I have a lot to blog about as I've been away for so long, for some reason I just didn't have it in me to blog, there was so much going on but everytime I sat down, mind full of ideas but staring at the empty page and nothing came out, it was a serious case of writers block - I knew what I wanted to say, I just couldn't get the words out! So I decided to take a bit of break, it's been well over a month since my last blog and I have a lot to update you all on, so prepare for a probably long-ish blog about my transplant assessment, whether I'm on the list or not, my birthday, 3rd lung collapse, Mum's 40th birthday weekend etc, I'm sorry if I bore you to death, but it's a biiiiiiig catch-up :)!
I had my wonderful party weekend for my 21st birthday.. I came out of hospital on the Friday (16th March) the night before my birthday, where I spent the evening round my cousins house with my Dad's family. We had a poker night, but also cake, champagne, presents, KFC and other goodies :) It was a great night and they'd put so much effort in I was really pleased as I thought it was just going to be a poker night, so I was really shocked and happy when all the surprises kept coming. It was a great night and I came 3rd in poker, I had got up that morning at 8am (woken by the nurses) then we travelled home from Papworth and I didn't have any sleep, I was in pain so I did struggle through the night and by midnight I was very tired and probably a bit grumpy lol but we all went home and I had a nice sleep :)
The bad thing was, I'd had an allergic reaction to something in the food I ate whilst in Papworth, I normally take antihistamine tablets with foods I'm unsure of, obviously at home I know what I'm eating and what I put into my food, but when I eat off the menu or food from the canteen, I can never be sure so I was having an IV form of antihistamine whilst in hospital, but what I didn't realise was they stopped it on the Wednesday for some reason it was crossed off, I then ate something with whatever it is I'm allergic to (I'm not 100% sure but I think it's a type of spice - coriander/cumin etc) and my lips swelled up like a fish, my entire mouth was sore, with painful spots and bumps inside my cheek and my lips, my tongue was swollen, tonsils and glands were up and I had no taste in my mouth - I also had thrush in my throat from the strong IV's I was on (so I now have to take Fluconazole when I have IV's to stop the thrush) so unfortunately I wasn't really able to eat or drink for a few days until it settled down, which meant no alcohol and also very little food at my party :(
So onto my party we go... I had a fantastic night, there were about 70 people there, it was at my Mum's house as I didn't have enough money to pay for a hall and my house is big, but not big enough to hold 70 people! We had music playing all night and the living room was the 'chatting' area, where people went to chill out on the sofa where it wasn't so loud, I did spend quite a lot of time in the living room because I was really ill so I had to stay sitting down most of the night :( but I had a great time still! I couldn't eat any of the lovely chilli Mum had made because of my mouth being so sore, it just burnt, also I had 1 shot of corky's and I almost cried in pain, so stuck to water and tea all night lol...! It was nice to be sober though because I could be a good host and see everyone enjoying themselves, which brought a smile to my face! :) I had bought 1 bottle of Sambuca, 2 bottles of corkys and 2 bottles of Apple sours so I went round with 'shot trays' it was great being the host, I was handing the shots out and I think everyone probably regretted having so many the next day haha!
I'd bought a lovely blue dress from Lipsy but before I went into hospital it was a bit loose so I was dreading trying it on for my party because I wanted to look nice and it just didn't, but I ate so much food in hospital (4 meals a day + lots of snacks) that by the time I came out I had gained about 4lbs, I put the dress on and it fit really well! No longer loose and baggy, but tight and pretty, I was so pleased and everyone said it looked nice so I was really happy with it in the end!
I got a lot of presents and money from everyone, I also got a lot of '21' things, mugs, bears, glasses, keyrings etc.
The worst bit about the night was I ended the night being very sick, I was the sober one being sick, all the drunk people weren't lol, oh the irony!! It was because I was coughing so much it made me very sick. So I went home, about 3am-ish, I was having pains and 'bubbling' in my lung around the area where my lung had collapsed previously, so I was really worried it had collapsed again.
