Just a quick update for friends and family. As most will know from my Facebook status I was readmitted to Frimley yesterday. I woke up and came downstairs to start my morning routine of meds/nebs/brekkie/feed the animals etc etc and found myself extremely out of breath; more so than could be expected. I took my time with lots of rests in between each treatment/chore I needed to do, but I wasn't recovering. I fought my way through my treatments as I never not do them no matter how ill I feel; I would only feel worse if I were to skip them! Then I curled up on the sofa to rest.
Alex came down shortly after and could see I wasn't doing great. As ever, he selflessly put my needs first and did all he could to help me. After a while, he suggested we checked my O2 levels, which were very, very low. This explained why I was so breathless. So Al took me upstairs to the oxygen and we put it on 4L and I rested in bed. Around 11am we re-checked my O2 levels and they were still on the low side, so I asked Al to call Frimley, as I was too breathless to talk, to see what we should do. They asked us to come up to the unit.
Once there I had an x-ray to check my lung hadn't collapsed and bloods done to check my infection levels. Luckily, my lungs were OK but my infection levels were slightly up at 68. As I still was needing oxygen too, it was decided I should stay in. I didn't take this news well, I was so upset! I just couldn't believe it; less than a week ago I had been here and all was looking like it was going in the right direction, then boom just one random breathless morning and I was back in. I just kept thinking I can't do this again, not this soon, not another 6 and half weeks of being stuck and getting nowhere. I don't think the fact that I was exhausted from the heat and the breathlessness helped my emotions. After a while though and after speaking (well more like crying) to the nurses, my mum, Ali, the world haha, I woman'd up we just got on with what we needed to do. Unfortunately there were no beds on the CF Unit, so I am visiting another new part of the hospital for me: G1. It's an isolation unit and I have my own room still, which is good.
Today I have been much less breathless, thankfully and I am DETERMINED not to stay any later than Monday. I saw Dr Orchard and he doesn't want me in here any more than I do- in the nicest way possible! He reckons it could be due to the extreme heat we've had. Whilst I'm here though, I have started IVs to help get my CRP back down and fight off any starting infections and all being well, I will go home on IVs on Monday. Sadly I've had to miss my daddy's surprise leaving do/retirement party and it looks as though I'm going to miss my friend's baby shower and another friend's daughter's Christening, plus cancel my charity haircut and my dogs again! It's always the way isn't it :/
Fingers, toes, eyes -and anything else you can cross- crossed that this will be it for admissions this summer, or even year! Please please please!
Until next time xo
Thursday, 21 July 2016
Sunday, 17 July 2016
My holiday from the hosp, appointment and everything in between!
Oh it seems so long since I last blogged; I've been meaning to blog for a few days but just needed to find some time to sit down and do it. The "holiday from the hospital" has been brilliant, I have mainly been getting back into my usual routines and building up strength and stamina. I have seen friends and family and have started dog grooming again a couple of days a week. I've had to limit myself to my small, easier dogs but it has been wonderful to get back into it. I've loved just doing the normal day to day things such as feeding the animals, tidying the house etc, it's funny how you miss these weird things. I have had to slow down and have a lot more rests than I'm used to, but I need to listen to my body otherwise I risk going backwards and I really, really don't want to do that!
