Monthly Gym Reports - August (THE START)

Exercise is really important post transplant. Not just for your lungs and general health but to build up all the muscle that has been reconditioned over the years spent unable to do very much.
You're also on steroids as part of your anti-rejection meds, steroids are muscle wasting. So it is vital that you try to keep your exercise up to help prevent this from happening.
I've been having a few gym session with Ruth my transplant physio but i have recently joined a gym. I'm wanting to keep an update on my blog of my process so i can see how far i have come!
I'm an absolute weakling and have been unable to exercise properly for years so prepare yourself to be very underwhelmed for the first few months! Ha.. :|
Here goes!!!

Start Weight: 54.6kg

Biceps: 9 inches
Thighs: 17.5 inches
Calves: 11 inches
Waist: 33 inches
Chest: 36 inches


TREADMILL:
The treadmill is probably were I get my biggest workout. Cardio is important for me but building up my stamina especially when walking is priority for me at the moment. I tend to walk on a flat level for 5 minutes at a pace of 4.5 I then incline the hill to 4% and continue walking at that 4.5 pace for 10 minutes.. I then pop the incline down to 2.5% and increase the speed to 5.5 for 5 minutes. I go up on the hill to 4% for 5 minutes at the lower speed of 4.5 and then slowly decrease the speed rate and the incline till I am walking at 4.5 on the flat level to finish off my 30 mins on treadmill.

BIKE:

i like to start off on the bike and come back to it at the end. I do just 8 minutes to warm up and then I head off to the treadmill. Once I have completed my little gym session, I jump back on the bike for 8 minutes for a little warm down. I'm not the biggest fan of the bike because I find it very uncomfortable but I do like the feeling I get in my legs!

WEIGHTS:

I go from the treadmill and head onto the arm weights to give my legs a little cool down. As I said before, I am a weakling and therefore, I manage just a 5kg weight on my arms for now. But I do 10 reps of each different kind of arm weights machines. 

STRETCHES:

Once I have completed the bike, treadmill and weights, I just walk over to the mats to stretch my muscles to prevent them tightening up. I get quite a lot of pain in my shoulders so I like to make sure I get a good stretch with them. 

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Post Transplant Life/Regime

MEDS/NEBS

Anti-Rejection:
I take Azathioprine, Program (FK) and Prednisalone steroids. Anti-Rejection are your most important meds. It's vital you don't miss these meds. It's what is suppressing your immune system enough to prevent rejection taking over your transplanted organs. They keep a check on your anti-rejection levels by taking blood samples. These samples are taken fairly regularly until you reach a stable level, then you'll be checked less frequently. It can be a struggle to find a good balance for a while due to a number of different factors. This is completely normal. Your body is healing and getting used to what will be the biggest shock to your system.

Prednisalone Steroids

Azathioprine

Prograf

Enzymes:
I have taken Creon enzymes since i was 13 months old and first diagnosed with Cystic Fibrosis. This is because the mutant gene that causes Cystic Fibrosis not only affects your lungs but it can affect your pancreas, digestive system, heart and liver. It affects your pancreas by disabling a natural occurrence where when food is eaten, enzymes are released that allow your body to take the nutrients needed from the food you eat and turn that into energy, fats, salts, vitamins and other things. This can send your digestive system loopy! It can swing from one extreme to the next! Constipation can be a regular thing for people with Cystic Fibrosis and in some cases, this can become a serious bowel blockage that needs urgent medical assistance and is unbelievably painful. It can quickly lead to needing surgery! On the other hand, it can give you the runs! Meaning a toilet becomes your best friend along with agonising stomach pains.

Stool Softner & Laxatives:
Since a scarily serious bowel obstruction i had in 2013, i have since been on some medication to try to help prevent that happening again. Sodium Decussate is a stool softener and that basically does exactly as it says on the tin. Softening the poop helps prevent constipation which therefore helps prevent a bowel blockage which then turns into a horrific bowel obstruction! Senna is a laxative that i use to help keep things moving regularly which again helps to prevent constipation. Together they make a beautiful couple and my digestive system continues to remain in working order i am happy to report!

