Thunder & I
I was really nervous the following day how I would cope at home with Stefan at work and on my new regime. Lung transplant after all is not a cure, I still have cystic fibrosis, it still remains in my other organs and my nose and throat (airways) and I have to continue to take all my CF related medications as before plus my new medications to help my new lungs stay as well as possible. I start the day off by taking all my morning medications and nebuliser, and then taking my temperature and weighing myself. At ten in the morning I take my immunosuppressant’s and then carry out 3 lung function tests, I record this all in my blue book (that your hospital will give you post tx). I have to lookout for factors that could show a sign of infection or rejection in my new lungs. These are a temperature above 37C, a weight gain of 4lbs or just under 2kg’s in 48 hours, a 10% drop in my lung function from the reading the previous day, and any signs of infection such as sore throat, cough, head cold & pain. I have to contact Harefield should any of these arise and follow their advice or be admitted depending on the seriousness of my situation.
During the day I keep eating and drinking little and often and carry out what exercise I can to get my lung function up and my muscles moving in my legs and arms etc. Great friends of ours, Darren and his dad Stephen surprised me with a exercise bike on my return home which was an absolute god send and I have been working hard on that daily between 15 - 45 minutes each time to help with my rehabilitation. In the evening it’s time for my usual medications and nebulisers again and then at ten in the evening I take my immunosuppressant’s. There are do’s and don’ts I also have to follow. For the first 3-6 months I have to stay away from crowded areas and keep off public transport because of risk of infection. It’s obviously common sense to keep well away from poorly people at all times no matter what stage I am post transplant as this would be no good for me whatsoever, I can also no longer be a sun worshipper due to the medications i am on making my skin super sensitive to sunlight!!
When it comes to food there are a few things I have to avoid as well. Some which I am not bothered about but others …. Rare meat! A nice pink steak is a no no! Cured meats, salami, Parma ham and such like, bugger! Unpasteurised foods, such as camembert, stilton and feta! Eggs, no runny yolk! Dam you Stefan for getting me to finally love poached and fried runny eggs on toast!! Pate, shellfish, mayo and grapefruit I don’t really give two tosses about but hey ho, my new lungs are here and I’ll be dammed if I do anything to risk them!! It’s a shame but I’m relieved I got as much ink as I did in the past, I did have plans to have a lot more. (pictures of my snake babies tattooed on myself) I still can mind you, but its again a huge risk to my new lungs and right now I certainly wouldn’t do anything to jeopardise that, I’ve also come to term’s that pregnancy is a definite no for me also. I won’t go into details about what my transplant consultant said a few week’s back as it may offend some people (although it was aimed at me entirely so the only person it should have offended was me, just so happens I like his straight talking, ‘to the point’ opinion) Pregnancy is a HUGE risk, and although in the past I would have given my right arm to be a mummy. Having been through what I have and come out the other side I am grateful to be here, breathing and I am grateful for all I have now. I wouldn’t risk it all for a moments madness, I’m sure there will be days I will be low and think things differently but I know that this is what’s meant to be and I am truly thankful.
The immunosuppressant’s are a nastiness all of their own. They play a vital role in my new life for my new puffers yet cause so much problems else where! I am on tacrolimus and mycophenolate (Tacro & MMF)
These medicines help to stop my body from rejecting my new lungs but also increase the risk of infections and cause other side affects.
They have dulled my taste buds completely and many foods, especially savoury, don’t taste like anything to me, a real pain in the ass when your trying to eat as much as you can to put on all the weight you have lost! It also causes me to shake, sometimes you can barely notice it, other times I look like I’m about to have a hypo from my blood sugars, I will have this for life but it should become less obvious overtime, so if you see me and are concerned about my unsteadiness please don’t worry, its completley normal! Tacro has also caused hair loss, it’s actually seemed to stop growing so much on my body (arms and such like) but I am losing a lot from my head, it comes out in massive clumps, some days are better than others but its very embarrassing at times and I do feel incredibly self conscious.
