To Do List (in my lifetime)

I hate the thought of a bucket list!

I just don't see why the thought of your death should give you the motivation to do something with your life. This is your life, you're alive so if you can.. go do it! You shouldn't have to be kicking a bucket before you decide to forget all inhibitions and go wild. Life the life you love!!! Just go for it!

To Do List:-

• Get a job

• Move out

• Go to Iceland & See Northern Lights

• Visit Galway (Ireland)

• Sight-See in Rome

• Get my own book published

• Write weekly blogs

• Scrapbook every year

• Do London Marathon

• Do Manchester 10K for pearce ward

• Take more pictures

• Keep an annual planner

• Try yoga

• Have godson & godmum sleepovers

• Plan wedding

• Get married

• Go on more walks

• Stay organised

• Broaden my food horizons and try more things!

• Keep bingo up

• Learn to ride a bike

• Always have nice nails

• Own nice bathroom

• Watch a gorgeous sunset 

• Go to a pub quiz & WIN

• Try every TGI cocktails except milkshake ones or minty ones!

• Learn sign language fluently

• Always buy Alfie & Freddie books

• Continue to see all future X-Men movies at the cinema

• Finish writing out nans diaries

Have you ever wrote your lifetime to do list out? 

I rather enjoy reading people's little bucket lists. It's interesting what people want to do or achieve in their life. 

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Bumpy Ride

You are told over and over again before transplant and after transplant that this isn't a cure. Ultimately, you're swapping one set of problems for another.
That's not to play down what an incredible, selfless and life changing/saving miracle that transplant is. I'm just saying, it's not the easy way out. It's hard, harder than you can imagine it will be. Once i found my voice after having the ventilator out post transplant, i remember saying,
"if things go wrong from here, that first breath i took on my own as soon as they pulled the tube out of my throat makes everything worth it."
Nearly 9 months on, sat here on my 3rd week of Intravenous Antibiotics out of a scheduled 6-7 weeks.. i stand by what i said.

Once I had got myself off transplant ICU and onto the normal transplant ward, i had everything running very smoothly. I was determined to get myself out of there and back home. Maybe it was because just 3 weeks prior to that day, I wasn't sure if I was ever going to be getting back home or maybe it was because it had been 3 months since I was last there. Either way, I was pushing myself with physio, I had revised my new treatment and medicines regime so I knew it almost off by heart and I was working on my erratic mood swings. Trying to wake up with a positive outlook for the day. 
One week on the transplant ward and our family was hit with tragic news, my beautiful, witty and strong willed nana had passed away. She was 82 with a wicked sense of humour and the biggest heart to love the biggest family she had brought into this world. It hit every single member hard, as you can imagine it would. She was the queen of our family!
Personally, I hadn't seen her since October 2014 due to being in hospital, I spoke to her on the phone through the hospital admission and due to recovering from transplant and still having chest drains in at the time, when she was taken ill in hospital and the family were told she wouldn't be coming home.. I wasn't allowed to see her, kiss her or give her my final goodbye before she left us.That was very hard for me to handle.More than her actually passing was.This made my mood spiral down and my anxiety creep up to an all time high.. my mood and anxiety were already out of sync due to the shock of going from near death, to full of life and all the crazy meds I was now on post transplant.It was a lot for my body to deal with but even more so for my head to.So first on this up and down rollercoaster post transplant blog is anxiety and mood.
I felt like nobody warns you about the effects it has on your mood and as I have mentioned on previous blogs. I found that extremely difficult to deal with.

A few days later, I had my first biopsy and was told that I had A2 rejection, something that is incredibly common in the first year of transplant. Your body is adjusting to having what is essentially a foreign body inside you. It's alien and not part of you so therefore, your body wants to investigate and attack, that's why you're on the anti-rejection tablets but of course that's all trial and error to get your levels balanced in your blood.
Next on this bumpy road blog, rejection.They're going into this blind for the first few months and so your first biopsy post transplant usually comes back with some form of rejection.