Sodium Docusate

Senna

Supplements:
Vitamins are a group of tablets that are often apart of a Cystic Fibrosis patients daily medication. This is due to the fact that the vast majority of us are unable to digest our food properly without enzymes and therefore, unable to take out essential nutrients from the food you're eating. So they prescribe a variety of vitamins to help supplement any deficiencies. I'm currently on; Viatmins BPC which is a combination of vitamins, Cholecalciferol is a vitamin D supplement but it's very strong and therefore only taken once a week for me and finally, i take Calci-chew which is a calcium salt used to supplement calcium in the diet.
Before transplant and for a little while after i was using an overnight feed to help gain much needed calories. Before transplant i was on this all day 24/7 because i was hardly eating anything and it was my main source of nutrition. After transplant, i fed for the first month to maintain weight whilst my body recovered but my appetite got bigger and better and i now no longer use the feed as i am gaining weight successfully on my own, this is a huge achievement for me as i have battled to gain weight for many years now.
I still have my button, which gives me access to using the feed again if it is needed in the future. Some people post transplant still need the help of supplements such as feed or milkshakes etc so they still use a peg, button or NG tube to get the extra nutrients.

Nutrison Concentrated (Overnight Feed)

Vitamins

Proton Pump Inhibitors:
Yes, i did just google which group of drugs this capsule belongs to! Have you ever had acid reflux? This can cause heartburn or indigestion symptoms. Well 9 years ago, i started having a horrible and regular heart burn which would bring tears to my eyes. I never thought anything of it until i happened to mention it in a clinic appointment back in Boothall Childrens Hospital and they told me it sounded like i had Gastro-Esophageal reflux disease or in lamas terms, Acid Reflux. I was then whisked away to have an acid reflux test performed. After a long, emotional, sickening afternoon, they finally managed to pass a little tube down my nose, down my throat and sitting in my stomach. This tube would measure whether acid was escaping from my stomach and making it's way up to wind pipe which would be dangerously capable of getting into my lungs. I was useless at having this performed because my gag reflex is on point and i kept bringing the tube back up so it would literally go up my nose and back out of my mouth, horrible at 12 year old, let me assure you! Anyway i extremly reluctantly managed to get through a full 24 hours with this tube in, including a trip to A&E begging a doctor to get it out of me but he managed to convince me to continue. The results were in and it was true i did have this acid reflux and i was started on a drug called Omeprazole. Now post transplant, my omeprazole has been increased as the anti rejection meds can cause your stomach to become a little more upset and temperamental and acid escaping and taking a little holiday in these new lungs is a MASSIVE no no!!

Omeprazole

Other "Anti-" drugs:
Antibiotics have been a major part of my life as they helped me get through many infections and save my life. Post transplant i have been on both IV antibiotics and oral antibiotics. I'm currently on IV (Through a drip) antibiotics and i was on a high dose of oral antibiotics for a few months but that has been steadily reduced and i now take them on alternate days. Now my immune system is suppressed, my body is weaker and so antibiotics help give my body that extra little amour against bacteria wanting to invade! They're vital.
Anti-viral's were something i had never heard of until transplant and that antiviral was Valganciclovir.
As far as i am aware, this is to prevent a Virus called CMV from becoming active and making you feel very, very poorly indeed. I don't think you ever get rid of it once it has become active in your system as it is very resistant to everything. Valganciclovir is another vital tablet for me.
Anti-fungal was also a new type of drug for me post transplant. I'm currently on oral Itraconazole. I would prefer capsules or tablets as i am absolutely useless at tolerating oral solutions. I just bring them straight back up again and i'm not sure why but it's the way it has been since i was very young. Luckily for me, i still have my button inserted into my stomach so i can flush the oral medication straight into my tummy without tasting, swollowing or throwing it back up! YAY!
Anyway, pretty self explanatory again. Anti-fungals are used to help prevent or treat fungal infections and fungal infections are not what i want for my lungs!

