Saturday, 17 September 2016
So I had my bronch last week and the result came back with Acute Rejection, this was the Clouding on my CT, also known as shattered glass affect a term I feel describes the feeling on my whole body currently so it has become the title for this blog.
I have to say this hit me fairly hard. My lung function was its lowest since receiving my second transplant at 40% the inflammation processes in my lungs made everything feel pretty tough. I was still recieving treatment for my organised pneumonia which is also a inflammation immune response in the lungs so it felt pretty frustrating that I then had actue rejection on top of that and my chronic rejection.
I recieved 3 days methyl pred, it didn't quite have the enitial impact I was hoping for but the idea is that acute rejection is treatable and reversible. Hopefully in the coming weeks things will improve.
So I decided while in Harefield I would take part in the Harefield 5k fun run. I say run because that's the title but in no way did I run. I walked and I struggled but I'm so proud to say I completed it. I think anything worth doing is going to be hard.
My little team, my niece and husband who walked it with me.
If you fancy sponsoring me for my efforts please pop over to www.virginmoneygiving.com/Kirstietancock1
Since I came home things haven't been great in all honest. My lung functions up and down but still pretty rubbish overall and I have had a few new medications added in to try to prevent these inflamation processes in my lungs. The side affects have been rough and I'm just hoping my body will start to adjust.
I feel like I'm not in my body any more, the muscle waste is very apparent in my legs, I feel thin and very withdrawn. I know I'm losing more weight with the high doses of prednisalone despite eating a fair good diet. My stomach is very bloated and uncomfortable. The exhaustion is relentless, mentally and physically. On top of this Stuart has had the week off and he ended up having a operation on Thursday night due to appendicitis. Stuart is never Ill and I hated seeing him in pain. No matter how minor we hate to see those we love struggle. He constantly told me to go home and leave him there as I was clearly struggling with my energy and breathing but I wanted to be there with him like he is for me. I did as much as I can. Today we're both resting, were a right pair! He's in pain and Iv had episodes of vomiting from my new meds along with severe shakes. Still were here together and that's what matters.
Along with this I had the extremely sad news that my friend Kate Hennessy passed yesterday. I haven't said anything about this as I currently can't find the words. I hope those who know her know its out of sadness that I can't seem to express this and I want my words to do her justice.
I know this is probably not the radiating positive blog people hope for, sometimes though all there is, is the truth. Things suck alot right now. I'm ok with everything in my mind and know I just need to conserve right now, in the hope for better days very soon.
Thursday, 8 September 2016
Updates haven't been coming in thick and fast because once I write one ready to upload I leave it a few days and everything changes again.
One minute things seem incredibly bleak and rubbish, the next things seem to going in the right direction and we're all celebrating but then we're back to things being all a little crap.
After my IV antibiotics and radiation therapy my lung function plummeted. If your on Facebook you'll know that things seemed really worrying my DRs were concerned I was nose diving in a similar pattern to my rejection before and that there weren't really any treatment options for my chronic rejection.
I had yet again another bronch and luckily they found something else slightly more treatable called organised pneumonia. This is a inflamitory response, a immune response to a previous infection or sign of something else going on. I was treated with high dose methyl pred which made me feel pretty awful. I put on 8kg of fluid in 3 days stopped peeing, my CF bowels shut down and I felt pretty rubbish for sometime. After 3 doses of methyl pred I went home on a higher dose of prednisalone in the hope that it would make my breathing easier and ease the inflammation caused my this organised pneumonia.
And it did! Slowly things improved a little and to be honest that was great because I was really struggling. I felt like my lung function was a lot lower than it was. In fact I was starting to get really scared by all the symptoms. I came back up to clinic last week to find out if I would be allowed on holiday on the 10th of September to Florida where we had been planning to go for a year and I had saved up all the money myself for me and Stuart to go from what I would say was a very successful year of business for me and a heck of a lot of hard work. My lung function was up to 60% I felt great and so happy to see the rise in the numbers and also being able to feel the benefits in my cardio at the gym. I had gone from 10minutes of level 1 feeling like I couldn't breathe at all to level 1-7 for 20 minutes. Obviously not my greatest but a huge benifit.
