Tuesday, April 28, 2009

Annual Review...results now in!

No rejection detected at bronchoscopy, everything looked fine. Lung function was 2.73 litres, which equates to 99.7%!! I am going to get 100 one of these days ;-) X-ray looked fine, BP was perfect and oxygen levels 100%. Can't really ask for a better report!

The bronchoscopy itself was not too bad - I don't remember a lot. I do remember the 3 attempts to take blood and the 4 venflon attempts - but it still doesn't beat the 10 venflon attempts last time! She said I should wear gloves in the waiting room to keep hands warm - I told her I was wearing 2 jackets, gloves and a scarf in the waiting room!! Might try those hand warmers for next time. I believe I may have had 18mg of midazolam which is an all time record. It was given in 2 lots, which would suggest I became a bit chatty mid bronchoscopy. This sounds familiar. I was probably just making small talk ;-) I slept for a good few hours (funnily enough) but when I woke up was desperate to escape the ward. I asked the nurse looking after me, who said that was ok - so we headed to Pat's and spent the afternoon there before coming back about 7.30pm. I went to see Louise and mum took my stuff up to the ward - where she met the doctor. The very angry doctor. I was supposed to have had an x-ray (oops, forgot about that) so the nurse shouldn't have let me go. They had been looking for me all day! Mum then ran down to the ward Louise was on to send me back up, but when she got there the doctor was also there -who then thought I had been in Louise's room all day. I then totally enraged her by asking if the porters could not just get me from Louise's room so I could stay and chat! After a rather incredulous look, she did actually phone radiology and tell them where I was - I think she realised it might be nice for Louise to have a visitor hehe. It was lovely to have a good chat with Louise and we talked about all sorts and the time flew in. She is still struggling a lot just now and back on 24hr oxygen and having problems with her heart at the moment, which they are trying to treat. Keep the good thoughts coming and I hope a period of stability is not too far ahead now.

My CF doctor had written to the transplant consultant about restarting one of my antibiotics (azithromycin) because it has anti inflammatory properties which may help the sinuses and joints. The transplant doc was a little reticent as they tend to keep this drug in reserve should I later develop chronic rejection (very different to acute rejection, and tends not to occur until after the first year). He decided however that I should trial it at a low dose because there is a balance of relieving my current symptoms and thinking about the future. If it doesn't work, then I stop it but if it helps I can carry on long term. I asked about reducing my steroids but they are not keen to do this at the moment (mainly due to having rejection in past) so everything is really to continue as before.

We then had to dash over to the other hospital to see the surgeon about wound pain. He is sure there is no hernia but is a bit puzzled by me. There are a number of possibilities - he can feel the permanent stitch under the wound and it appears to have become knotted, but he didn't think that should cause as severe pain. It could also be due to adhesion's (scar tissue) or the pain might be getting referred from somewhere else - abdominal pain is hard to localise as you often feel it in an area remote from the problem! My peg tube wound is a likely suspect as he tells me that it was extremely inflamed around the stoma so he removed copious amounts of muscle, which he would expect to be sore! Alternatively it could be pain from stomach. Because the pain comes on after eating, the first step would be to do another endoscopy and look into the stomach. He could do this very soon but unless the pain gets much worse I am going to wait until my next outpatient appointment in 3 months because I just need a break from procedures at the moment and I am kind of hoping it all just settles down (as is he!) I can just call if I want it made sooner though.

So, I am now back at mum and dads and Andrew is coming to pick me (and Seb) up after work. I am so so tired after a hectic few days and getting virtually no sleep in hospital last night, so straight to bed. Then work tomorrow.... !

Monday, April 27, 2009

Party Weekend!

