Since seeing Dr Reed as written about in my last blog, I have been back to Harefield every fortnight on a Monday clinic, (again just this week) I worked hard with my exercise & saw my lung function improve slightly from the time before so Dr Carby was happy to let me home again with a 2 week break. I then went up again just this Monday & saw Simone the SHO. My X ray was excellent, showing signs that it was getting better each time with no marks of infection. My lung function was good, although I was rather disappointed myself, as all last week I worked hard with my walking & everyday my FEV1 & FVC increased bit by bit, so much so I was almost reaching the 2 litre marks! On Monday, I only managed to reach 1.70 - however, I was picked up at 5am & then sat on a journey to Harefield & got there at 10am, from then I walked into clinic sat down & waited & then had my lung function done pretty much straight away… When I’m at home, I at least do some kind of exercise first, then have a rest & then do my lung function so the results are always better. What do you expect when I’ve done sod all for the last six hours but sit on my ass on a long journey?! Hence why I was really pissed off, but Simone was happy as they were the same if not higher then my blows the time before…
My weight is still not very good at only 45kg, I can’t seem to put any on but I think this has a lot to do with the tummy trouble I am still getting since my admission almost six weeks ago. I was 51kg before my transplant and they really want me back at my original weight but until I get my stomach sorted I don’t think that will be achieved. I have to have a little operation on my scar as I have a part of the wire brace that has tired my breast bone / ribcage together since my transplant poking out of my skin, this is very uncomfortable, not nice to look at understandably and very painful as catches on pretty much everything, it will be under general anaesthetic but it’s a very simple procedure so nothing to worry about. Just means an admission to Harefield sometime soon which to be honest I am in no rush for!! I also had a bit of a cry as been finding things hard to cope with lately, what with a memorial of my dearest friend Kayleigh (who had CF & passed away at just the age of 17, 9 years ago) just been & gone & all the emotions you go through after such a life changing operation. Simone wanted me to see my Exeter CF Team regarding my tummy as she thought it was CF/ Creon Tablet related (the enzymes I take to digest my food) & I am due to go back again a week on Monday.
Clinic’s are mega long days, I am usually picked up between 5-6am, depending on traffic & who is also on the list to go up we are usually on the road for about 5 hours, I tend to get home between 8-9pm if not later….
Once we arrive we wait to have our bloods done, then weight, SATS & blood pressure. Next comes X-Ray & Lung function & providing you haven’t anymore specialist tests lined up you can then break for lunch & return to wait & see the consultant’s from 12.30pm onwards. You can usually ask Lindsay or whoever is at the desk at the time what time your appointment is to see your doctor & exactly who you are seeing so if you wanted to pop to the village or go for a walk you can do without missing your slot. Once you’ve seen your doctor, if you don’t have to go to pharmacy for your medications you can go, but then again this all depends on how many people are on your transport home and whether they have been seen or not. We managed to leave the hospital on Monday dead on 5pm, quite late but as usual really, the earliest I’ve ever left was 2.30pm and that was extremely lucky!!
The day is absolutely exhausting, it would be for any normal person let alone someone that’s had a double lung transplant and also as CF too…. I used to dread them, but to be honest, now I know the drivers, it’s a laugh, we always have a giggle, mainly at my expense, and even better if I’m lucky, I get to travel up with transplant friends I have met from my area (non CF suffers obviously) Steve from Plymouth & Dave from Exeter. They are fantastic blokes and really look after me when we get the chance to have a clinic together, so although it’s a tiring day, I do try and make the most out of good company, and at the end of the day if your feeling good, the outcome will be good and you get to go home again!!
Because Simone wanted me to see my CF team about my tummy I was up there yesterday for clinic. Basically, since my admission to the RD&E I have been getting the same tummy cramps like clockwork after I have eaten, and embarrassingly need to go to the toilet there and then. Like IBS it’ll just come on straight away and I have to go, soon as I’ve gone, I’m ok again, but this is happening every single day and a few hours after I’ve eaten. Its stopped me doing so much and I’m usually up from 5.30am in the morning with the horrendous pains. Dave (my tx friend from Exeter) came with me for company as I popped into see him & his wife Marie before my appointment time. I saw everyone, from physio to dietcian but the outcome wasn’t as great as I hoped, they moved around a few of my laxative medications and said they’d see me in a few weeks to see if it had helped… I’m on the highest creon dose I can take, I’m not stupid I know my body so know exactly how much to take with the fat content of my meal, and other than spacing it out more throughout eating they really don’t think it’s creon related. There is a medication I am taking however since my transplant which hasn’t been stopped and the side affects can be exactly what I am describing. So, I have decided to take matters into my own hands and take it at a different time of day to see if the pattern changes (my tummy is always worse in the morning as I take the tablet in the evening) so if this changes in the next few days I might find out the actual cause! If not, then it’ll be back to the drawing board but I really cannot put up with it much longer, it makes me scared to eat at times, its embarrassing, especially when there are times I am stuck in the car for up to six hours!! Not forgetting being nagged to death by both teams in Harefield & Exeter about my loss of weight & skeletor appearance! I am trying people!!