As I returned from clinic I started to really suffer with fatigue, I finished one of my lessons and sat in the car for over 30 minutes unable to move, eventually I drove to my mums where my step dad carried me out of the car, my breathing felt awful and I was purely exhausted. It came from no where. (no I haven't over done it that's not how this works)
There were several more occasions like this through the week and I knew something wasn't right. My lung function dropped on my spiro and I rang Harefield. I was already due to come up for a impedance study (a further test for reflux) they told me to stick to my plan and come to clinic. Wednesday I felt dire, I didn't even put make up on. That's really saying something for me, I love to cover my illness with a good foundation, eyeshadow and mascara but the energy to do that felt to much. To be honest just sitting in clinic felt to much.
I had all my tests done Wednesday including a CT and slept in the hospital accommodation overnight. I slept like a baby and I really needed that rest. Waking up feeling a little better I made my way to clinic.
My DR told me that actually there were a lot of changes on my CT, I'm not very good when it comes to X-rays and CTs I can't usually tell the difference in all honesty. This though was clear, it was like someone had stuck a cloudy day over my lungs. Huge white patches covering large areas.
We talked about every option I had, my holiday only looming this Saturday 2 days away. She asked me to go away and speak to my husband who was at work, my mum was with me. It was clear that if I am to think about surviving long term then I couldn't go. These patches currently seem reversible by what they can tell, if untreated or only partially treated could scar my lungs even more and make my chronic rejection much worse.
I went back in and said ok let's treats this. I'm going down for a bronchocopy tommorrow and having biopsies, this alone rules out flying on Saturday. Then they will decide on treatment from there. They are confident theses cloudy changes are viral and that treating them with more gross methyl pred and immuno globulins should be affective. Although they won't know 100% until they have done the bronch.
I feel gutted to say the least. I worked so hard for this holiday and with the last 6 months it's much needed. However I know now is not the time. I have fully comprehensive insurance but there seems to be some issues with my mum and step dad claiming there money back as they technically can still go and so could Stuart. It looks like we may only get the money back for myself as they have all said they couldn't go without me. That wasn't the idea. I really hope that when they have a bit more time to talk to insurance companies we can sort it all out. To be honest I'm not really in the mood to be messed around so if the insurance companies want to play assholes they picked the wrong girl to mess with.
My impedance test also came back positive so the DRs are going to talk to professor Hannah who did my fundo in 2013 and see if there's something else we can do. It seems there's a lot of confusion over my osophagus and fundoplication and I think that can come from being 2 very separate hospitals. I hope they can finally reach a conclusion that will make sure my lungs are 100% safe from reflux.
A lot of people have said 2016 hasn't been a good year for me, that I can't seem to catch a break. I can see where that's coming from but I also hate to tar a whole year as a bad one. Every year is so precious with out my donors none of them would have Been possible, so although this year has been a little rough Im still determined to think of all the good points along the way and there have been some really good points. Pole theatre, holiday with my husband, passing my aerial silks course, growing my business and really fully enjoying it, starting to teach aerial hoop, feeling successful and proud of myself. Just a few of the things 2016 have bought and the year is not over yet, I still plan to make the positives over ride the negatives and have some amazing pole workshops, privates with amazing pole instructors that Iv booked, a little weekend get away with Stuart's side of the family, beauty unseen, raising lots of money for this amazing hospital and a trip up to Scotland at Christmas to see one of my besties (who came down to see me last week).
So for now this is my update. Fingers crossed that whatever's going on is sorted and my Chronic rejection is stable.
Thursday, 28 July 2016
Having this chronic rejection diagnosis was a real kicker. Despite all the positivity there are moments during my treatment when I honestly sat and thought this isn't going to work. This is it. I'm only human right? There are always moments of doubt, these moments are well justified. How can I have faith in something that didn't work for me before?
Radiation described to me the first time as a hammer to crack a egg. Well I was left truly scrambled! The side affects were awful and I was left feeling very ill indeed. Just over a week ago I was having crappy temperatures, full of flem, very breathless and generally feeling weak and tired. I had come home from Harefield after finishing radiation, thinking I could just jump back to life where I left off and that wasn't the case. A couple days later I went into Exeter hospital and start Iv antibiotics. They worked extremely quickly in making me feel much better!