I had my big celebration party on Saturday night - to celebrate both my 30th birthday and 1st transplant anniversary. It was also my dad's 65th birthday so I allowed him a small piece of the lime light. Just a small piece though ;-)

I treated myself to a french manicure on Saturday morning before heading to mum and dads for lunch time. My aunt and uncle were up for the party, as was Corey - so we all had a nice lunch/dinner in the afternoon. It was then a bit crazy as we all tried to get ready - myself and mum having to go to the Vigil Mass before the party as I was doing an appeal for the Team Jac fundraising. I had all my make up done before Mass and did wonder if the glittery green eye shadow was appropriate for getting up on the altar ;-) It was a quick dash to finish getting ready and then dad dropped me down at the party, with everyone else walking down. I might be able to walk without getting breathless now but I still can't walk far in high heels!

The party was great and the time flew in - I hope I managed to speak to everyone and I did try my best! I wanted to spend so much time with all my friends and family and there just wasn't enough time. I did however manage to dance....a lot :-) No breathlessness, no tiredness and no coughing. At uni I loved going out dancing but even then I didn't have nearly as much stamina and would need to sit down between songs. On Saturday I hardly sat down at all! It was a lovely night and hopefully everyone enjoyed it as much as I did. A wee thank you to all those who travelled so far to come as well - you know I really appreciate it :-)

Me and mum before the party


Me looking strangely excited about cutting the cake!


Dad getting his cake!


Me getting my tuppence worth in...


Me with Andrew and his mum and dad (Anne and John) and my brother in law Ross



Once back home it was about 2.30 am before I got to bed, and I still hadn't even had time to open all my lovely presents! I had to be up for 9am Mass though as I was speaking again and also at the following Mass. I think that gives me Holy brownie points for quite a while. I felt the talks went well and there were a few tears in the congregation. I hope I also got across the important points about organ donation, so that perhaps another life can be saved from someone making that wonderful gift. From donations made at the 3 Masses we raised an astounding £2125 which I have added to the offline total on the just giving page - taking us well over the £7000!!!!

Following Mass, I caught up with Andrews friends and then by the afternoon I finally got to open my presents! I am overwhelmed by all the lovely gifts and I also received lots of vouchers so am building up to a massive shopping spree. It's going to be a good one!! I think I should start clearing my wardrobe now in preparation. I had lots of helium balloons from the party so we stood on the veranda and let them go....I think you are allowed to make a wish so hoping that everyone's wish comes true.



We then had some dinner and headed down to Newcastle - we were so tired that I just had a shower and headed to bed as soon as I could. Up at 6.30 am this morning to get to clinic for 7.30am...talk about an early start. The bronchoscopy went well but I will not get results until tomorrow at clinic so will do a full update once I am back home. It looks promising so I am hoping for the all clear and a glowing report to round of the celebrations.

Saturday, April 25, 2009

First Anniversary

Well today is a huge mile stone - the one year anniversary of my transplant. At 3.45am on the 25th April the call came and I started on this amazing journey. Although I have so much to reflect back on I will leave that for another blog. I am looking forward to the celebration tonight and feel so grateful and so happy to have reached this stage.

I would like however to leave this entry as a remembrance of my donor. Without her generosity I would not be here and for that I am eternally grateful. I planted an azalea last year in her memory and in the last few days the buds have appeared and it is ready to flower. Please spend a moment to think of her and her family today, and to think of those who have not been as lucky as myself. I also pray that the call comes soon for all those waiting on that gift of life.

Wednesday, April 22, 2009

Wicked

We all had a great weekend down at my aunty's and it was a lovely way to round off mum's birthday celebrations. We had quite a long drive down on Friday but arrived to a fantastic meal - everyone had Beef Wellington but because that has pate in it I had steak instead....first time I have had it since my fundoplication and it was bliss!

On Saturday we headed into London for lunch time and Corey came to meet us as another wee surprise for mum. Lunch at Harrods (of course!) was lovely and we then went to the matinee performance of Wicked. It was a fantastic show (it's the story of the wicked witch from The Wizard of Oz) and everyone really enjoyed it. I think dad only fell asleep a few times ;-) On Sunday we did a bit of shopping and I managed not to get carried away. I did buy some new make up with my birthday money so I can glam myself up for the party on Saturday.