In the 2 and a half weeks we only had one hiccup, which was last Tuesday evening. I had been to belly dancing and was eating my dinner when I could feel I was about to cough up blood. It sounds weird to know that it was about to happen, but what I have found is that when it does, it's like you feel like need to cough but instead of being able to control a cough or suppress it, you're out of control and the blood is just coming up on it's own without having to cough. Not sure if that makes sense? Anyway so I rushed to the bathroom and blood just kept coming up. I know that panicking only makes it worse as it increases your heart rate and blood flow, so I tried to stay as calm as I could and managed to shout for Alex in between coughs. He'd only thought I was coughing normally at this point, so was extremely shocked to come in and see all the blood everywhere. Al had never seen it that bad before and I think it definitely shocked him and he called for an ambulance and then my parents. Bless him, he was definitely in shock and I can imagine panicking a lot; I felt terrible putting him in that situation but he was an angel, as ever, and got me a chair and cleaned me up. The ambulance took about 20 mins to get to us and luckily by that time the bleed had clotted and I was coughing up a lot, lot less. I was so relieved. I had my parents and Al with me and the ambulance men were wonderful. As it had stopped and I had all the meds that I needed to take in these situations- transamic acid to make your blood more sticky and easier to clot to reduce the chances of it happening again- they were happy for me to stay at home once they had done all the obs and checks they needed to. If I had still been coughing up fresh blood when they had got to me, I would have gone in, but I felt safe enough to stay at home. Al and I slept downstairs on the sofa bed that night and I cancelled my dog for the next day and all my plans; I needed to take it easy.
As that was just 3 days before my hospital appointment to see how I was getting on at home, I was very nervous and on edge for the rest of the week. I so badly didn't want to have to go back in to stay and felt so disappointed that I had had that episode of bleeding. I just wanted to prove that I could manage at home but felt that I had ruined my chances of staying out.
The Friday came and my lovely aunty and cousin very kindly took me to my hospital appointment as Alex was still waiting for his driving licence back after being a year seizure free. I was super nervous the whole morning. We got there and my sats were 92%, which is what they were aiming for so that was a good start. Then my weight had gone up from 51kg to 53.1kg, even better. Then.... my lung function had gone UP!!!!! I couldn't believe it! Suddenly I felt like the happiest girl in the world :D My FEV1 had gone from 38% to 41%- yessss I'm in the 40's! My FVC was 88% too, which is pretty much my baseline so they were very happy with that. All that hard work is paying off.
They weren't even too worried about the bleeding. They said that it isn't surprising that it happened as my lungs are still very inflamed and will be sensitive at the moment and I should just do what I did before if it happens again. This was very reassuring to hear. I am to up my physio a bit more to try and increase my lung function even more. My sugars have been all over the place due to the steroids, so I might be starting a long acting insulin as well as a quick acting one to try and control them better. Everything else is staying the same to try and increase my lung function more, but it looks like it is finally heading in the right direction! So happy :D Then to top it all off, Alex called whilst I was at the hosp to say that he has his licence back; such a brilliant day haha. This is has taken so much pressure off us as I have been finding driving so tiring and now Al can do it all again.
I have another app in 2 and half weeks, so fingers crossed I can maintain or improve even more.
Our family and friends have been so supportive and kind to me and Al these past few months, we are eternally grateful <3 Thank you xxx
Enough about me! It seems to be the charity season at the moment and I want to use this blog to spread awareness and hopefully help raise some money for different charities. There is so much heartache in the world at the moment and it is awful to hear the things that are taking place. Let's show a little love and support and bring smiles to people's faces. We may not be able to solve all the problems of the world, but if we can help just one person, it will be worth it!