I'm now back home and finishing of Iv antibiotics. Iv taught a few lessons but there is much rest inbetween as the radiation side affects still linger. Iv had over a month of doing little to nothing. During the couple of weeks of radiation I spent with my head in a sick bowl or asleep. I lost nearly a stone of muscle and my legs to me looked thin and weak. My legs are always one of my body hang ups, when my body's working hard it eats my leg and ass muscle first and I end up with pancake butt. This reminds me of when I had painfully thin legs and I had to learn to walk.
So the next few months for me are all about wellbeing. Mental and physical. Rest + exercise + good nutrition + work + hubby time = a well balanced happy Kirstie.
I still don't know if radiation has worked to hault the chronic rejection. My lung function is still going down but it takes some time to plateau. I'm told it won't go up but just stabilise if it's worked but Iv also heard some people did get some lung function back.
Now I'm back home in feeling much more like me, happy, hopeful and looking forward to a holiday in Florida in September which my DR gave me the all clear to still go ahead with.
Thursday, 23 June 2016
Now the glitter has settle, the costume has been placed neatly away until next time, the shimmers and sparkles are back in there box, the fake tan, well that's staying put for the summer but my mind has come back down from cloud 9 I'm ready to write about Pole Theatre.
On the 21st of May my heart raced constantly, my mind whirled, my stomach was doing flips as I was ready to get on stage. In my costume made especially for me sparkling a pair of lungs by Fi Bourke I was there to tell my story, a story you all know well and I have told in many ways before, through word, through documentary, through writing but this time it was a way in which I felt like I was ment to do. I would twist and turn my body around the pole while one republic I lived played. I was there to act, to dance, to feel my story, to lay it bare for everyone to watch while I felt most at home but almost stripped back to my bare sole for everyone to look inside to see, to feel my emotions.
As I stood there at the edge of the stage trying to compose myself, to catch my breath as the nerves had simply knocked it from me and then Michelle shimmy starts to speak, the toned, tanned, Australia pole goddess was talking to me. I don't know what it is about the Australian pole ladies but they are something simply to be in awe of, I had a similar experience when I met my idiol felix not just any Australian goddess she is the goddess of goddesses.
Michelle was getting ready to introduce me on stage and she read my bio, it was short and sweet explaining my story, my life with cystic fibrosis and receiving a double lung transplant and chronic rejection I didn't include my second transplant in the bio, my performance would tell that. She exclaimed 'you've had a double lung transplant' I replied with ' 'yes 2 actually' gobsmacked she asked how I was, ah here's the thing, I'm wasn't actually doing so well, a whole month and my lung function has been going down a fair way, I have been up and down to Harefield for tests and medication but there is still no exact diagnosis at the time. Now we all know I'm in Chronic rejection.
How do you explain that to Michelle shimmy, well I don't really know what I said, I think I mumbled and bumbled until my husband and coach Amy told me I was starting to get my self panicked and I needed to calm down.
Yep I was about to step on stage with my precious lungs that were struggling and ask them to help me fly. I knew the possibilities were stacked against me, I knew that I might step on that stage and have to stop because I couldn't catch my breath, that I would then have to stumble off in complete embarrassment and horror because this stage was for semi pro, lots of people had entered, lots of people hadn't got through. Only 6 were in my category, there were international competitors to. This was big, but if I didn't go out, if I didn't try, this opportunity might never come again and then I would kick myself.
It was time. I stepped up checked the poles and got to my start position on the floor. My music felt so quiet, I know It was loud but my ears had that bubble feeling, I just couldn't hear it.
My first combo Felt great, I Beamed in my first splits trick and looked into my audience capturing the judges eyes.
I removed my hospital gown bejewelled with black lungs and showed my glistening costume under neath.
Suddenly I felt like all the air in the room was gone, I climbed for the second combo and failed on the invert, my muscle had run out of oxygen and failed. I styled it out and picked up what I could. I took precious moments to gain some oxygen back, to breathe. Had I been to fast and used it all up or were my lungs just not up for it this day. I carried on determined that I must get through. I had to do it. It came to my last combo, I climbed the pole held for my bendy elbow hold and made my way to eagle.