Itraconazole (Anti-Fungal)

Septrin (Antibiotic)

Valganciclovir (Anti-Viral)

Insulin:
It's not uncommon for people with Cystic Fibrosis to develop diabetes. Sometimes, this can be controlled by diet or treated with insulin. I was diagnosed with Cystic Fibrosis related diabetes when i was 10 years old and was instantly places on insulin. Diabetes in Cystic Fibrosis is a category all on itself. It's not necessarily type 1 or type 2. It is very special and frustrating!! Our pancreas does produce insulin... it's just not enough and high blood sugars thrive or infection and infection thrives of high blood sugar so it's important that our diabetes is under control.
I was lucky enough to have a very mild case for the majority of my childhood and into adulthood, needing very little insulin and able to drink and eat as much sugar as i liked.
Then in 2014 i began needing insulin a lot more. I went from needing a long acting insulin once a day (which covered me for the full 24 hours) to needing long lasting insulin twice a day and also fast acting insulin before eating anything.
This helped for a little while but suddenly it rapidly changed and i was needing more and more but it was getting less and less controlled. It got to a stage where nothing we did helped and no amount of insulin improved my condition because it was a guessing game. So my CF & diabetes team decided it was time to try an insulin pump. One of my best decisions made! In November 2014 i began using an omnipod insulin pump and it has changed my life. It's made things to much easier, it's made my control brilliant and it's much less time consuming for me. The level they regularly check in diabetes patients is called HBA1C and mine has come down very smoothly and nicely thanks to the insulin pump.

Omnipod

Nebs:
Nebs have been a part of my life since i can remember. Technology has come a long way and they now have tiny portable devices that you can inhale your medication through within a few minutes! AMAZING! When i first did nebs as a child, you had to stick a massive white tube out of the window to prevent the household inhaling the medication too! It wasn't portable, it took up to 15-30 minutes and it was noisy and bulky. Now i take two different antibiotic nebulisers via a device called an E-Flow and it takes 2-3 minutes. I take Tobi nebs one month and then Colomycin nebs on the alternate month. I also have a neb called ipatropium which i use just before taking the antibiotic neb to open my airways and prevent a spasm caused by the other nebs. I'm currently also using hypertonic nebulisers which loosing sputum and make it easier for me to remove what's lingering in my airways and lungs.

E-Flow

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Transplant Clinic

I thought i would bring you along with me to a normal transplant clinic.
You aren't given a time at transplant clinic; it's literally first come, first serve.
So of course, the earlier you're there, the quicker you're seen, the faster you can get out and get on with the remainder of your day.
I prefer to set off at 7am so an early night is needed.
Wanting to be prepared the night before. I like to choose my clothes and lay them out my clinic bag.

Contents of clinic bag

In the clinic bag, we have my daily meds, itraconazole, syringe, blood pressure cuff and my tornaque. 

I get my normal bag ready, set my alarm and then head to bed. 

At 6:15am, my alarm goes off. Make up on, clothes on, make bed and downstairs for some breakfast. We set off at 7am and head onto the motorway to get to Wythenshawe. 

Entrance to the Transplant Unit

Tranplant Reception

In reception, i get given a number and then head off to x-ray and lung function.
The x-ray is just a normal chest x-ray. I have adapted the technique of wearing a wireless bra so choose to wear a sports bra and that saves a little bit of time having to change into a gown. Next up is lung function!

X-ray Waiting Room

Lung Function Entrance

Lung function entrance

Lung Function Room

It's here where you're weighed and perform 2 types of lung function tests to see the volume and capacity your lungs currently hold.

1st Test - You're told to breathe normally for a while and then it's a deep breath and a gentle sigh out with no force, till you've emptied your lungs. Then a big breath in. You do roughly three of those so they can get an average result. 