Now finally I don’t know whether this is due to a combination of the medications or whether its just about me being on this journey and things have ‘clicked’ in my head… I used to be incredibly sensitive and would cry at many things, now however I pretty much cry everyday, and it can be anything. I could be happy and cry, just because I am so overwhelmed at being here, or I could hit rock bottom and feel so low I just have to let it all out to feel relief again. I still haven’t had much time to think about what’s happened, to reflect on the last two months and I haven’t spoken to anyone professional about my feelings, this is a route a feel I need to go down especially when it comes to my donor. I have also lost all tolerance of people. I used to be able to walk on eggs shells, not like to fall out with anyone or hurt peoples feelings, not saying I would intentionally do that now but for some reason, if someone upsets me now I get angry and I just cannot be bothered to keep trying with them. Life is far too short to waste on people that cannot be bothered with you. Beforehand, I would apologise even if I wasn’t in the wrong, I couldn’t bare confrontation with people, today I’m more than likely just tell you to do one if you‘ve fucked me over. I feel like I feel things 100% more these days, if I get hurt, I really feel hurt and let down, if I get angry, I’m vexed to the max and can’t calm down for hours, and if I’m happy I can be stupidly ecstatic, it seems everything’s to the extreme and until I figure out what’s going on with me I guess I’ll just have to ride it out…
Back to being home and was I slowly started getting used to my daily routine and enjoying seeing my lung function improve by the day, I was barely sleeping and still very sore but it was all part and parcel of recovery. Stefan and I had made the most of a few hours out when he had finished work in the evenings when we could and it was fantastic - So we made a few plans to be able to enjoy the bank holiday weekend out and about and he had a week off work for shut down that we couldn’t wait for….
In Paignton enjoying a Slush Puppy
Bang, Saturday night, my poorly husband starting throwing up constantly and was in agony…. Our friend Darren took us to our local hospital the following day who sent us straight to Torbay A&E surgical team, with an suspected appendicitis. I couldn’t believe what was happening to us, only a matter of days of me being home from Harefield hospital, four weeks post transplant and I was back in another hospital with the role completely reversed and my husband was being operated on. He was extremely lucky, the appendix was about to burst and they removed it just in time on Bank Holiday Monday. It was one of the hardest weekend of my life, not only to go home on my own every night and leave him on the ward and try and cope with caring for myself only after a few weeks of major surgery, but to see my soul mate and best friend so poorly, and not be able to do anything to help. I never knew how much I took for granted how he must have hurt to see me suffer when I was in pain with all the tubes and unable to breathe. I will never forget it as long as I live, it was an extremely testing 4 days for us…. Thankfully after the operation, he was miles better and soon came home. He had the week off but was unable to drive (as am I still until I get the ok from my transplant team) and in a lot of pain, so we made the most of looking after each other, and walking around the town for exercise and fresh air like a pair of old biddies, everyone who bumped into us thought it was highly amusing!
Stef finally got behind the wheel just before Monday came back around and took us to Dawlish for a few hours, we walked along the riverside and had a snack in a café. It was great and I was so glad things were slowly back on the up…. We decided the following weekend after looking at the weather forecast we would plan a picnic on the Saturday and go to the moors for the day, lots of nice walks up a few hills and stuff myself with lots of nice goodies…. We really should learn never to plan anything Stef and I, it just never goes the way we intend it too.... That Friday evening I was throwing up constantly and in agony with stomach cramps, I threw up my immuneos, (not good!) and went to bed after notifying Harefield. All day Saturday I tried unblocking what I thought was a CF Stomach with Klean Prep and Movicol, I even had the district nurses out for suppositories but the pain was getting worse and everything that went in my mouth came up literally a few minutes later. I had hot and cold sweats and my temperature was rocketing…. I was then admitted to Culm ward at the RD&E on Sunday. Six days I went without food, I was pretty much stuck to the bed on 24 hour infusions of Tacro and fluids, my levels were so low and the MMF had caused my tummy to paralyze and stop working. My CF team were talking to Harefield everyday back and forth about my care and finally things started to improve and I was eventually allowed home on Thursday evening last week. My lung function has since dropped and Harefield weren’t too happy with me yesterday at clinic, but after 6 days of being quite poorly I’m quite surprised they would expect anything more?!
Me in Dawlish
Without all those oxygen tubes & wheelchair!
I am now working my little arse off everyday this week to get my lung function back up so Dr Reed doesn’t want me back to Harefield at the end of this week for a bronch… I know I’m still early stages, I mean I’m not even 8 week’s post just yet!! I know I am going to get little blips, I just can’t bare another hospital trip so soon. I just want a break, a few day’s and some normality with my husband…. It feels like too much to ask!!!
In my next blog I will write all about Harefield's clinic trips and the new friends I have made :) & include my new article that was printed in the local paper last week.... Thank you for reading. xxx
So pleased to read this recent update, you have amazing courage & I wish you all the very best in your recovery. Sorry about your husband being poorly, that's just rubbish. Lots of love Kay xxxx
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