Flying past the target!

Well the Team Jac sponsorship has been flying along this past few days thank to my very kind colleagues at DNUK. This is a doctors forum I use and I rather cheekily posted on the general chat forum about my sponsored walk and have since been inundated with sponsorship (all from people I don't even know) which has sent me flying over the £1000 target! I haven't really started my harassment campaign for sponsorship (which will come much nearer the time) and most of my team members will not collect sponsorship until after new year.....so looks like we need to set a new target! Go Team Jac!!

I have been to the gym twice this week, so have increased the treadmill to 15mins at 5.5km/hr (which is quite fast for my wee legs!), still 10 mins on bike, as I find this really hard and 10 mins on the rowing machine. I am so far enjoying myself, although it's finding the motivation to get yourself to the gym when it's cold, dark and horrible outside!

Dog training this week went very well and Seb got a lot of compliments :-) The head trainer (who microchipped him) said she couldn't believe it was the same dog she had first met. She did see him at his very worst though because to be fair he was fairly well trained to start with...I think she just got the impression he was a wild, unruly spoiled brat. The spoiled bit is pretty much true though ;-) He did a fantastic recall, stopping right in front of me to sit and then going round to end up on my left side in sitting position -he was the only dog who could do the whole thing, so I was feeling incredibly smug. I am rather competitive though and have been working hard at it! We now have to introduce randomly asking the dog to sit when you are walking - the idea being that by now they dog is quite complacent but they have to remember to pay attention to you at all times, as you might give a command. So far Seb is looking at me like I'm nuts - we walk along and I say 'sit' and he looks around as if thinking 'Who is she talking to?!' I said it again and he lowered his bottom, realised the ground was cold and stood straight back up! So at the moment I am having to push him into a sit even though he knows the command. He will soon get the idea though...he is just so stubborn.

I also had joint CF/Diabetic clinic this week. It was the first one since my transplant so it was a very strange experience. CF wise, everything was ok. They reckon the joint pain (which has got worse since started the gym) will ease off as my muscles strengthen and support the joints. I've had a few GI problems with cramping stomach pain but they upped my meds for that, so things should settle now. My lung function was 90% (was 97% in newcastle) but this is using a different machine, which also read my result as lower than Newcastle when I was up regarding the chest pain in September, so I am not worried at all about this. I was rather amused at the doctors response to seeing me for the first time though - she got so overexcited by the way I spoke, which is apparently very different to before. I speak much faster and use longer sentences but she said it was the most marked difference she had ever seen post transplant and she has know me 11 years!

I then saw the diabetic team who were a bit concerned about the random hypo's I am having (low blood sugars) coupled with unexpected high sugars. I have to monitor some fasting blood sugars to see if I need any long acting insulin and also rotate my injection sites more often as this can affect absorption of insulin and might explain some of my unexpected results. My friend Audrey had told me about a course where you learn to count carbohydrates so you can calculate the amount of insulin needed so I asked about this. They do have a 2 day course so are going to set me up on that, which I think will really help me! I am eating more than I did before and now have no idea how much insulin to take at times. The doctor did emphasise that I have NOT to follow a diabetic diet...I have to stick to the high fat CF diet and adjust the insulin accordingly, otherwise I will probably start losing weight again. This was good news as it means I can keep baking and then eating it all!

Yesterday I was at my friends wee girls 1st birthday party, which was fun. Orla is so so cute! She was pushing herself around on a wee wooden tricycle before deciding she would try and stand on it instead....I am sure she is going to be trouble when she is older! It was so lovely to be able to just pop along to something like that with no problem and no worries about how I would manage the stairs etc. These wee things just keep reminding me how far I have come.

Today I am off to buy some Christmas tree lights...I think the tree will be going up next weekend. I know that's quite early but I go home for Christmas and New Year so I have to get the benefit before I go! That's my excuse and I am sticking to it :-)

WOOOOHOOOOO!

