I am very sorry for lack of updates. No excuses really, apart from a few blips. Now that my lungs are working, my bowels have decided to kick up a big fuss. Cystic Fibrosis effects not only the lungs, but the digestive system aswell. I have to take enzymes everytime I eat to help digest the food I eat.
Anyway, what happened was I went to clinic after being home a week and getting on with walking and my lung fucntion steadily improving I start to retain fluid again on my feet, but the doc was pleased with me and gave me some water tablets (frusamide) and went to walk out, and Ruth the nurse grabbed me and asked me what Martin had done with my immuno tablets and I replied nothing why and she replied back, oh well because they are low. Oh I said, okay, no worries, so how many tabs do I need to take to get them up, but she kept putting the answer off and said we need to talk to Martin first, and then he saw my new results and said "Sally you are giving me a head ache" I thought charming hehe, anyway, my levels should be in the range of 280-320, I was usually running at 300, anyway, my levels had plummited to 134. MEGA DANGEROUSLY LOW. So I said I have to come in don't I, and he sadly nodded. Damn I was doing so well. Neiter of us could think what had happened other than I had a peg in my tummy, which I was asked to take it out as I no longer needed it anymore, and what was happening when I drank Tea, Milk, or Orange Juice (mainly when I drank OJ) did what I drank come out of the hole that had been left by the peg. (A peg / gastrostommy) is a tube that sits outside my tummy and goes directly into my stomach which I have posted previously, which was to help me put weight on, and now I nolonger need it. But now is causing problems as is NOT HEALING :-(
So I had to go into hospital and go on a drip to stop my new organs being rejected. I felt tired and rough ever since saturday /sunday just not myself, and on the Friday did I start drinking Orange Juice and since then the acid in the juice had made the hole a whole lot bigger and more fluid was escaping, and we came to the conclsion that I was loosing the Ciclosporin (immuno's) through the hole, so it was decided between the doc and I that I was to be changed to Tacrilimous another drug to prevent rejection. This took a long time to get levels right and to this day 4 weeks on, they are only just settling down. When I was first changed, I lost my healthy appetite and I was a mood mare....... I was behaving like a 5 year old spoilt bratt and moaning at everyting. It was worse than PMT let me tell you. Finally I was allowed to go home again, at this point since being discharged after 7 weeks post transplant I had only been at home 6 days. I went home, on tac and was going to my local hospital for blood tests and was sending the samples back to harefield for them to be checked and this was a great routine. Then, this being tuesday, I went to POO and that was the last time for a very long time. By thursday evening I was in AGONY. But still I carrried on and ate my lovely steak fillet of Salmon, new potatoes and brocli to which I cannot stand the site or smell of now :-/ Friday morning at 4am I woke up as a cripple, I couldnt stand up straight and I was bent double in pain. I phoned harefield worried that I wouldnt be absorbing the immuno's and what to do. They said go to local hospital and get some gastrograffin from there. Gastrograffin is a brilliant laxative and makes you go really quickly, but stinks of anisead. But we went to A&E and they were great. They put me in a room and instantly reversed barrier nursed me and was fab. I was given pain relife (pethadine) no soon as the pain was gone, I was able to sit up and thats when the vomiting came. All the food I had eaten that was still in my tummy came up in chunks. (nice) hmmm...... Then I felt better and the pain had eased a little. I had both chest and tummy xray. I was moved to one of the natal wards (as only place with a side room for me) and the worst thing was, they wouldnt give me any pain relief IV, :-( I had to have it IM. (in the muscle) which didnt work as well, and then anti sickness I refused as I had been told that having that IM is totally painful. Then I was able to be moved to the surgical ward upstairs one or 2 days later, which meant more nurses to patients and I could have the care I needed. There was talks of surgery as my bowels were not moving and I was vomiting blood up by then, no green bile like I had in the past. In the past (last time 3 years ago) I had the same problem and I was bringing nie green grass coloured bile, but this time it was brown and like coffee grains. I had then bloods taken and they were sent by accident to the QE in Birmingham, NOT Harefield in London, so I had to wait another day to see what my levels were. The first time they were in theraputic range, then I had them done again and they had dropped, by now I was getting worried, as I still hadnt poo'ed and I was being sick all the time. Then it was decided that I was to be transfered to London. Which is where I wanted to in the first instant. I had Klean Prep, Gastrografin and suposatries and nothing, I asked for an enema but they were not keen to give me one of those this time, saying it was dangerous. So it had been arranged that I was to be moved to London and before I went to have a CT scan and a camera down to see what was going on, but these tests were not done and finally I went to London. I had some good pain relief and anti sickness which I had IM in the end as by now I had over 11 canulars in my arms, hands and now I had one in my FOOT. . . again (nice!) The anti sickness Cyclozine was tissuing each venflon I had, so I decided to have it IM, and you know what, it didnt hurt like I had expected it too, so I was happy and then I was having the pain relief via the canular in my hands/arms and foot along with fluids which I started to retain and blow up like a doll. I then couldnt breathe as it was collecting on the lugns again like it had done before when I needed 2 more drains, and I didnt want to have surgery there again.
