Thursday, 13 October 2016
Sunday last week, my friend Amy traveled up to see me all the way from Devon, we chatter for a bit but then I had a little doze as I usually do because my body is working so hard. Then I started to get fever I get several times a day, this was particularly hot one and I had a few members of the team in and out to check vitals, then blood gases several times and turn the 02 up. They asked me if I was tired or couldn't stay awake anymore and to be honest I just couldn't stay away. My breathing rate was really high and while this was efficient to keep my C02 just acceptable they said I probably needed to be down on Rowan ward HDU which didn't really suprise me. I think the shock came when they came back and said I was really high risk now and would actually be moved to itu. I expected to be more panicked but all I thought is well I won't have to worry about doing my medications when I'm to tired, someone else can take care of that for me for now.
My mum, Amy and my sister packed my stuff which mostly couldn't go with me. I had a settled night on ITU apart from one blip where I woke up in tears saying I couldn't breathe anymore and needed bipap luckily the meds they gave me relaxed me and I managed the night off bipap.
I spent 2 nights in itu and to be honest somewhere that's been so scary for me before seemed to be a place of comfort. I was reasonably aware, some of the nurses knew me and all were extremely soft, compassionate and just what you need when your struggling. A lot of meds were regigged in itu, some to help fight my current pneumonia and others to help fight the symptoms so I can get things like eatting, Physio and rehabilitation done. All important things but when extreme sickness, vomiting, pain and lack of oxygen kick in all very impossible.
The phycologist came round to see me and I was very open to anything she could do to get me in the right place I needed to be. Which for me in my own words 'if my symptoms carry on like this I don't know how I will have the strength to fight much longer' and credit where credit is due I'm feeling so much stronger there were times when I just didn't know how to keep fighting. How do you carry on breathing when every breath feels like it's crushing you, panicking you, it's not enough but you can't get any more.
My fear when I die is it will be like that, I don't want to suffocate slowly I would much rather the pain be over very quickly.
Anyway I'm now on Rowan part of HDU. On humidified 02 as I have rotten sinusitus. My meds are getting on point and as my CRP has gone from 400 to 50 I haven't had any more temperatures, the symptom meds are all being finley tuned so that I can be as comfortable as I can and do my REHAB to start building some very weak muscle back and believe me I'm working so hard. The hard thing about this is when rehabing before my lungs got strong quickly as it was after my transplants these one well I don't know if they will actually get any better, the pneumonia might be treated but my lung function is not likely to get back to a point where I will ever be able to pole again. To be honest for me to get back to what I love I need a miricale and for someone who has received so many, I'm not sure I can ask for any more. For me my main goal is getting strength back as much as I can for what ever else comes my way and in the hope that I can make it home where I belong with my family.
I'm not ready to die yet that's one think that this pneumonia has affirmed to me. Even in moments of doubt I knew I could get through it if I had the right tools. Something Harefield have really come through with.
Wednesday, 5 October 2016
It often feels like the higher powers above are battling for my life, someone wants me here on Earth the other is saying it's time to go home.
I'm not on deaths door, that's not what this blog is saying, my health is more stable I haven't had any big drops in lung function, just the trickle of a percent or two, I'm still getting temperature and often feverish at night, my breathing is incredibly uncomfortable but still what ever part of my precious lungs are working are working well enough to keep my sats up. What this blog is saying is I feel like the last 6 month attack on my health feels somewhat deliberate. Every few years I'm battling for my right to life. Iv been so incredibly lucky to recieve both transplants and have a extremely good stint of health inbetween. Some people have not been that lucky at all and had complications from the start. But it still feels so incredibly unfair, I often hear people say why me and I have to remember . why not? What would make me so special to not have any health problems, it just doesn't work like that health and disease are not biased.
But still here I am feeling the uncertainty in my future. Wondering how much strength I have left in me? It makes sense that one person can only do so much, can only carry on fighting so long. What sort of life will this one be from now on if I do stabilise? I'm not saying I'm ready to give up, I'm really not, but I wonder if at some point my strength will waiver?
Right now it seems that maybe this isn't a infection after all, that all the changes on my CT, ground glass, consolidations, are actually another form of Chronic Rejection. A type called R.A.S I was always lead to believe that when I first had rejection in my first transplant it was B.O.S. Until recently when I signed the forms for my case to be discussed as part of a study, it turns out retrospectively they believe I had R.A.S or in fact maybe biopsies of the lungs showed it to be. I don't know if this means I have B.O.S and R.A.S or if Iv just had R.A.S all along. What I do know is R.A.S is more fatale and harder to treat.
So I sit here and I wait, I wait till they bronch me and tell me the results. Hopefully I do t have R.A.S and this really is just a tough infection. Mean while I carry on trying not to worry about my future but take one step at a time. Sometimes it's the only way to survive. Think about the seconds, minutes and hours but nothing more nothing further because I don't know what they bring and the fear of them can stop me enjoying the here and now.
Saturday, 1 October 2016
I write this blog from hospital. I have been in and out since my last blog. I celebrated my 27th birthday inbetween and reached my goal of 3k for Harefield hospital which I'm so grateful to everyone For helping me do so. My birthday was lovely despite being pretty ill. My husband organised a lovely meal with friends and family and I got to see my brother and friend Amy in the day along with doing a hour of shopping in a wheelchair from shop mobility.
With every birthday I cannot help think how lucky I am to still be here thanks to my donors. No matter how ill I am right now, without them there would not have been any more days, any more beautiful moments, all the things Iv achieved in these 5 amazing years! I'm so incredibly grateful for that.
Currently my lungs are really struggling. My lung function has been going down and today it was a mere 0.94 litres this is just 24% I have been treated for a possible infection due to some changes on my X-ray, as you may recall I had changes on my CT before now I have these shadowy changes on the X-ray to. I don't know if there the same thing. Iv had over a week of ivs now and things have just gone from bad to really bad. I have had temperature pretty constantly for 4-5 days although they seem to have come down with the help of IV paracetamol being given very regularly. The only problem is... My chest is completely clear so the idea of a infection just doesn't seem right. I have also developed a blood clot in my mid line.
This rate of decline has really scared me and I said to my CF consultant today as I'm currently in Exeter hospital, that I don't know where this is going but having lost another 11% of lung function over night although my sats are holding there own, if I lose another 11% over night I may wake up barely breathing and that scares me. If this is a acute fixable episode then I need to know that I'm in the right place with the right people who can get me through this. Exeter are the most amazing hospital ever but as they know they are a CF centre not a transplant hospital. I'm worried about the possibilities of ending up in ITU but at the same time I need to know that I have that option if it came to it. I don't really have many options left so if there are any that are available to me to get me through this I need to know I'm in the right place to use them. So tomorrow I am being transfered by ambulance to Harefield. I hope all the medications can start to work very soon and before this escalates anymore.
People will tell me to stay positive and I am, I'm positive in that I'm surround by the people I love who are ready to help me fight, if I get weak and tired they will help me stay strong. Remember just because I feel fear does not mean I am not brave, I still feel the fear and face it head on, just because I can see the negative doesn't mean I'm not positive, i still chose to see the positive when surrounded by all the negative. Some days though it's just a little harder to find that one tiny glimmer. But I will.
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.