Thursday, 21 April 2011

long catch up! with pics!

Edit: So this post looks ok on Facebook but for those that didn't know every highlighted word has a link or picture attached to it :-)
So I'll start my catch up with lunch with Holly. Every get together from holidays to lunch I think we have ever arranged has fallen through because I've not been well enough. Well on April 8th I was well enough and we met, mums and all at TGI Friday's. A place I've been to before and knew Holly would love. We had a lovely lunch and the food didn't disappoint :) I gave Holly a little gift I'd bought a while back on the late Jessica Wales' birthday. TMD had a significant meaning to Holly and Jessica, Holly has TMD tattooed on her foot and I think it was also played at Jess's funeral. How strange it was that I just happened to see the gift on Jessica's birthday, I knew I had to get it and knew instantly who to give it too, I almost felt like Jess was trying to tell me something!
Myself and Holly at TGI Friday's
Next I was at the Newstart gathering. That was on April 10th it was the Newstart 'Christmas' party, held on a warm sunny day at the marriott hotel just beside the airport. It was so nice to be able to go, my first get together since being home with my fellow transplant patients that are now friends. We all sat around large tables and just chatted, there was around 150 people (patients and relatives) there and apart from myself a couple of people in wheelchairs and also another on oxygen you would just never know what some of us in the room had been through to get where we are today, to be alive and well. One guy on our table was 20yrs post heart transplant, just amazing! I got a picture with my special man :) and collected my transplant lapel, a small pin with the Newstart logo in gold and silver awarded exclusively to recipients with pride. I felt proud to be alive and a recipient that day.My transplant lapel
On April 15th my brave and foolish (!) little (17yrs old) cousin brought the newest addition to our family into the world. Bailey (how beautiful is that name?) was born after an overnight labour weighing 6lb 13oz. I'm very close to my cousins, I think because my mum is so close to her brothers and sisters and I'm an only child. So when we heard he had arrived I nagged mum to take me out so we could spoil him :) I sent a photocard to my 36yr old auntie congratulating her on becoming a nanna and one to my nanna to congratulate her on becoming a great nanna. My auntie is the youngest in her line of brothers and sisters and so her becoming the youngest nanna is an oddity! But there you go 'anything but ordinary!'Bailey
It leaves me feeling somewhat out of place, I'm the eldest female of the next generation in the family and I feel like I should be the first or one of the first having the children, not my younger cousins. But then I guess that's just not the way my life has mapped out.
Obviously when Bailey was born the rest of the family were keen to meet him so one of my auntie's came over to stay, most of my family live in North Wales. She got to us late afternoon and we ordered in Chinese and we settled down in front of the TV to watch Britain's Got Talent, glass of wine in hand (not me though mind!) A couple of the neighbours came over, it was Manchester Derby Day and so the drink was flowing nicely. Towards 11pm mum jumped up and said "omg your IVs!" She had premixed them and they were all ready to go I just needed attaching. Mum put on her gloves and went to flush the line and it wouldn't flush... She tried and tried but it just wasn't going so instead we tried drawing back on it. Usually my port has a good backflow, blood comes out of it very easily. Not that night, it wasn't budging, I got about 2mls of blood then just air. We phoned the ward and they advised us to go to A&E. They phoned the duty manager ahead due to the complexity of my case and advised us to go straight to triage when we got to A&E and a chest doctor would have a look at the port. I was reluctant to try flushing it again due to the air in the line but knew if there was blood in the port by the morning it would have clotted and so I'd have lost the port and would need a new one putting in. Everyone in the house par myself had had a drink! Awesome, any other night of the week (and most weekends) they'd all have been sobber! By this time I was tired and felt like I'd spoiled the evening for everyone, I started to get upset by the whole situation. My heartrate was already racing from my late evening nebulisers and as it started to race more with me getting upset my hands and eyes started to feel a bit floppy. I've giggled at it before when I've read it on the back of an 'directions for use' label on the back of an epipen label but an 'impending feeling of doom' was one I've experienced before (I've had anaphylaxis before) was the best way to describe it and I barked at mum to get me an ambulance. By the time she'd got through to ambulance control and my auntie had reassured me and helped me concentrate on just breathing I was fine. I was infact about to slip into one big panic attack. Pre transplant I never had panic attacks, just recently I've had one big one and get feelings I manage to breathe through at least once a day since I got home. Something that could do with better control I think, anyway if not for my auntie at that moment I think I would've had one big panic attack. I love my family.Myself and auntie K
Anyway by the time a sober family friend had been found to take me to A&E it was 11.45pm. To cut a very long story short the chest doctor managed to get hold of one of the night nurse practitioners (NNP) that knew me well and one flush with heparin, an anticoagulant was all it needed. The NNP gave me a vile of heparin to hep-lock the port overnight. I got home at 3am, tired, stressed and emotional. What a night.
On the health front I had clinic today. I've just felt generally run down breathing wise since getting home, OK in myself just not as good as I was in hospital. I raised the question recently over my antifungal treatment. Out of three bugs I've grown since transplant two of those we're fungus. My antifungal treatment was until I left hospital Caspofungin IV because I grew a simple Candida in my lungs whilst in hospital. I'm unable to tolerate the other commonly used conazole drugs (Itraconazole and Voriconazole) due to the side affects so when I went home my antifungal cover stopped. But there is another drug on the market now that's becoming more commonly used, Posaconazole. It's said to be well tolerated and is easier on the body than the other conazoles. Today my consultant decided going on that would be a good option, he sent an email to, I'm going to call him the 'bug man' because off the top of my head I can't think of his actual title! But he's the guy that has to give the ok to start this drug, in the mean time and since I've been feeling a bit off he restarted my Caspofungin IV to see me through to the cross over to Posaconazole.
Well I hope your still with me after that long and varied catch up! I'll leave you with a snap of me enjoying the late afternoon sun in the garden the other day.