2nd Test - These ones are the fast ones. More normally breathing at first, deep breath in and then a fast and forceful huff out for as long as you possibly can till you're lungs are empty. Again you usually do three of those. 

You're all done at lung function so now you'll be heading back to clinic. 

The lung function unit is right next door to Pearce Ward (my CF ward) so if i have time, every now and then i like to buzz on to say hello to the ward nursing staff and physio's. 

Next up it's back to clinic to be seen by the Transplant Outpatient nurses. 

It's here that you'll have a chat about general health and state of mind. You report any problems to them or in my case have a leisurely chat because they're all so lovely and friendly. 

Blood samples are taken and your observations are recorded. You can then take your meds as you have to wait to have your bloods taken before having your tablets. That's because when taking bloods, they check lots of things like infection levels, white cell count, kidney functions and the levels in your blood of the meds your taking. That's to make sure you're having the right amount of anti-fungal meds and anti-rejection meds. 

Now you just have to wait to see the doctor who's usually just finishing off the ward round upstairs. 

One of the clinical rooms

There are a few little things dotted around the unit. I took a few photos of some of them that i like and find interesting.

Little wooden ornament with a crystal at the base

Bill Noble was a heart transplant patient who had won all these medals at the transplant games for swimming.

All these medals have been won by the transplant patients of Wythenshawe hospital at the transplant games

This is my absolute favourite and think the message is given beautifully.

The consultant usually comes off ward round at half 10-11ish. 

You're invited in to the room to discuss the latest goings on, how you've been feeling and any problems you have. They then usually check your x-ray and lung functions and compare them with previous ones that have been taken. They'll check your latest blood results and then chat about what they think is needing to be done if anything at all. 

Then you'll be given a sheet that you hand into reception to indicate when your next appointment is going to be. 

This little routine works well for me. Some people do things differently and it usually depends on what time you arrived at clinic and what time you took your meds the previous night that will determine in what order you'll go about your clinic appointment that morning. 

Hopefully with no problems you can leave clinic and get out of there fast ready to head off for some lunch or go home. That's a normal clinic appointment, sometimes bronchoscopies or both bronchoscopes and biopsies are combined into your clinic appointment. 

Later that night you will sometimes receive a phonecall off the outpatient nurses to tell you of any changes or concerns regarding the days earlier tests. I like to jot these changes down in my planner so i can keep a record for myself.  The nurses won't ring you if no changes are being made or there are no concerns raised. 

My latest clinic some could say wasn't the best but things are getting sorted now so i guess it depends how you look at it.
My infection levels had crept up ever so slightly than last week, my lung functions were down a little bit and my x-ray hadn't improved so it was decided i was to have a bronchoscopy the following morning and started on Oral antibiotics as well as home IV's.
The following day i went back to clinic for the bronchoscopy where they put a camera down your throat and into the lungs to have a look around, take pictures and then give your lungs what they call a 'wash out' and suction up all the sputum to clear you out.
Some people have no sedation for this but i prefer to have it! I can't imagine it is a pleasant experience without and i am certainly not brave enough to attempt it. My gag reflex is ridiculous so i guess it helps being away with the fairies to even notice.
I usually need a lot of sedation as for some reason my body likes to fight against it and even with the maximum amount of sedation i can still remember, struggling with the washes.
They're over before you know it though, thanks to that lovely medazalam sedation they use. Then you are kept in a recovery room to have your observations recorded over an hour. Once you have come back round and are showing no signs of problems, you're allowed back home but obviously need someone to go with you who can drive as you can't drive for 24 hours after.
Thanks for reading! 

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Dear Nan,

Dear Nan,
Where do i begin?
Can't believe you snuck off back to Tucker before i got to show you my big deep breaths in person. I made you a promise that you'd be the first person i visited when i got out of hospital and you made bloody sure of that didn't you!
You were the first person i visited.. just as promised.