My uncle is running the Great North Run for the Cystic Fibrosis Trust and his link to his page is:
https://www.justgiving.com/fundraising/Mark-Hashim
One of my bestest ever friends Ashley and her cousin are skydiving for Lupus UK and their link is:
http://www.doitforcharity.com/AshleyChapman
And I have decided to donate my hair to the Little Princess Trust charity. I've been due a chop, so may as well get some use out of the old locks! Hopefully getting it done this week. Anyone know of a good hairdresser, hook me up! :D
Until next time xo
My Alex's birthday
Al's birthday BBQ
Al's birthday BBQ
Al's birthday BBQ
Gorgeous flowers from one of my dog grooming clients
Pip and Poppy, 2 dogs I groom
Beautiful roses from my wonderful neighbour
Groomed my baby bear
In the 2 and a half weeks we only had one hiccup, which was last Tuesday evening. I had been to belly dancing and was eating my dinner when I could feel I was about to cough up blood. It sounds weird to know that it was about to happen, but what I have found is that when it does, it's like you feel like need to cough but instead of being able to control a cough or suppress it, you're out of control and the blood is just coming up on it's own without having to cough. Not sure if that makes sense? Anyway so I rushed to the bathroom and blood just kept coming up. I know that panicking only makes it worse as it increases your heart rate and blood flow, so I tried to stay as calm as I could and managed to shout for Alex in between coughs. He'd only thought I was coughing normally at this point, so was extremely shocked to come in and see all the blood everywhere. Al had never seen it that bad before and I think it definitely shocked him and he called for an ambulance and then my parents. Bless him, he was definitely in shock and I can imagine panicking a lot; I felt terrible putting him in that situation but he was an angel, as ever, and got me a chair and cleaned me up. The ambulance took about 20 mins to get to us and luckily by that time the bleed had clotted and I was coughing up a lot, lot less. I was so relieved. I had my parents and Al with me and the ambulance men were wonderful. As it had stopped and I had all the meds that I needed to take in these situations- transamic acid to make your blood more sticky and easier to clot to reduce the chances of it happening again- they were happy for me to stay at home once they had done all the obs and checks they needed to. If I had still been coughing up fresh blood when they had got to me, I would have gone in, but I felt safe enough to stay at home. Al and I slept downstairs on the sofa bed that night and I cancelled my dog for the next day and all my plans; I needed to take it easy.
As that was just 3 days before my hospital appointment to see how I was getting on at home, I was very nervous and on edge for the rest of the week. I so badly didn't want to have to go back in to stay and felt so disappointed that I had had that episode of bleeding. I just wanted to prove that I could manage at home but felt that I had ruined my chances of staying out.
The Friday came and my lovely aunty and cousin very kindly took me to my hospital appointment as Alex was still waiting for his driving licence back after being a year seizure free. I was super nervous the whole morning. We got there and my sats were 92%, which is what they were aiming for so that was a good start. Then my weight had gone up from 51kg to 53.1kg, even better. Then.... my lung function had gone UP!!!!! I couldn't believe it! Suddenly I felt like the happiest girl in the world :D My FEV1 had gone from 38% to 41%- yessss I'm in the 40's! My FVC was 88% too, which is pretty much my baseline so they were very happy with that. All that hard work is paying off.
They weren't even too worried about the bleeding. They said that it isn't surprising that it happened as my lungs are still very inflamed and will be sensitive at the moment and I should just do what I did before if it happens again. This was very reassuring to hear. I am to up my physio a bit more to try and increase my lung function even more. My sugars have been all over the place due to the steroids, so I might be starting a long acting insulin as well as a quick acting one to try and control them better. Everything else is staying the same to try and increase my lung function more, but it looks like it is finally heading in the right direction! So happy :D Then to top it all off, Alex called whilst I was at the hosp to say that he has his licence back; such a brilliant day haha. This is has taken so much pressure off us as I have been finding driving so tiring and now Al can do it all again.
Our first drive- to the chemist haha
Celebratory meal with Alex, my brother, sister and Emma, Tim's girlfriend
Emma is well and truly part of the family now! :D
Enough about me! It seems to be the charity season at the moment and I want to use this blog to spread awareness and hopefully help raise some money for different charities. There is so much heartache in the world at the moment and it is awful to hear the things that are taking place. Let's show a little love and support and bring smiles to people's faces. We may not be able to solve all the problems of the world, but if we can help just one person, it will be worth it!
My uncle is running the Great North Run for the Cystic Fibrosis Trust and his link to his page is:
https://www.justgiving.com/fundraising/Mark-Hashim
One of my bestest ever friends Ashley and her cousin are skydiving for Lupus UK and their link is:
http://www.doitforcharity.com/AshleyChapman
And I have decided to donate my hair to the Little Princess Trust charity. I've been due a chop, so may as well get some use out of the old locks! Hopefully getting it done this week. Anyone know of a good hairdresser, hook me up! :D
Until next time xo
Subscribe to:
Posts (Atom)