Sliding down the Pole I made my last connection point with the audience and Stuart scooped me into his arms. We walked to the back of the stage, he asked me if I was ready to take my bow.
See we choreographed that scoop for one reason because I know I wouldn't be able to stand any longer. I whispered no I'm not ready, as I clung trying to breathe, he said I had to be put down now. We turned and made our bow. I walked off and made my way to the floor where Sam my friend and fellow perform placed my head on something softer, Stuart hoovered and Amy held my hand. Stuart undid my costume as it was now to tight to breathe with my struggling lungs. I don't know how long I stayed on the floor, it felt like a long time.
At first I felt disappointed I wanted it to be perfect but then when I saw my video back suddenly I felt nothing but pride. It might not have been my best ever but god damn it I did it and If I could, I would do it again and again. I would choose to do it perfect but if not I would do this exact performance again and again.
Here's the link for you to all watch
Next thing I knew I was front page of the express and echo they had shared my video and over the 2 videos i accumulated 15k views.
So now I sit here reminiscing of my competition, I didn't win the competition but for me a personal victory took place, I did have another competition in a few weeks but my radiation has been bought forward and I start today. In my mind I wanted to believe that I could do the competition, but my lungs are very much up and down and all over the place. With the radiation starting today by the date of the comp I should be neutropenic which means no immune system and barrier nursed.
Part of me wanted to do this comp because I don't know if I'll ever be able to do one again. Radiation will hopefully stabilise me but I won't gain back what Iv lost because chronic rejection scars the lungs. It also causes air trapping which I'm really feeling. Im determined to stabilise then build strength in my lungs to hopefully enable me to do so. It won't be easy but nothing worth doing ever was. At the moment I'm keeping active as possible and teaching when I can. I have to keep using my lungs so that they don't decline in fitness Aswell as lung function. It's the only way I know how to do this.
Friday, 17 June 2016
So I promised more posts about training as a spoonie and I promise there will indeed be! In fact there is a mass of scribbles that currently need to be deciphered so you can all understand my jibber jabber. But I have a couple of personal blog to write...
One about my amazing experience at Pole theatre Uk and the other which I wanted to share with you all today.
For those of you who follow me on social media sites you will already know. Here it is for those who don't along with some more thoughts and feelings.
See my lung function has been dropping over the last 2 months, it is down by more then a litre. Sounds a lot, that's because it is. Iv been back and forth to the hospital where I am currently. Iv had several bronchs and finally Wednesday came. Crunch day. I knew they had to tell me what was wrong then and there it was. I'm starting radiation therapy. I asked if there was diagnosis with this. O.B otherwise Chronic Rejection.
I held myself together and said ok, thinking of everything that had happened before but also calmly reminding myself that not all chronic is the same and that actually although I had had a large drop in lung function it was not as much or as quick. My lungs were at the best possible lung function they could be before this, so my lung function is still relatively high, that means we have one thing we didn't have before. Time.
I am strong mentally and physically and in a very pragmatic place. I'm looking at all the research, planning how to manage my business and finance. My biggest worry was telling everyone. Telling my husband, my nan, my sibling and friends. Mostly I felt sorry, sorry they would have to hear this scary news and face this battle again. I hate them being upset and it's what hurt the most. I tried to tell them in the least injuring way possible, reminding them that this is a different situation and that I'm going to beat this but I knew once the words chronic rejection their brains would go fuzzy and anything else I said would be like a distant echo.
So I'm to start radiation therapy as soon as possible, today I go home while I wait for my appointments. For me obviously I'd rather start immediately but that's not possible so I'm going to use this time at home to get organised for when I come back up. Try to see all my friends who are now fearful that they might not see me again and remind them they aren't getting rid of me that easily!!!
So Iv always wanted to raise more money for Harefiekd hospital with all they've done for me and I decided that I might Aswell crack on with this so I created a virgin money giving site. This is for all my friends family who wish to do fundraisers to put all the money in one place and for those who have asked if they can donate money to show support can now do so. I appreciate everyone's ongoing support, if anyone would like to raise money for Harefield then please feel free to email me email@example.com
Here's some pictures from my stay, trips out with friends and time with my hubby as we celebrated 5years of marriage yesterday.