This is scored by the following:-
A0 = no rejection
A1 = minimal rejection
A2 = mild rejection
A3 = moderate rejection
A4 = severe rejection

So I had mild rejection and with this being a whole new world to me. I panicked. Regardless of everyone telling me not to as mild rejection is treatable.. I still cried about it!! haha.I think the word REJECTION is such an awful way to put it. It sounds, cold and final.The next day I was placed on a three day course of high dose intravenous steroids.The steroids gave me a boost in my mood, energy and appetite! Once the three days were up, I went home and when they repeated my biopsy a few week later.. It came back as A0! No rejection!!I've had a fair few bronchoscopies and lung biopsies since and all of them had come back as A0; until the one I had on Tuesday (29th September) it came back as A1, just minimal rejection.Due to it being A1, they aren't treating me with the IV steroids and instead, they've just increased my anti rejection medication for now. They seem confident this will clear it up and I will be having a repeat biopsy in a few week to find out.

What's next on this recovery rollercoaster? Tacrolimus Levels - poor absorption and side affects. I touched briefly on the last section that they struggle to get the balance right with your anti rejection medication at first.This usually settles after a few months or so and you get yourself a baseline.However, the consultants have found that people with Cystic Fibrosis struggle to absorb the meds and this can make it highly difficult to find that balance.My consultants have told me that I am one of three patients out of the 1000's they've ever treated that struggle severely with absorption. So much so, that I am the only patient in the Wythenshawe Transplant Unit that has their anti-rejection drug, tacrolimus three times a day and still have a baseline level between 4-6. The ideal is between 8-12 so I am on the lower side constantly.Last week I was on 2.0mg three times a day and my levels were 4.3!With my biopsy coming back as A1 they've increased my dose ever so slightly to 2.5mg three times a day. I am to have a repeat blood test next week to find out if my levels have gone up or not. Hopefully they will have.

Following on from my erratic tacrolimus levels, I am very sensitive to it. Which is very odd with me not absorbing it very well, but that's the way it is. So one I had left the hospital after my transplant, I was brought back in just two weeks after with being violently sick, bringing meds back up, unable to keep food or fluids down and dry heaving when there was nothing left to bring up. When I was on the ward, we found out why. My levels were high at 22 and this can be toxic which was causing a burning sensation in my hands and feet and also the cause of my sickness and vomiting.A week spent in hospital and we got the balance right again.There have been two more of these sickness and burning sensation episode since. With my levels sometimes being in the 'ideal' range of 8-12 but still causing the side effects to be too much. The doctors think my body is very sensitive to Tacrolimus and this isn't too rare.

Finally and the most lasting bump in the road was in May. Just 4 months after my transplant, I caught pneumonia and I deteriorated rapidly. Landing myself back in ICU on a C-Pap ventilator to help keep my airways open. My oxygen saturations dropped to 60-70 without oxygen and breathing was beyond difficult. It was an awful shock. I'd gone from experiencing life with the ability to breathe so easily to gasping and unable to get myself to the bathroom without feeling faint and unable to get my breath within a couple of days. It scared me, absolutely petrified me. The decline was faster than I would ever have anticipated and all I kept asking everyone was can this get better or have I ruined my chance by catching penumonia.Thankfully and luckily for me.. It did get better and after a week on ICU, I was back on the Transplabt ward for a week and then sent home on IV's. Unfortunately, that pneumonia didn't clear up as smoothly as we would have liked and my bottom left lobe is still consumed with thick sputum 5 months on. I have needed home IV's and bronchoscopies and Physio sessions at the hospital regularly since May. In fact, I have been on IV's more than I have been off them since catching pneumonia and I have weekly to two weekly clinic appointments so they can keep a closer eye on my progress. Progress which is very slow and very small but progress all the same!!



