Sunday, 21 August 2016

Our Kendall holiday to Suffolk!

I made it to the holiday! And it was just what the doctor ordered! It was with all the Kendall side of the family (my dad's side), so 14 of us and 2 dogs in a beautiful 3 storey country house with an outdoor heated pool, a tennis court and acres of garden for the dogs to run around in. We were extremely lucky with the weather too, which was beautiful all week- how very un-British of it.
The house

The pool

The gardens

The dining area

One of the living rooms

We did various activities such as visiting a model village, the sea side, the pier amusements; some of us visited a castle, and Alex and Tim went fishing for a day. We also enjoyed the amenities of the house and just being together as a family hanging out, doing jigsaws, eating meals, watching some olympics, playing tennis and going in the pool and having a photo competition at the end of each day. For me, it was perfect! There's nothing more I could have needed or wanted from my family holiday.

Al trying to win me a teddy at the pier amusements

Jigsaw

Mama having a float!

Me, Al and Barney at the model village

Barney at the model village

On the way down to the beach

Me and Abi in the pool

The castle

Me and my cousins splashing in the pool

Had my hair braided!

Eating yummy meals

It was lovely for Alex to have a bit of a break too from the constant caring role he has to play. With 12 other people around, he could have lay ins and some time to himself to chill and have fun and not have the burden of doing it all. Of course, my family help as much as they can when we are home too, but my parent's said it was a shock to them to see me on this holiday and the amount of help I am needing these days. It's only been the last 6 months where the caring role has really needed to be upped as much as it has, but a lot has changed.

As we were on the second floor of the house, I woke up each morning, did all my meds, nebs, physio, got dressed, ate breakfast etc upstairs before coming down as there was no way I was getting back up the stairs again until bedtime. I managed to get down each day before midday, which was good. Then I could enjoy the day with my family and forget all about CF :D

We had a yoga instructor come to the house on the Monday to teach us some yoga in the garden. It was great for my physio and felt brilliant opening up my body and stretching out my back and chest. I am definitely looking into continuing with it and the teacher gave me some advice on what sort of classes I could attend to help with my health.

Yoga class!

My aunty Lisa wanted to recreate some old photos of us cousins, they came out quite well! 



We have had the order of this one mixed up over the years! Think we can finally remember it now :D

The week flew by and I was gutted when it came to an end! Back to reality now, hospital appointment on Tuesday, but I am feeling quietly confident that I won't need to stay in this time. In my head though,  I can escape all of that and keep all the happy, happy memories of my wonderful family holiday at the surface <3 <3 <3 









Until next time! xo 

Tuesday, 9 August 2016

EUREKA!

Been in a week today. Feeling better than I did this time last week, which is good. But other than that it's hard to tell, it's been so long since I've felt absolutely wonderful I've forgotten what it feels like!

So after all this time, I THINK we have finally figured out what the problem has been: a fungal infection called Aspergillus. It's quite common in CF patients, I believe. I have been going downhill since Jan/Feb time and haven't been able to pick myself back up in terms of numbers in my lung function. So I re-read blogs, my diary, even went back through Facebook, just to see if I could pin point anything that could have caused my decline. Dr Orchard did the same with going through results of blood tests etc.

The next paragraph of this blog will be numbers and stuff and me trying to explain it, so if that sort of thing bores you, maybe skip this part haha. I know my family will probably appreciate the numbers and it will save me trying to remember it all and repeat it over and over to everyone :)

Sooo.... the blood results: There is one called an IGG, which is the measure for the aspergillus infection in the blood. In "normal" people anything over 40 is a concern; in CF patients, anything over 100 is a concern (although Chris said that he is unsure where the "100" came from and it could have been plucked from thin air!) In Feb, it was 195, then came down a bit in between then and May where it went up again to 192. My last blood results showed it is coming back down and is currently at 126. I am on anti fungal IV meds at the moment. My CRP, which is the infection levels in the blood were 42 when I came in last week, which isn't extortionately high considering back in May they were 121. However, they are now at 24, which is great as the aim is under 10 so I am getting there and Chris said it's the lowest they have been all year. This measurement is more for the pseudomonas and on/off serratia that is in my lungs, I believe. Finally, there is something called ESR, which I think is the inflammation levels in my blood. They are 16, which apparently is low. I don't know much info about this number and what is high/low.