For those who have been following my Just Giving donation page for Team Jac - the latest donation from Sarah and Gordon Brown is actually from THE Sarah and Gordon Brown. The Prime minister and his wife have donated to my team...how utterly fantastic is that :-) :-)

To explain, I may have written a wee letter to Sarah Brown to tell her about my walk - obviously she can relate to the issue of CF but it was also due to the fact Fife (where the walk will take place) is where Gordon Brown's constituency is and I hoped she would be able to support the team in some way. I am so so chuffed and very grateful for her help with this.....apart from a wonderful donation, just having that kind of backing is a big boost to the walk. Go Team Jac!

Back Home

I got back home on Wednesday night, after stopping at mum and dads for dinner (obviously!) and picking up my wee pooch. Dad has been continuing the heel work so there was no rest for poor Seb, although I am sure he gets more treats when I am away ;-) Dad has discovered that Seb LOVES corned beef (after he stole dads sandwich) so this is a new found motivational tool when I don't have any chicken to hand. He had dog training on thurs night but I had to go myself this week as Andrew has been working late every night, and today - Saturday - as he has a deadline to meet. Seb was acting up a bit at class and I'm not sure if it was because Andrew wasn't there watching - maybe he likes having spectators (like children wanting their parents on the sidelines!) He did really well at heel work, apart from the fact he has taken a dislike to one of the trainers and refuses to walk if she stands too close to him! She tried feeding him treats and although he took them, he then walked off before she could even pat him. So so rude. He was then very good at his sit stay, and down stay and would just lie there for as long as I asked I think. He finds this part rather boring though.

I then had to go to a room next door for a wee talk (we get dog ownership talks every week) so had to leave Seb with one of the trainers. Two minutes later and there is a wee knock at the door, and the trainers standing there with Seb under one arm and his collar and lead in the other - apparently he was so desperate to go out he slipped his collar and then wouldn't let anyone put it back on! He has never done this before! He does however have a terrible fear of anyone touching his neck after an awful experience at the vets where 4 people held him down for his vaccinations. It is very stressful as he gets so agitated when anyone 'comes at him' as if to hold or touch his neck and he gets hysterical. Fortunately the trainer was aware of this so just brought him to me before he got too worked up. Apparently he was fine after that, but I suspect it was more to do with the fact he has seen where I was and knew I hadn't left the building!

Lastly it was recall and this week I asked if I could get him to sit and wait, rather than being held by the trainer as he hates this. He does this perfectly at home but at training decided he no longer understood what the word 'sit' meant and stood there looking around as if rather confused. He did eventually sit and wait and then come when called, but it wasn't a very elegant performance so we must work on that for next week! Only 3 sessions left now..

I have received my appointment for the barium swallow, which is to look at how fast my stomach is emptying, This is the 9th Dec in Newcastle, but this can be tied in with my transplant clinic appointment so isn't really an extra trip. Fingers crossed the results are ok and don't interfere with the surgery. Strangely my reflux has been really bad lately as if to reassure me that I have made the right decision! Funny isn't it.

I also got my blood test results back from GP - everything was normal. They do a test (Hb1ac) which gives an indication of blood glucose control over a 3 month period. It came back at 6.4% which is really good (less than 7 is normal), although a few months ago it was only 5.6%. I am aware that my sugars are much more random now but am doing my best to control them. Unfortunately this means I have had a lot more low sugar episodes (hypoglycaemia) which are quite scary when they happen outside. I had one at the dog training and I had on in Tesco a couple of weeks ago, which was rather scary as I was on my own. I usually become light headed, shaky and confused. I had my dextrose tablets with me but even after half a packet my sugars were still rather low. I suppose the sensible thing would have been to ask a member of staff for a sugary drink instead of continuing to push a heavy trolley around ;-)

I had my second gym session this week, after my induction on Monday. They have set me a programme of 10 mins on treadmill at 4.5km/hr, 10 mins on bike (no resistance) and 8 mins on rowing machine, and then I can gradually increase times but have to just stick with these 3 machines at the moment. I already started increasing the treadmill as I find this one quite easy (due to walking seb) but the bike is really hard! I could do 10 mins shortly after the transplant but can't do any more yet - I thought it would be easier but I obviously haven't been working those muscles. I quite enjoyed myself and hopefully I will continue to go twice a week and start to see some big improvements soon!