I picked Seb up on Monday - he gave me the cold shoulder and was very huffy! He did however have a great time at Gillian's and was up to all sorts. I think the worst incident by far was the stealing of her dad's salmon fillet. Yes, you read that right. Her mum had put the plates out on the table which was left unattended for a few moments and Seb was up on the table and grabbed the whole fillet - then ran. How embarrassing.

I have now found the link the online version of the local newspaper article. Embarrassingly when I went for the ultrasound today the nurse asked if I was the lady from the paper haha. Then I went into work and found the article photocopied and sitting on the reception desk for everyone to read - all good for awareness though! The money is still coming in for Team Jac and we are flying over the £4500 mark....go Team Jac :-) Click here for article.

I had my ultrasound scan this morning and they couldn't see anything wrong at the scar site. This is good news but in one sense is rather annoying because I am still getting lots of pain at that site when I eat or walk. I am seeing the surgeon on Tuesday though so will just have to wait and see if anything else has to be done. I am getting a bit nervous about going down to Newcastle and getting my year bronchoscopy - the apprehension that they will tell me something is not right when I am feeling so good! I would rather carry on in blissful ignorance. Hopefully there will be nothing but a glowing report but I will just have to go with the flow and take it as it comes. I am however looking forward to hopefully seeing Louise, as she will be at clinic the same day. She hasn't been doing very well and has been in her local hospital for the past few weeks - her liver is now playing up which is something she could do without just now. So keep the prayers going please.

I have had some good responses about the CF booklet - one of the consultants has contacted me about getting more printed copies because he thinks all his patients should have one! Also one of the doctors who helped with the booklet is hoping to link to the online version in a journal article that is due to be published. It makes me feel like all the hard work was worthwhile.

Well it is set to be a manic weekend so I may not be able to update until after I get back from Newcastle (hopefully Tuesday night if all goes well). I am heading to mum and dads for lunch on Saturday and the party at night, before heading to Newcastle on Sunday. In between all that though I am speaking at three Masses about the walk - the vigil and two morning Masses, so I am going to be busy busy, and rather tired!

I will leave you with a picture of Seb looking angelic...


Thursday, April 16, 2009

Birthday Girls

Wow, it's been a very hectic few days! I had a lovely birthday weekend and although I am now 30, I still don't look anywhere near that age - a patient at work called me a 'wee lassy' the other day ;-) On my birthday I went out for lunch in Edinburgh with some friends, which was lovely. We went out for a family dinner on Easter Sunday and I am having a 'double celebration' party next weekend - to celebrate my birthday and also my 1st transplant anniversary which will be on the 25th April (also my dad's 65th birthday!) I can't believe it has nearly been a year since the transplant - the time has been flying in but it has been a fantastic journey and I am looking forward to what the next year will bring.

Andrew had Monday off work so we went on a long walk in preparation for the big day. I did really well but I was very sore the next day! Not so much the muscles but my knees and hips really flared up, which was a bit annoying. It has eased off again though so no pain no gain eh? The walk was lovely - we really only have to walk about 10 mins from my house to get fantastic scenery. Seb of course had a great time and seemed to manage it no problems, so I am hopeful he will be able to do the 10 miles. Maybe he will have to carry me :-)


Saw this plant on our walk - anyone know what it is?