The next steps are to carry on fighting the fungal infection. I am currently on Caspofungin IV and once that course has ended I will be on oral antifungals for a long time. Chris said he doesn't know how much improvement I will make, but we can only hope for the best.

I asked if there is anything I can do in my home to reduce the possibility of it happening again. So far my family have searched the house for any mould, thrown out all my towels, tea towels, bed linen, duvet, pillow, anything that could harbour fungus really. Chris reassured me that, as good as it is to keep those sort of things fresh and clean and to renew every so often, these things are unlikely to have caused the infection. Aspergillus is an airborne fungus that everyone breathes in almost daily. You are likely to find it in hay, compost and flowering trees. It was just unfortunate that I inhaled it one day and it decided to take root in my lungs!

The good news though, is that I should still be able to go on my holiday at the end of the week :D I won't have the definite "OK" until Thursday, but as long as I don't decline I should be alright. They have started a 3 day course of IV steroids, as opposed to the oral steroids I have been on for a few months. Hopefully this intense course will give me that extra boost to fight this infection once and for all. We will repeat bloods and lung function on Thursday too. After the holiday, the plan is for me to come to clinic as an outpatient to see how I'm getting on.

I would love to be able to say a long term plan, but at this stage it's sort of day to day, week to week time frames. I have had to put my lovely dog grooming business on hold, which has been a horrible step. Other than the helpfulness of a bit of an extra income, I miss my clients and their dogs, the independence, even the workout of bathing a dog haha. It's very frustrating and I hate letting people down. I just hope that in a few months time I will have built up the lung function, strength and stamina to reopen.

I have, as ever, been very lucky to have visitors, phone calls and well wishes from friends, family and neighbours. Without the kindness and thoughtfulness of you all I wouldn't be as happy and positive in my mood as I am. You pick me up when I'm down and these past few months have probably been the hardest of my life so far, emotionally and physically. It's easy to get caught up in all things health when you're in hospital for a long time and not seeing much improvement; so it's so, so helpful just to have a chat about something other than hospitals, lung functions, numbers etc and take your mind off it, and remember who you are as a person and what makes you you. Talking about dog grooming or having a girly gossip about something we saw on Facebook or watching old videos of belly dancing...  anything that just reminds me that it's not all CF, CF, CF and I do have a life other than this hospital and it's something I want to get back to ASAP! So THANK YOU to you all, you may not even realise you have helped me, but you have <3

Until next time! xo

Wednesday, 3 August 2016

The last few weeks

I managed to escape the hospital after 5 days and return home on full time oxygen and home IVs. I LOVE being home! It's my favourite place in the world and I'm always happiest there with my family and animals around me <3 I won't lie, it was a struggle. Being on the O2 24/7 has it's challenges such as being almost like a dog on a lead lol; having to ask Alex to go and "turn me up" before I start walking, and getting out the house took forever with poor Al having to make about 4 trips to the car getting all my equipment, bags, dog, me etc in the car. But we managed it :) I didn't go upstairs once in the time I was home, which is something new and not welcome at all! We set up the sofa bed and made it into the biggest, most cotch nest with a million pillows and puffy duvet- it was so comfy.


Me and the most wonderful, most selfless man in the world <3

During my time at home I managed to get my charity hair cut done :D My mama treated me to the hairdressers appointment at Fresh Look in Stoneleigh, Epsom where Katie did an excellent job! I needed to have at least 17cm off and we managed to get 27cm off for The Little Princess Trust. Hopefully my hair will help make a little child happy <3


video

I was also out for my daddy's birthday, which was great.

I had my end of IV appointment yesterday and I asked if my parent's could come with me as I felt as though I needed them there this time. Al usually takes me and my parent's are usually at work, but my dad has finished work now and my mum was able to get a day off, thankfully. I wasn't having a good morning and by the time I got to hosp I was exhausted. I don't know what my lung function came out as but I know it wasn't good and to cut a long story short, I'm back in. Currently on MADU again as the CF unit is full, but hoping to move back there some point today. I'm on some different IVs including a new one I haven't had before. Let's hope a miracle happens and I bounce back to how I was 6 months ago and stay like that forever and ever!!!!!!

I have my family holiday to Suffolk in just over a week, so I'm hoping I will be well enough for that too :)

Until next time xo