My friend is coming for dinner tonight so that will be lovely to catch up. No where near as hectic as last weekend when 5 of Andrews friends came for the afternoon - to stay overnight. So I had fold up beds, blow up beds crammed into the most unlikely places! It was a really good night though and I think everyone enjoyed themselves. This get together has been cancelled twice already because of me - once because I was really unwell and then again when I had my false alarm. So thankfully it went ahead this time and I was able to help and make food and be the perfect hostess ...or something :-)

Good news is that my friend Louise finally got home from hospital last week after her transplant! It will be a slow recovery and lots of work still to do, but fantastic to have made that all important step :-)

Now, I'm off to work out how many days it is until Christmas.....

p.s Can't believe I forgot to mention this last week but I have some GREAT news about Team Jac. I was looking for sponsorship so that I can get (probably caps) something for the team to all wear so we are a 'group'. Anyway, the company Moy Park, who my aunt works for are sponsoring the team £500 to buy anything needed!!!!!!!!!!!!!!!!! How fantastic is that???!!!

Live from Newcastle

I'm still in Newcastle tonight following my endoscopy this afternoon and we will just head home tomorrow. I met with the GI doctor first to discuss what was happening (since I had just received this random letter in the post with no explanation!) As expected, he said I had been referred due to the results of study I took part in, which showed significant acid reflux. Basically there is a sphincter at the bottom of your oesophagus (gullet) which opens when you eat to allow food down, and closes afterwards to prevent acid coming back up. During transplant surgery the nerve which controls this can become damaged (the nerve runs down the chest) so the sphincter doesn't work properly - hence acid refluxing back up and causing symptoms. My case is a little different as I had severe reflux pre- transplant (common in CF) and am already on the maximum medical therapy (in fact I am on doses above those normally allowed) - this worked quite well pre transplant but since the transplant the symptoms have all returned. Based on this alone, I am a very good candidate for surgery - an operation called Fundoplication - this involves wrapping a small part of the stomach around the oesophagus to create a new sphincter. So the reason he is recommending the surgery is to help alleviate the symptoms, but as an aside, it may help reduce my risk of chronic rejection (although this is not reason enough to do surgery on someone).

He did explain the possible side effects post surgery, which did make me feel a bit more worried about it all! The sphincter will be very tight to start with and at first I will only be allowed to drink and then take sloppy food for first few months (not liquid, but things like mashed potatoes etc). Then I start introducing more normal things like pasta, fish etc. However it is quite possible I will always have problems eating heavier foods such as red meat, crusty bread etc. I may in fact not be able to eat them at all.....and I LOVE steak! Most people however can return to a near normal diet. The other issue is that the air from your stomach (that you swallow) can't escape so you get quite bloated. I don't like this one bit! I get this enough due to GI problems with CF. However on the upside, 90% of people have significant improvement in symptoms and usually come off their medication (although I might have to stay on it due to rejection risk issue).

The actual surgery itself is normally done using a laparoscopic technique - this involves 4 small incisions for them to put instruments through but scarring is minimal and I should only have to stay 1-2 nights. However he also took a look at my peg tube site - which is still leaking after 6 months!! He said that the stomach is adhered to the abdominal wall where the peg was and this might make laparoscopy impossible - in which case he will have to proceed to open surgery, which clearly is much more invasive and would be around a 6" scar (judging by the hand motions he made!!) I would have to stay in hospital around 5 days if this was the case. I will have to consent to both and will only know once I wake up which has been done. Normally the risk of needing open surgery is 1 in 40 but my risk is about 1 in 10. It would be really annoying if this happened as it would be a big setback for me - I probably wouldn't be allowed to go to the gym, to drive, lift things etc for few weeks but I will just have to take it as it comes. On a positive note though, he is going to staple the peg tube site from the inside to stop it leaking - as he said if it hasn't healed by now, then it's not going to. It will be great to get that sorted once and for all.