In between clinic’s as Stefan obviously works during the week (and has been doing overtime) the weekends are when we get to spend our quality time together. We have been out most weekends, even in the rain, travelling to different places for little walks so I can keep on top of my exercise & breathe that fresh cold air deep into my new precious lungs and chilling out in the evenings with our snake babies. I’ve loved every minute. It’s sods law that we have been invited to a few social events like friends birthdays etc that we have had to miss out but understandably it is still such a high risk for me in crowded areas (busy pubs, cinemas etc) / public transport & the longer I look after these new puffers the better I’ll be.
During the weekdays, I have been walking up and down the high street, for those who know Totnes town and where I live you know how steep the hill is!! If no one is able to meet me, then I tend to meet Stef from work on his lunch break at 1pm on the industrial estate and then walk back home then meet him again when he finishes, last week I think I walked up and down at least 3 times a day and was so proud of myself. Stefan even had me running errands for him the cheeky sod, but it felt so good being his wife that could help again rather than him having to wash and dress me because I was too poorly to do it myself. I’ve seen a few good friends, some I haven’t seen in sooo long and it was great to catch up and for them to see how well I am doing. I am yet to see some others but it’ll happen eventually I am sure of it. There’s only one place in Totnes I have been able to go for snacks and a drink as it’s spaced out and not as busy as other places so less risk of infection for me than the pubs and other cafes in town. Plus I can have a good walk there and back and love looking at the stuff for Halloween & Christmas! So if you see me tagged in China Blue it’s because that’s the only place I find I can go at the moment, unless its outside at the Seven Stars but with the weather recently it‘s not been too nice and you tend to get the smokers around you! I do tend to like peoples company more these days as I have the energy to get out now and my heads still extremely all over the place, fucked up if you like for a better phrase, if I find I’m on my own for too long, I tend to think, over think, and get upset…
I’ve even been driving my brum!! I haven’t driven in over a year and this feels fantastic!! I can’t park yet, unfortunately the moment my arms start to cross over to parallel park and reverse etc I get so much pain from my chest Stef has to swap over and do it but it’ll come in time, it’s still very early day’s. The seat belt is a pain in the ass too as it cant rest on my scar so that’s a fun trick!
Before I go, there are a few links and things I thought I would add, one being from the article that was printed in my local newspaper not long after I returned from Harefield, and the others some sponsorship all in the aid of CF!!
http://www.thisisdevon.co.uk/Donor-helps-Totnes-bride-Kim-breathe/story-16886443-detail/story.html
My brother, Leigh is running a half marathon in less than a fortnights time, for my local CF charity that helps CF Suffers & their families in Devon. EDCF Quality Of Life Fund, they have helped me immensely so I am incredibly grateful to this fantastic charity, unfortunately they haven’t got a Just Giving page, but if you would like to sponsor my brother please send payment to my email address through paypal with your message to kimberleyliane@hotmail.com or if you would like to donate straight to the charity please, please, please click on this link….. http://www.edcf.org.uk/make-a-donation
Also CF mum Lorraine Barnes has been working her ass off putting together a calendar for 2013 called Cfaces, full of inspiration Cystic Fibrosis fighters photo’s on each and every month! This is available to order now and is a beautiful calendar… All proceeds go to charity and my ugly mug features in December…. Please help support CF & order your copy today by clicking on this link … http://www.cysticfibrosisfundraiser.com/
I’ll leave you know with a few piccies of what I have been up too…. Until next time guys, I won’t leave it so long, I promise!
My brother Leigh (who is doing the Marathon for EDCF) & I
Me & Be-Be The Skunk From The Exeter Exotics Team :)
I walked down with Stefan to visit where my Nan, Poppop's
& Uncle Kevin's ashes were scattered on
the 3 palm tree's by The Cary Arm's in Babbacombe
Me & My Beautiful Freshly Shedded Burmese
Python Thunder, Just Last Night :)
Thank you for reading. xxx
Hope you can sort out your tummy soon! I agree that the clinic days are so hard to cope with and do wear you out, but when you get more time between appointments things do get better.
ReplyDeleteGlad to hear that you are getting out and about each day,and driving your car again:)once you get your operation to sort out the wire it will be easier.
Don't be to hard on yourself you will feel a bit down at times and that is normal given what you have gone through, just remember you have gone through it now, and things will get so much better!! it just takes time:)