I held on as long as I could, but in the end I called Papworth on the Thursday morning (the 22nd March) my clinic appointment was the Friday anyway, but I was telling them about the pains and that I was worried my lung had collapsed again, I was finding it very difficult to breathe, I couldn't take my oxygen off without practically gasping for air, the pains were so unbearable even my morphine (oramorph) wasn't touching the pain, so I'd decided to go into hospital on the Friday whether my lung was collapsed or not, I felt I needed a rest. Also my transplant assessment was on the 2nd & 3rd April so I wanted to be as well for that as possible, during my stay before they said I was borderline kidney failure because my body just decided to stop playing fair, so I was worried about being refused transplant if my kidneys were messed up, but thankfully after lots of tablets, fluid IV's and various other things, they returned to normal and were no longer an issue, but I wanted them to be closely monitored while I was in hospital because I didn't want anything ruining my chances of getting on the list.
I was in hospital for 12 days and Josh stayed with me the whole time, they got him a little bed and although it was horrible for him and me, we got through it. My lung had collapsed again but thankfully it wasn't bad enough to need a chest drain, although after the 12 days it was still collapsed, it hadn't got any worse but at the same time it hadn't got any better, but the plan was after I'd got back from Harefield on the Tuesday I was going to go home the next morning.
Monday the 2nd came and we were transported to Harefield hospital in London via an ambulance from Papworth, we left really early as I had to be there for 9am. When we arrived I was shown to my room which was nice and big, I had to do 24 hour urine collection but as I'd come from another hospital I had to be 'barriered' which basically meant I wasn't allowed to leave my room in case I had MRSA, so except for tests I was confined to my 4 walls, this meant I had to use a commode which was awful because I just find them so difficult to use! But I wee'd in a jug for 24 hours, which was an experience lol, until I'd finished the 24 hour collection then I could wee normally but still in the commode grrr lol!!
I had about 30 bottles of blood taken, my PICC line had decided it was the perfect time to stop bleeding, THANKS! So I had to have the blood taken from my veins, but thankfully I have one good vein which always works, if you hit it right, it bleeds and they got it in first time woop! I then had to have another blood test the following morning after fasting, I wasn't allowed to eat from midnight, also because I was having an ultrasound so I had to starve :(:(
I also had an ECG on the first day (heart tests) a chest x-ray and lots of chats with various people. The second day was a lot more busy, I had to have a CT Scan of my chest and they also did a DEXA scan, which is a scan of your bone density at the same time, I then had an ultrasound of my entire abdomen, liver, kidneys, spleen, womb, etc. Then I went back to my room and had food, yay! I was so hungry after not being able to eat all night, I decided to have a pot noodle then this lady came in and was talking for so long it went cold, but I was too hungry so I ate it, lol. They wanted to check my lung collapse hadn't got worse, I wasn't allowed to do lung function tests because the force of blowing out could cause a serious collapse as it was already half way there! But they decided I could still do the 6 minute walk test, which basically means you have to walk up and down a corridor for 6 minutes, walk as much as you can, but there are chairs if you need to sit down, I stopped quite a few times to cough and get my breath back but I tried to walk as much as I could, the idea is to say how breathless you are and how weak your muscles feel, because it's very important to keep strength in your muscles for post-transplant recovery, the weaker you are, the longer it takes to recover. I got to 9/10 on the breathless scale but only 3.5/10 for muscle weakness, I feel I haven't lost too much of my strength which is good, the physio gave me exercises to do at home, just simple reps lifting a can of coke or something 15-20 times once or twice a day, and a stretching exercise for my legs which works the muscles along the back of your leg and should keep them nice and strong without doing anything that would exhaust me or make me lose weight. I had my oxygen on during the whole test as I always need it on when exercising, my oxygen levels dropped quite low, down into the 70's towards the end of the test but thankfully when I stopped to get my breath back, they went back up again.