So, after all that discussion, I had the endoscopy this afternoon, which was just to check there was no reason I could not have surgery. He said that they found the sphincter was sitting wide open, when it should have been closed, so there was clearly a problem. Also however, he found food in my stomach and I had been fasting for 5 hours. This indicated that my stomach is emptying too slowly (another post transplant issue) which might affect the surgery. Therefore I will have to go back for some tests to investigate this - I think it involves drinking a radioactive fluid and then being x-rayed. Nice ;-) This should be done fairly soon. There are medications which increase gastric emptying speed so there should be something to help if this is a problem.

He did offer me the first date available for surgery, which was 19th Dec. However if I ended up getting open surgery then I might be in hospital at Christmas! No way!!!! So, I politely declined and will be getting it within the first 10 days of January instead. At least this means I won't be eating mashed potato for my Christmas and New Year dinners. Especially after I missed both of them last year due to being too unwell to eat, so am really looking forward to a great Christmas this year :-)

So, I'm not sure how I feel about all that really. I think he has painted the worse case scenario so that I am clear about risks - but hopefully it will all be plain sailing. It would be lovely to get rid of all the reflux symptoms and to be honest, if I didn't get this surgery and developed chronic rejection, I would never forgive myself. There must be a reason that I took part in this study...

I have other stories about starting the gym etc but will have to save them for later in the week. Enough for one night I think!

Spring Cleaning ....in November

So this week I have been on a mad clearing spree, which has seen me empty nearly every cupboard in the house! It started with a clothes clear out, which was well over due. I have been wanting to do it for a while (largely due to the fact I needed to make room for new clothes) but was waiting to see what kind of weight I stabilised at before I started throwing things away. I was fairly ruthless and a good few bags were filled. But that was just the start...I have worked my way round the whole house and found so many things I had forgotten I had! I also created an amazing amount of space in my hall cupboard when I finally got round to throwing out several boxes of overnight feeds and supplements that I no longer need. It's amazing how much space all my medical stuff took up. I do still have an entire (large) cupboard full of drugs but I can cope with that. It's very cathartic having a clear out...I have this notion that I need to get everything in order before January so I can start next year afresh. I like being organised :-)

Other big news is that I have joined the gym. Yes I did say gym. My physio referred me on medical grounds so I join a programme for the year and get a discount on fees. I had a consultation this week to discuss what I needed/wanted to do and on Monday I have my induction. Scary! I have never used gyms (bar the hospital ones) so it's all very new and intimidating. Everyone else always looks so fit! I have to start slowly and only do cardiovascular for the first month, and she suggested I attend the supervised sessions at first, so I can get some guidance. I will be reviewed at certain points to see if I want to add in anything else, like swimming (not keen) or classes. I really hope I enjoy this but the thought of my 10 mile walk is enough to spur me on!

Seb had his dog training tonight and he was really good! We had a different trainer tonight and she said that his walking to heel was excellent and that he must be a pleasure to walk!! I said he was, apart from the fact he runs barking at joggers. The suggestion is squirty water again - to take this on the walk and when he runs at a jogger he gets squirted! They will think I am mad but it's worth a try. It is so embarrassing because they probably think he is going to attack them, but I think he maybe just wants to run along with them ;-) He was great at his sit/stay and down/stay apart from the fact he gets bored after a while and starts looking round at all the other dogs, yawning widely as he does. So rude. We also started to learn 'the finish' for recall - where the dog is meant to come from sitting in front of you, round your back and end up sitting on your left side. We had to use treats to lure the dog round...but I only had to do it twice and he realised what I was asking him to do. I am not saying it's perfect yet but for the first go he was pretty amazing. I am rather bias though. The other thing we tried at the weekend was taking him to the country park with a 30m washing line (dog training suggestion) for practising recall. We were in a really quiet area with loads of grass, so he had free run to the end of the 30m. He loved it!! He was diving around all over the place but did come back each time I called ( I had treats obviously) so perhaps there is hope for him yet. I would love to allow him off lead in safe areas so maybe one day :-)