Monday, 21 March 2016
Training when you're a Spoonie
What is a Spoonie? Well here's a little definition from the urban dictionary which sort of explains it, in a short and sweet fashion.
"Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion... sometimes having an abundance, other times coming up short."
So I have lived with Cystic Fibrosis all my life, in a way a curse but it makes me a pro at measuring my spoons and spreading them evenly to do all the things I want to do - I am a proud Spoonie! I will be blogging about this over the next few posts, writing all my thoughts in one chunk felt a little too full on!
I often get asked by others with medical conditions/chronic illness how I train and get better at pole with all my medical constraints - how do I spread my spoons? Some of these people are others who have Cystic Fibrosis like me and may or may not be post-transplant, others are from the pole community who have other illnesses such as Fibromyalgia and other nasty spoon juggling conditions. Now, I'm not saying I know everything about training with a chronic condition, I certainly don't and a lot of it is trial and error. What I do know is that I have great respect for those of you who are training with a chronic illness - I am constantly learning from you all.
Cystic Fibrosis is a disease that affects the lungs which is why I've had 2 double lung transplants, you probably already know that if you're reading this, but what you might not know is it actually effects a lot of my other main organs causing dysfunction in some and failure in others. My digestive system doesn't work like it should and I suffer a lot of pain on a weekly basis through blockages; my pancreas is practically non-functional, meaning I don't send out enzymes for breaking down fat from food or absorbing vital calories for energy; I also don't deliver insulin to absorb, store and utilise the energy from sugar making me a Type 1 Diabetic and thus dependant on insulin injections, my liver is also effected. Aside from the direct implications of the Cystic Fibrosis, I also have post-transplant related complications - in order to make sure that my body does not reject my transplanted lungs, I am immune-suppressed which means, unfortunately, I catch everything and this makes me poorly regularly; I'm post menopause from radiation therapy and so have regular hormone problems which lead to fatigue and last but certainly not least, I suffer with juvenile chronic arthritis which although is not as bad as it has been previously, does cause pain regularly.
So, these are the things that make me a Spoonie, how I manage this - well that's the hard one! Notably, my training really varies week-to-week, depending on how much I teach, how well I feel and how much time I have. Whilst I aim to train 3 times a week, every week, it would not be truthful or realistic for me to advertise that. Some weeks I'm lucky to even survive all the lessons I teach, let alone my personal training. But I've listed below, some of techniques I use to aid in my training.
1.) I have a coach, I know I'm an instructor and can, theoretically, train myself but when you have little energy having someone there to support and guide you is an incredible tool. Amy Williams is my coach, I think it's really important to pick the right person. She is there to break down the new moves for me so I do not have to spend time figuring them out (time which I always have to utilise as effectively as possible). She also motivates me in a positive way and keeps me in check when I'm feeling low. Basically, Amy stops me spiralling into self-pity, something that inevitably just tires me more. I picked her firstly, because I liked her style of performance but in all honesty I lucked out, she has a wealth of knowledge which I feed from and most importantly the right attitude to help me in the ways I need with her caring, understanding yet no bullshit attitude - I don't have time for bullshit in my life. Don't be afraid to change coaches/instructors if it's not the right fit!
2.) I warm up for a long time, some days I may spend 1-2 hours gently warming the body. This ensures that I reserve energy for the actual task but also gets me moving and ready for it at the same time.
3.) Don't overdo it. Sometimes, I may only train for 30 minutes - I really listen to my body and if it's not feeling it I know I'm only going to suffer and not achieve a lot. And often 30 mins, with a clear goal, is enough to pack a punch.
4.) I'm constantly making new goals - researching what I want to train, this way I know that the time I spend actually training won't be wasted on figuring out what I want to achieve. I have a list of moves and some are for intense training days and others are for no energy days when I know I need to get it done and rest.
5.) I watch and watch and watch videos. I know that I'm a visual learner and most of the time I can learn something just by watching it and emulating it at a later date. I don't think you can ever get to much inspiration. So just sit down and watch when you're not feeing up to it yourself, sometimes I find that this then gives me the mental energy to train because mental energy is just as important as physical energy. I always save the links to things (NB. on Facebook you can save the link to a video in the top right corner where the little down arrow is. On Instagram you can copy and paste links which you can then save somewhere for later reference - I save mine in the notes app on my phone.)