I haven't had the smoothest ride since transplant but nobody expects to! It's been a very bumpy road but one I am very lucky to get to travel on. I wanted to write this blog just to jot down some things that can occur after transplant. They are so small when you compare them to how i was before but it's not all plain sailing once you've had your transplant. 
There are still some hiccups, big and small! 
It can be scary too, you know you're on borrowed time but it's worth every second to have this new lease of life. 
I have spent more time than i thought i would in hospital post transplant but certainly on better terms! 
I am very, very lucky to be here writing this.. it could have gone a completely different way in the earlier days and even if it did.. 

"if things go wrong from here, that first breath i took on my own as soon as they pulled the tube out of my throat makes everything worth it."

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Writing a letter

After transplant, you are given the opportunity to write a letter to your donor's family. 

A chance to disclose your thoughts, your appreciation, your story, your hopes and dreams. Whatever feels natural to you at the time of sitting with pen and paper. 

I knew this would be something I would have to do and want to do before I had my transplant whilst I was still on the waiting list. There's a board on the wall in transplant clinic that has a few questions and answers about writing your letter to the donor family. 

I used to sit and read it every time in my wheelchair and oxygen or huge NIV whilst waiting to see one of the transplant consultants. I'd daydream about what I would write.. what it would feel like to have that opportunity to thank a complete stranger for giving you life. Someone who has no idea who you are either. 

I would sit and daydream and in all honesty I would underestimate how hard it would be when the time come.

Fast forward 2 years or so and that call came for me. I am a very, very lucky girl. When I went back to my first clinic post transplant, I sat in the reception waiting room and I read that same board with the same questions and answers. Suddenly it felt different, of course it would do. These questions where so much more real now. This time when I began to think what I would write to my donors family. I drew a blank and I started to panic. I felt utter dread about writing that letter. Just a deep anxiety.

That call was my last chance. I was so close to being on the verge of too poorly for transplant. It came in the nick of time for me but on the other hand for this family's loved one.. time had ran out. 

So what do you say to them? 

What do you say to a family who are grieving while you're learning to live a whole new life? 

I pushed it to the back of my mind. It wasn't the right time and they highly advise you refrain from writing your letter till you are at least 6 months post transplant. 

It allows you to recover, it allows you to settle in to this new life a little bit and it gives the family of your donor time to grieve for the one they've loved and lost. 

6 months flew by before I knew it and one day it just felt right so I sat with my pen and notepad and I wrote. I wrote whatever came to me and it just flowed. I didn't stop till I felt I had written what I wanted to put across and when I had finished, I had wrote 8 pages. That sounds ridiculously huge but it was a little notepad! When I had gone through and edited out little bits I felt didn't sound right and typed it up on the computer it was 3 and a half pages long. 

I worried it would be too much but I passionately wanted to get everything I had in my mind out. I didn't know them and I was under strict instruction to be very careful what I let them know about me due to confidentiality reasons. I was given free rain though really. It was very obvious things I had to stay away from, things like my full name, where in the UK I lived, my age and which hospital I received my transplant at. Other than that, I was told to write anything I wanted to. 

Given this information, I felt I wanted to let these people know more about the girl they had selflessly thought about saving at the worst time of their lives. 

So I started by introducing myself, as best as I could given the "rules" of confidentiality. I decided to start from the beginning and told them my story with little facts about me such as interests or achievements I had made along the way. Then I got down to the day that call came, I expressed exactly how my health was at the time, I told them the truth. I told them this was my last hope and I would not be here in July (when I wrote my letter) without them making that decision to say yes. 

I then wrote a message trying to tell them what that meant to me; if words can even begin to express it.. which they can't. 

To end my letter, I wrote a list. 

A list of things I intend to do with this life so they knew I wouldn't waste this opportunity and I would be eternally thankful to them and my donor. I told them I would live my life with all the highs and lows that were to come in honour of the person they had lost. 

I wouldn't let them down and I don't think I am so far still. 

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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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