Here is a video of his recall efforts at the weekend (I am dressed like I'm on a trip to the Arctic because it was FREEZING)



On a different note, I had an unexpected letter this week telling me I was booked in for an endoscopy (camera test to look at stomach) in Newcastle for mid December. I phoned the transplant unit and the nurse said it must have been triggered by the results of the reflux study I took part in. I'm not that surprised because I still have bad symptoms of reflux despite maximum medication. Anyway, I then got a phone call today from the doctor who was doing the research and he said the consultant thought December was too long to wait, so could I go to Newcastle on Tuesday next week! I was a bit surprised but I suppose it's better to get this looked at sooner than later. The concern relates to the fact that reflux is a known risk factor for chronic rejection of the lungs (theory is that acid refluxes into lungs, which causes inflammation and scarring, which reduces lung function) so I do need to get this looked at. I suspect they may want to discuss surgical options for helping with this but I will find out more next week. I am not looking forward to the endoscopy though - I will take the sedation on offer, but if my bronchoscopy was anything to go by I will probably still be wide awake! However, I have had a few endoscopies in the past so I know roughly what to expect.

And for some cheery news - my friend Louise is doing much better now! She finally got out of ITU last week and had her tracheostomy tube taken out earlier this week...and they were talking about allowing her home at the end of this week! I have not yet heard if this is definitely happening but either way it looks like things are moving forwards at last! The other CF lady I wrote about just came off the ventilator a few days ago and has moved out of ITU to the transplant ward and is doing much better. I think she still has a way to go but is, at last, starting to improve. So good news all round :-)

Naughty Dog

I went upstairs and left Seb asleep on the footstool (he is allowed on this):




I came back down half an hour later and found him in my seat on the sofa, perched on top of a cushion! (this is definately NOT allowed!)




It's the way he is looking at me with such distaste.....seems like I disturbed his nap or something.

Trains and Fireworks

I had another post transplant first this week....I got on the train myself and went Christmas shopping in the city centre! It's been a long long time since I went on a train anywhere myself, and I'm not sure when I last went into town for Christmas shopping. The last few years most of it has been done on the internet, and last year mum wheeled me around the shops for some last minute pieces. What a completely different story this year! I wasn't even planning to go but my car was in the garage (again!) this week so I was sitting at home feeling a bit bored...then I suddenly thought, '0h, I can actually walk to the station and get on a train somewhere!' I was so excited I felt like telling the train conducter that I had a transplant this year and did he know how cool that was?! Only downside is that I spent more money (especially since I was on my own with no one to keep an eye), however I did get quite a few presents and I walked around for hours (carrying all the bags) and then had to walk back from the train station.....and I was still able to take Seb out!

This was especially impressive since on Monday I had been rather silly. I went out to put some bin bags out and saw the state of the patio...all covered in leaves. So I decided to sweep it all up and tidy in general, which involved a lot of moving around of garden furniture. I then progressed to raking the leaves on the lawn (the lawn is about 90ft long!) and after about 2 hrs I was near to collapsing and sadly it didn't look like I had done much! I had however filled the entire garden waste wheely bin - which I insisted Andrew look at when he got home to prove how much I had done! It was good exercise though and although I felt completely exhausted that evening, by the next day I was fully recovered. Amazing!

On a similar note, I was sitting here thinking about where I was this time last year, and I must say that last October was one of my worst months ever. I had a couple of admissions and one of them was the worst I have ever felt. I remember mum wheeling me into the hospital, me crawling into the bed and then refusing to get back out for the next 2 weeks. For anyone who visits me in hospital they will know that I usually get up and dressed no matter how bad I feel, but this time I just didn't move. I could hardly get to the bathroom with the breathlesness and mum had to wash me as I couldn't go in the shower or even stand at the sink. Half way through my IV's the infection markers started to climb again and I can remember how scared I felt, wondering if this was going to turn around. Obviously it did, and I am still here and still standing...but have come so far. It's weird to think that I have not had a chest infection since April now - longer than ever in my entire life!! It's a nice thought for such a dreary day :-)