I never got to see you since October due to ill health and hospital admissions but we spoke all the time on our phonecalls and if i couldn't get to the phone for whatever reason, you'd always leave me a voicemail..
"Hiya, it's only me love.. ya nan."
You kept me updated on the latest goings on in the family and i'd keep you updated on my own goings on. I miss those phonecalls but luckily for me, i kept your voicemails to listen to every so often. My personal favourite is the one where you're calling to let me know that i need to send my dad round to pick up some more cough sweets that you'd gotten me. Well you'd save yourself a fair few quid now nan because those cough sweets are no longer needed.

Well i best let you in on the goings on hadn't i?
I popped a tulip on your doorstep when i was let out for good. They're my favourite flowers so you're welcome! haha.
We went to the play at the coliseum, i'm not too sure you'd have liked it to be honest nan. It was slightly crude but very funny.
You'll be glad to know that i have taken up bingo although not at the Weavers on a thursday afternoon!
LITTLE FLO LIVES ON!!
I'm quite lucky although not for the past couple of week. Keep asking you for some luck and help but think you must be busy playing your own books in the bingo hall's up there.
The voicemail you left dad when i had my transplant kept playing over and over in my head. I was so excited to show you that you were right!
Wheelers are made of tough stuff. This year has certainly tried to test us all but we are plodding on!
If you happen to see that wonderful person who gave me this life i am living now.. will you please thank them and give them the biggest hug and maybe a game of bingo or two.

Things are on the up now nan.
Little Ivy Flo came along to show the family how to smile again.
Then little spud has popped up to show us that we can keep smiling now.

You & Our Roxie Lady

I was lucky enough to have one of your rings passed down to me, it's the purple one with a brilliant story behind it so it's very fitting with me being a story teller :)
I was petrified of something happening to it or loosing it so i have a special place for it now. You're ring is so precious to me and it's tied around your locket with specially chosen charms in so i have a little piece of you with me always.

My Nana Flo ring & locket

So here we are, i know you liked to read my blogs as i have a folder at home that you had in your little flat that kept all my blogs in someone had printed off for you to read and keep.
I think you liked the last blog i did for you and so wanted to write you another especially for your birthday! Don't worry i will print this off and add this to your collection! Me and JoJo are going through your diaries and typing up every bloody word you wrote.. it's taking a very long time nan but we will get there and you will be a best selling author with the true stories you have told. It's honestly opened my eyes seeing your life through your eyes and seeing your life before i was here and before any of your grandchildren were here. I never really knew just how hard your life was but what a woman you are! I am honoured to have the nickname little flo!

Big Flo & Little Flo

I feel so warm and lovely when i think of you or i am reminded of you. You're my diamond Nan. My queen and most importantly my little nan. Kiss sam and grandad for me. I miss you like crazy. I love you with all my heart forever.
Always yours...
Sophie Jayne
xxxxxxxxxxx

HAPPY BIRTHDAY NANA FLO !

Absolutely Beautiful.. My Nana <3 td="">

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Future Plans

At 22 years old, I have never had a job. Well... i worked as a waitress to help out at a pub on a couple of weddings, when i was 16 and i did a little bit of transcribing for a business called CodeBlue, owned by my uncle and family friend, Tony Kenny
I cannot wait to get my first real job. I haven't decided what it is i want to do with my life yet. So for now, i would be quite happy working in a shop. I'd love to work in a book shop somewhere.
Everyone who knows me knows my dream is to have my own sweet shop so i am currently hoping on winning the national at bingo!
I've gone through so many phases of what i thought i would want to do over the years. When i was younger i LOVED magic. My uncle Lee Lee would buy me magic sets for each birthday and christmas and we would play with them together. That was it for me, i wanted to be a magician when i got older and for years this was my ambition. I'm not quite sure what happened with it really but somewhere along the way, that dream got lost.
Next was a paramedic but that lasted all of one week as i saw the aftermath of a little old lady get hit by a car and i knew i would be absolutely useless in that situation.
Finally from the age of 14-18 i wanted to be a journalist or columnist. I obtained my love of writing after reading books, blogs and magazines. Once i started up my own blog, i realised it was something i was passionate about. I love to write, i love words and having my own blog gave me the freedom to write about what i wanted and when i wanted. It was this that made me realise i wouldn't make a very good journalist. I enjoyed writing what i wanted to write about and when i wanted to write about it but being told what to write about and having a deadline is something i would probably have to work on if it was what i chose to pursue.
Suddenly health took over and thoughts of jobs and careers were long gone from my mind.