Believe it or not, the ambulance who came to collect me to take me to London, was great, it had hardly any suspension and it must have kick started mu bowels in to working, as when I got to London which was almost week later from my first admission I was able to poo out the hard bits of rock, which was black and really smelly......
The next day I saw our doctor which was now thursday or friday I think, and he was slighly concerned to my levels being low and I was put on a drip again to make them better and was looking into more tests on my tummy, but as I had now finally been to the toilet he was relieved, but couldnt understand why the bleeding, but the sickness settled and after 6 bottles of gastrograffin I was going, it finally just just went in one end and came out the other the same way. I was neeeding lots of lactulose and movicol. As the pain came bad again ever time I eat and still does now, so if I take lactulose before I eat I dont get so much pain and if I have movicol before bed it comes out nice in the morning. My usual is twice a day and to not go for all that time, it was agonising. I dont moan about a little bit of pain,only when it gets that bad, I dont even take headache tablets for head ache only foot ache!! hehe - joke, but no, I suffer in silence, but I do show off about pain when its at a scale of 8-9. 10 being the worst. By 10days after I was first admitted I was almost ready to go home. My mum came down to stay with me, as I had become so weak from not being able to eat I couldnt do alot for myself again and this was frustrating. Was also good to have company too. I decided that I wanted to go shopping and have my hair cut, so me and mum went into Uxbridge. I bought some new clothes and sure enough had my hair cut. Wish i'd had it abit shorter now, but hey ho, could be worse. But you know, whilst I was shopping I felt rough as a dog. I couldnt walk, I felt so out of breath, and my heart felt like it was going 10 to the dozen, so I didnt really do alot, and never have I walked so slow. We went back to the hosptial and I checked my oxygen sats and they were fine at 97-98% however my heart was 120-125, slightly higher than it had been at 97bpm, and I was shaking like a leaf. The doctor came to see me later on that night and said Sally, please do not take any immuno's tonight or tomorrow morning, they are too high. I asked what they were and the range of tac should be between 5 and 10. Mine were in the 20's. I asked is this why I feel so shit, and his reply was probably yes. So basically I had to wait for it to wear out of my system. That night I was sick again, for the first time in about 5 days. It took me over a week to start eating again and then I was just having soup and abit of bread, hardly anything to keep a mouse alive, so this feeling was horrible. The next day I woke up early and felt good. I got dressed and just felt okay. Today is Tuesday now, and the docs came round in the morning and said i'd be in for a couple more days atleast. Then a few hours later the boss man came round and was shocked to see me and said why am I not home, I gave hi a brief update and he said, well you are pooing now, so if you'd like go and have bloods done at home and send them in. So I looked at my mum and then back at him and said great. I had a few tests done before hand and then I was aloowed to go home!!!! YAY!!!!! So Now post transplant I am now 10 weeks. 3 weeks after my original discharge date. I was excited to go home as My girls didnt know I was to come home and the friday following this Tuesday I had a show to go to in London "The Jersey Boys" Frankie Valli & The 4 Seasons. So great, me and mum were on our way home. Mum was actually going to come home this day anyway, so it was a good job she hadnt left before I saw Martin.
Coming home was brill. I went round the back and tapped on the Window where my mother inlaw was and Kelsey first looked up and saw me, shouted my name and then Megan too. They opened the door to which I recieved a huge heart warming hug by nearly knocking me over. I had by this point lost most of the fluid off my lungs and pretty much everywhere else too. My legs were like Sparrow legs, very thin.
So Finally Home, and this time, hopefully to stay, and am hoping that all the blips are a thing of the past.
Ill end here and finish off tomorrow or tuesday. I have some pictures to post, but need to sort them out. Bye for now x x
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Next Week, It Shall Be The Three Of Us, Kim, Lorraine & Me!
Then Paul came back to us with a pen and a piece of paper. He said that if I wrote my address on it, he would get the cast to sign it and he would get it sent to my home after. So mum said give him both programs and i said NO, just incase i can get them to sign it after the show outside. So we gave Paul one of our programs and we kept the other.
At the end of the show we left slowly and walked up the many stairs to get outside, now normally, i'd have struggled to walk up the stairs as there seemed to be about 30-50 of them. We go to the top where quite a few fans were there. And mum said she felt like a groupie! Some of the stars came out and the fans were calling them by their name (obviuosly) but mum said oh they know them and I said um, no I dont think they do, I think they are just crazed fans, LOL. Anyway, the first one to appear that I asked for photo and signiture was The Very Tall one,
who was their manager,and he was 6"4! He really had to bend down to pose for pic. Then the next one out was Stephan aka BOB, and he was really nice.