Seb had quite a stressful week with the fireworks. He was ok last year, but this year he was out in the garden when one went off, and he got a huge fright and came diving back into the house. He then hid behind the curtain, in a corner, behind the sofa before finally curling up beside Andrew (even though he is not allowed on the sofa, and technically he was mostly on the sofa!) I did ignore all his antics, as apparently by reassuring the dog you are making them think there is something to be worried about. However I was quite bad and let him sit up beside Andrew, simply because he looked so sweet (Seb, not Andrew) and I felt really sorry for him.



Things are progressing well with Team Jac and I have a feeling numbers will be closer to 100! I will need to get these finalised fairly soon so I can work out places on the bus, which is taking us to the starting point. I do have the bus organised though (free of charge!) I am currently trying to sort out the toilet situation, as public ones half way through the walk are closed due to vandalism. Great. However, I am looking into this so hopefully we can find a solution. I also wrote to all the local businesses looking for sponsorship but sadly have had no response, which is disappointing. The only person to help was the lovely lady who runs a local beauty and health shop and she is giving me a gift voucher. I think I will have a wee competition locally with this as the prize (it will only benefit those who live nearby). I had no idea there would be quite so much organisation required, but it is all good fun and keeping me busy.

I will leave you with some pics of Seb wearing my hat...just because it is cute :-)

A Bumble Bee, Indiana Jones and some nuns....





I had another busy weekend! Friday night we popped round to Andrews gran's as Anne and John were coming up for a quick visit. I very helpfully offered to bring some dinner round, as they would be arriving quite late. I decided to try a new chicken casserole recipe. Cooking for other people is never a good time to try a new recipe! It was looking pretty good until I started reducing the stock and it just got saltier and saltier until I could hardly bare it - something to do with the entire packed of smoked bacon that I put in. I had a minor panic, until I decided to pour an entire carton of cream in...worked a treat and probably only added about 1000 calories or something ;-)

On Saturday we took Seb to the country park, as it was a lovely sunny day for the first weekend in ages. Everyone had the same idea and the park was the busiest I have seen it all year! This meant meeting lots and lots of dogs, but Seb got on really well and I think mixing with the dogs at training has really helped him. We were practising recall by allowing the lead to it's full extent, waiting until he was busy sniffing something or other and then calling him and rewarding him with a treat. He was doing really well, especially when he realised I had treats! I am hoping one day he will be reliable enough to be allowed off lead in safe areas. Maybe wishful thinking though.

We were at a Halloween party on Saturday night - me dressed as a bumble bee, Andrew as Indiana Jones and mum and dad were a pair of nuns ;-) It was rather amusing! My mum drove us to the party, so there was a pair of nuns in the front and me and Andrew in the back. Dad kept telling her to drive faster when we got into well lit areas in case anyone saw us. I was almost hoping we got pulled over by the police just for some comedy value.






We played that game where you wrap people in toilet roll to make them like a mummy - I had to be the victim for our team, since I am the smallest. I must say, it's rather claustrophobic being entirely wrapped in toilet roll - especially when they got me to spin round and round to make it quicker, and at the same time mum decided to wrap my head up so I had no concept of where I was spinning!



We also did douking for apples - i had a go at this, although could hardly get my head into the bowl because of the other lady's costume! This is me looking rather wet, and Andrew being force fed vodka jelly by the lovely Alison, because he didn't win his douking contest!




Yesterday we went to a new outdoor shop and I bought some walking trousers, waterproofs and Andrew got walking trainers...so we are all set now for some practice runs! Just need to find the time and the energy :-) There are lots of nice places to walk near where we live, so we really have no excuses. Speaking of walking, I am off now to take Seb out to practice his walking to heel and turns, haha. He is getting pretty good now and performed really well at his class last week. He did veer off to the side when doing recall though and at the last minute turned back and came right to me....I think he was just playing with us! Got a sense of humour that dog...