Tuesday was a special day - my mum's 60th birthday! We headed to mum's in the afternoon and she opened her presents, which she was really pleased with. One of my gifts was a photo album I got made up with the story of mum's life - photos from when she was a child and then through the years - I think it brought back some good memories :-) We had quite a few surprises lined up too! We had a big family dinner booked but what she didn't know was that her sister had come up from down south (mum thought she couldn't make it) so she was so happy to see her at the restaurant! I had also made little paper gift bags for everyone at the meal with small gifts, so that went down really well. She also found out we are all going down to her sisters this weekend, with a day into London to have lunch at Harrods and go to the west end show 'Wicked'. Not only that but she also got a surprise weekend in Amsterdam for both her and dad, which we had been making lots of lies about to make sure she had kept that weekend free! There has been a lot of secrecy - I am worried by how well I have been managing to lie. After the meal we had lots of family and mum's friends at the house and a great night was had by all :-)

I finally have a date for my abdominal ultrasound which will be next Wednesday, so hoping that will shed some light on the pain in my wound - it is now getting sore after I eat which is not a good incentive for my gaining weight! I will be seeing the surgeon soon so should know a bit more after that.

Other news is that the article on Team Jac was in the local paper and I thought it was pretty good (apart from the error where they said I founded the Live Life Then Give Life' charity ;-)) I couldn't see it online so will try and scan it when I am back from the weekend away.

So, off to bed now as have an early start to drop Seb of at my friend Gillian's - she may regret agreeing to Seb-sit! The heading down south for what I am sure will be a lovely family weekend!

I will leave you with a picture of my new ring (since some people asked me to post it!)



Wednesday, April 08, 2009

Catching Up

The organ donor day campaign was a big success and there was a 15 times increase in the normal daily sign up rate with 3222 people signing up! I tried to do my little bit by handing out some leaflets and transplant UK pens at work. I did manage to interrupt a meeting though - bursting into the room shouting 'free pens' before realising there was actually a meeting taking place. Oops. I perhaps should have apologised and left immediately - instead of apologising then going round handing everyone a pen ;-)

Tomorrow I am meeting with the local MP, Jo Swinson, so that the local paper can take a picture of us together. I spoke to the journalist on the phone so there should be a little feature in next weeks paper about Team Jac - I will post link if it's online. Hopefully it will raise some local support...and sponsorship :-) I have been sorting out action plans, group lists, maps etc for the big day so hopefully everything will run smoothly. It is rather like a military operation now - I think I will take a whistle on the day ;-)

The printed copies of the booklets arrived and I am really pleased with them - they look great (if I do say so myself). It is worrying that am generally more excited about my little stick men illustrations though ;-) I have made a start today in sending them out to CF units in the UK - there are about 23 large centres and also some smaller units so I am a bit googly eyed printing out online postage but should get that done by the end of the week - I started this project before I had my transplant so it is nice to be completing it in the run up to my first year anniversary.

It's my 30th birthday on Saturday - I can't believe I am nearly 30. The average life expectancy for CF is 31 years old - I intend to blow that one out the water and for the first time can seriously believe that to be true! I am going to have lunch with friends, then dinner at mum and dads and going out for dinner on Sunday with family. My ring arrived early but Andrew won't let me have it until Saturday - not fair!! I am looking forward to a good weekend though:-)

I will leave you with some pictures of Seb. He was being very quiet in the garden so I opened the back door to see what he was doing - he was sitting up in the chair like this is a very normal thing for a dog to do. He isn't really a normal dog though..


Monday, April 06, 2009

Donor Day - Tuesday 7th April

Holly Shaw received a kidney transplant in October last year after waiting 4 years on the list (receiving dialysis three times a week). While recovering from her transplant in hospital she heard the news she had won the Battlefront campaign. This is a Channel 4 programme allowing young people to fight for something they believe in. In this case Holly chose organ donation, and so the 'Gift of Life' campaign was born. She has done so much work already but one of the larger campaigns is for tomorrow - "Donor Day" - where people are setting up stalls all around the country to educate and sign up people to the organ donor register. The theme being "Become a 2 minute hero" - because that's all it takes to sign the register - the same amount of time as it does to boil the kettle for a cup of tea...





So, go on.....put the kettle on and sign the register!

Click here for donor register
Click here for Holly's blog
Click here for Gift of Life webpage