6.) I vary my training - just because I'm training for pole doesn't always mean I train pole. Some days I know my lungs aren't up to dancing around, so I stretch and work my flexibility and contortion instead. Days when my tummy feels rubbish and sore I might go to the gym and train biceps and triceps in a way that doesn't involve to much core activation, as I know my core just isn't up for it. When my joints hurt it’s mostly floor work with little to no flexibility.
Sometimes, you need to recognise that you aren't up for training at all. This is a tough one to call, but maybe the most important part of this blog. You may feel as though making the decision not to train is admitting defeat, but in actual fact it's just recognising that this is another part of your training. I call this the “TLC” part - where you reset and prepare for the next physical part. Signs and symptoms that you need to rest are: A.) Complete Body Ache, if your body is starting to ache all over it may be sending out warning signs that it has had enough. When your body becomes stressed it releases hormones such as Cortisol, which can lead to lower immunity, bone density, increased weight gain, blood pressure, cholesterol and heart disease to name a few. These will greatly impact your future ability to train. B.)Temperatures are a no no! If you’re starting to burn up, stay at home! C.) Pain From Your Condition, I'm all up for pushing the barriers of pain but there are some pains we have to admit is too much and acknowledge that you will do yourself harm should you try to train like through it. This really is a judgement call. (NB. I will be going more in depth into pain management in another blog, looking at how to train with it and when not to.)
7.) Now we've established that rest is part of training, the questions becomes ‘what shall we do in that rest time that can benefit us?’ The answer, TLC. I look at biomechanics and work with that: body parts that might be sore - roll them out to release muscles, use trigger point therapy and just think about maintenance for the body. A massage from my sports masseur, Heather, is always a great way to help ease those muscles (she’s a genius!). Often, something as simple as a hot bath, or a splash around in a pool is just the ticket. Alternatively, try going for a little walk to clear your mind – effectively, we are looking at things that are good for both the body and the soul. Sometimes training whilst being a Spoonie means being a problem solver - if this body part isn't functioning today, what can I do with the rest of me that is? Remember to love yourself and the body you work hard and that works hard for you, you may feel rather angry at it sometimes because it doesn't function normally, but it also does amazing things for you every day. How can you expect it to carry on performing if you don't take the time to reward, nourish and love it?
8.) Finally, fuel your body properly. Too often people focus more on weight loss than on health. Weight loss can, of course, be part of making a healthier you, but it should not be the main goal. I will be posting another blog, later, explaining what and how to nourish your body with the right foods.
I hope that the first instalment of this series of blogs has given you some food for thought. I should just like to end on one last message: just because you have physical limits doesn't mean you can't push past them and achieve even your greatest dreams. You got this far, why can't you go further
Monday, 14 December 2015
As I mentioned I'm currently training my video entry for pole theatre, tomorrow I record it and send it off all before 12 midday.
The video entry is judged and then it is decided if I get to compete at semi pro umoung 5 others in drama category.
This week I have not been 100% I have had temperatures and tiredness,nothing all that serious but it has left me feeling weak and a little disheartened. Although my lung function is great and I can do a lot, the one thing I really struggle with is doing a whole routine gracefully, maintaining strength through out while the whole time I am heaving for breath. I'm not saying I struggle with breathlessness because on the whole I don't, I can put most people to the test but I cannot seem to deal with this breathless feeling during routines. I guess I have to consider if all I have been through I really can do what I want? Am I just dreaming the unimaginable, reaching to far? Bound to fail all because I dreamed a little to much.
That feeling of dizziness, while your heart is pounding in your chest, while your lungs feel empty, its scary. I know why sometimes people post transplant don't want to exercise, because why would you want to feel that feeling you felt so close to death even if it is not a touch on what it was before and not the same thing, feeling remotely like that your body panics.
I wonder if after everything my body is capable of what I want to do? I really want to thing so, but after running the routine thought for the 5 th time, the lifts look weak and heavey if you make them and sometimes you just can't. The feelings of failure can become a little to daunting.
I don't want to run and hid from this, I don't want to turn my back on this dream, any thing worth having was never easy, right? Well this is definatly not easy, so it must be really worth it.