Friday, 8 April 2011


Doesn't everything seem so much easier when the sun's out and its warm? This temperature, around 12'c-15'c suits me perfectly at the moment, not too hot and not too cold.
My life really is a full time job of planning at the moment. Everywhere we want to go takes a day to plan in advance. I made it out to the Trafford Centre for I think a well earned shopping trip the other day. I have inherited a mobility scooter from my grandad who passed away recently and I have to say it's a gem. I despised them pre transplant and refused to use one, I have no idea why, I just didn't like the stigma attached to them. They seemed to make me feel 'more disabled' yet I was happy to sit in my wheelchair? The mind boggles!
We planned and measured the night before and managed to get a large 2ft oxygen cylinder (weighing 15kg!) sat between my legs and my liquid oxygen cylinders on the arms of the scooter which gave us more than enough time. I had teething trouble with the accelerator getting caught on the cylinder (scary moment) and managed to take out a rack of scarves in Accessorize (embarrassing moment) but had a great day. We also had lunch out, something that a few months ago would have been a challenge for me. I still require highflow oxygen so eating is still a challenge but I've managed to solve this myself by purchasing a Biflow mask. (I must buy more of them now because otherwise I won't be able to eat!) But my nausea since the transplant has been the main problem, I'm PEG tube fed (or at least topped up) because at one point it was so bad I was retching up NG tubes and kept very little diet wise down. Since going on a subcutaneous Nozinan infusion it feels like a switch has been flicked, I feel 'normal' after eating and the thought of going out to eat doesn't scare me. The difference has been amazing and as long as the pump doesn't leak I'm rarely sick now.
I feel so much more positive being at home and although at times it is far from easy, I can say the lungs are damaged and my god there are moments I can tell (by that I mean at times the symptoms are very noticeable!) it's worth the hard work just to be around the people I should be and be in the place I should be in.
I saw the team (or one of the doctors anyway) on the ward on Monday for a review. At the weekend I contacted the ward after 'not feeling right' on Friday night. I couldn't say exactly, just I was panting more and my heartrate was raised. I feared my CRP (marker for infection) had risen again and I wanted bloods doing to be safe. After some persuasion it was agreed I could go to the ward and have bloods done from my port. Come Monday we had the results, of course I was right, my CRP had risen only slightly but enough to warrant an IV change. So now I'm on IV Tazocin and feel better already for the swap.
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