The worst test I had was easily the arterial blood gas, this is a blood test on the inside of your wrist, they have to find an artery and take blood from it, and unfortunately, arteries aren't on the surface so this means putting the needle in quite far then almost 'digging around' to find it, it hurt a lot I'm not going to lie, they had a go on my right wrist but he couldn't get any blood at all, so then he had another go on my left and did manage to get blood, then I didn't hear anything about it until one of the nurses told me that evening that unfortunately they didn't get enough blood so I had to have another go the next day :( but they were going to get an anesthetist to do it and he would use some local to hopefully numb the area. So I spent the entire second day absolutely dreading it, petrified about having it done again and the guy didn't come until about 2pm so I had ages to worry.. Thankfully the local worked and it was just slightly uncomfortable compared the it being extremely painful without the local, so it definitely helped and he knew exactly what he was doing, hit the artery straight away and got plenty of blood out, so that was all fine in the end!
Then I had to chat with the transplant co-ordinator and the pallaitive care team before I could go home. The co-ordinator, Brian, was lovely, I'd met him before anyway but he is very nice and puts you at ease, he had to go through this booklet with me which explains everything about transplant, the good and the bad, from now until the end - it talks about all the immuno-suppressants, what tablets you'll be on, what side-effects you'll get (most of them are not nice at all) the risks, rejection etc. He also explained all the statistics, survival rates etc. it wasn't fun to hear, but in the last 3 years they haven't had anyone die on the operating table which is my worst fear, so at least that was reassuring. They have to give you extreme worst case scenario but it wasn't nothing I didn't already know. The good thing is I have 0% antibodies, this means I can receive a transplant from all of the population (who are the right match for me, blood group O, my height etc) but if you have 50% antiobodies or something, this means 50% of the 'perfect matches' wouldn't actually be able to give you an organ as it would instantly reject, so having 0% is good, but it also means I could get a few more falses alarms, as when someone is called for transplant and they have say 30% antibodies, they call in a 'backup' in case their antibodies match, then I'd get the lungs, but if they are a perfect match for the other person and the antibodies aren't the same, they would get the lungs, so I'm absolutely thrilled to have 0% but at the same time, could get a few more false alarms, but in a way I don't mind having a false alarm, I'd quite like to go through it all and see exactly how it all goes, so the next time I'm ready, probably weird but there we go...
Anyway, I went home from Papworth on the Wednesday and I was going to be called by Harefield on the Thursday to say whether I was going to be put on the list or not.. The phone call came and they started by saying 'we want to offer you a place on the transplant list' so obviously I was super happy, but then they said 'but...' and my heart sank, basically between my first assessment in November and this one in April my average blood sugar had increased from 9% to 12% which is not good, I know it's my fault, I was so focussed on trying to gain weight, I forgot how important my insulin was with everything I ate, so I let it slip a bit, but anyway they want me to see their diabetic team in clinic to have a plan and also as my kidney function was a little low (as expected) they need to start me on a tablet to protect them, the appointment for this clinic is the 23rd May so just under a month. They will hopefully be putting me on the list after this, I hope. I'm not 100% sure, but I will find out when I go to the clinic.
That's about everything, my lung is still collapsed so I'm having to be careful what I do, I was in Papworth again from the 11th to the 18th, just for another rest and more IV's, I'm now on 24 hour oxygen which is annoying but it does help with my breathing so as much as I hate it and feel I'm getting a lot worse, if it helps then I guess I have to put up with it.
We went away for my Mum's (early) 40th birthday this weekend, it was great fun, we went and stayed in a very posh mansion house, me and Josh, mum and stepdad, my nanny and grandad, auntie uncle, cousins, sister + her fiance etc. we played pool tournaments, quizzes, murder mystery, other games and just had a great time, we had KFC on the Friday, a BBQ on the Saturday, then chilli/curry with jacket potatoes on the Sunday, the house was huge so it was a struggle walking around and thankfully my oxygen tubing from my concentrator is very long so I was able to walk from the living room to the kitchen with it attached and my bedroom was right at the top of the stairs, so we just sent it straight up over the bannister and into my room. I was on IV's, so I still had to do them while there and I did struggle a lot with pain and breathlessness, but it's not everyday you get to do something like that so I made sure I made the absolute most of it and spending all that precious time with my family was amazing :)
I'll leave you with a photo of all of us doing the Murder Mystery at the weekend, I was supposed to be a 'sexy secretary' lol.
Thank you for reading, hopefully my next blog won't be so long as I will not leave it this time! I apologise for disappearing and also if I have bored you to death...