Now it's something i am thinking about more and more and i simply have no idea. I do love writing and maybe that is something i could look into eventually but for the time being; a job in retail part-time while i get used to the lifestyle of a normal person with a job will be just lovely.

Moving out is high on my agenda too. I'm engaged and so would love to finally move out with shaun and start making a home of our own. Currently in the process of really tightening up my spending to save up but also to see just how much i can afford on a house or apartment.
My favourite room in a house is the bathroom. I just find that room to be so comforting and peaceful. I always have. I used to love nothing more that a hot bubble bath. I'm much more of a shower person now though. I'd just love a nice bathroom.
I have come to the conclusion that it's due to the fact that a bathroom/loo is a private place.
Interior design has interested me for so long, for a little while i considered looking into doing it as a career this was between the times of wanting to be a paramedic or journalist! I don't think i would be good enough but i get so excited thinking about buying homeware for the new house/apartment. I LOVE buying homeware. My favourite things to shop for apart from food obviously!

I am engaged and so of course after a job and a house. Our next venture will be WEDDING! We have lots of saving up to do! I'm not certain on what it is we want but i do have a few little ideas that are clogging my pinterest. I know we definitely don't want a church wedding as neither of us are religious. I'm excited to get planning but i know that isn't going to be anytime soon!

So to prevent the daydreams of weddings, venues and dresses; i am going to fill my free time by being the perfect godmother to my two boys!
One of which is still cooking in his mummy's belly. So until, he is ready to squish with cuddles when he's born... his mummy can fill his shoes for now. I guess technically he will be coming along too!
Maternity leave will be coming up real soon for Emily and i am gonna be such a good maternity buddy. A non pregnant one!
Alfie starts school next year, it dawned on me today after chatting with his mum Claire.
He is so very cute, can't wait to see him in a little school uniform!!
I'm gonna make plans to steal him from his mum and dad or granma and grandad and have adventures with him! Think MEMO will certainly be expecting a visit.. or two! Then i hope to pick him up from school some days and have him round for tea in (hopefully) our new house.

I'd love to have a few holidays in the future!
My number one place to visit, no matter what, is Iceland. I HAVE to see the Northern Lights. I think i have said it in a previous blog at some point that although there is a scientific reason for the Northern Lights, i just see it as magic. Real life magic. They have glass igloo's that you can stay in and get a real good view of the Aurora Borealis! Imagine how amazing that would be. I'm not one for bucket lists or anything but this has got to be one thing i have to go and see before i pop my clogs.
Anyone who knows me will tell you i am certainly NOT a sun goddess. I get prickly heat everywhere and it used to affect my breathing pretty badly. Nana Flo used to say i was an English Rose, i thought this was a lovely way to say i am sickly pale! haha. Anyway although i don't like the sun and being too hot, i  would however like to go to a Greek Islands such as Zante, as they just look so lovely and old worldy! My cousin Samantha told me she saw so many turtles whilst on holiday in Zante and i LOVE turtles so i have to go and see them! I'm sure it would be perfect as a nice chilled week away.
Salou was always a good old family destination when i was growing up, so would like to head back there with the family.
Florida is quite possibly my favourite place on earth. It's just a different world over there. Disney is magical no matter what age you are, the villa's make you feel like a millionaire and the rides and attractions at Universal Studios are out of this world. I'm a ride fanatic, i love them all!!

So these are my future plans hopefully to be achieved over the next few years, I'm looking forward to documenting each one of them on my blog as a little jigsaw of memories.
Save. Save. Save!!

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