmless fun, we exchanged numbers and on New Years Eve we had a kiss but I thought that’s as far as it would go until he asked if he could cook for me…
On 4th January we had our very first date, I went to his house and he cooked me a curry. We got on so well, I never realised just how much we would have in common. I admired the way he looked after his little brothers, he was so mature, understanding and caring. He restored my faith in men and in love.
I was in a very bad place when we met and I know it sounds corny, but I really can say he was my knight in shining armour. We’ve not looked back since and already gone through so much together. I can honestly say the last two years have been the happiest of my life despite being so poorly.
This time last year we were planning our wedding, (Stefan proposed on Valentine’s Day in 2010 much to people‘s complete shock!) and now we’re six months into our wonderful married life.
It still kills me to think that I can’t give him children, but I am so lucky to know I have actually found my soul mate. His family are a massive support too, and although the future is unforeseeable, I pray everyday I can spend as long as I can with the man of my dreams.
I thank you everyday from the bottom of my heart Stefan, you have completed me in every sense of the word and made me a better person.
I love you unconditionally and will do forever, thank you for giving me the best two years of my life yet. xx
He’ll kill me for these piccies but thought I’d post to make you smile xxx
Stefan trying to make me laugh with a cheesestring tash in hospital!
Stef after a hard day's roofing!
Our first family party when we got together (January 2010) Check out the roid face - MOON!
Stef & I now, New Years Eve 2011
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