What a week! I'm going to start with at Tuesday May 17th, the day wasn't really significant itself, that evening I received a message off friend we'd met through our transplants some 10mths ago now. She was 22 and we were in hospital together when she got her much needed heart transplant. She sent me a message saying she wasn't well and was at clinic the following day for a biopsy. We exchanged a few messages and I was shocked she hadn't gone to clinic or even A&E if she felt as unwell as she said she did. I suggested maybe she should and she said she wouldn't know where to start and she'd be ok to wait for clinic where they knew her. And so I wished her well and that was that. The following evening I left a message asking how her biopsy had gone and was planning to pop up and see her if she was in hospital, I had a feeling she would be as she really didn't sound too good. A couple of hours later I got a message off her sister she wasn't well enough for the biopsy, was taken upto the ICU and passed away suddenly just hours later. I was shocked to the core and burst into tears. What if I was the last person she spoke to? Should I have pushed her more into getting help sooner? A million and one questions now I could ask but I know I'll not get the answers to them. For now I'm not going to say anymore on this just may she rest in peace xxx
The following day was Thursday, Thursdays are of course clinic days. Clinic was not a nice place to be in that day, my friend's death the previous day had clearly left its mark and shaken up everyone involved. Anyway this particular Thursday I was double booked, clinic and maxillofacial (dentist, I have a nasty broken tooth, my normal dentist will not come anywhere near me!) So it was just crazy. I got checked in at 9am, got my bloods done and my port needle changed, then dashed off to maxfax and saw the dentist and tried to hurry them along so we could get back to transplant clinic in time to see my consultant before lunch. Mum then had to leave me in reception, I threw my tablets down whilst she went to pharmacy and to the ward to get IV supplies. By this time it was 1.30pm and we were just leaving. We stopped off to pick up some lunch and then left for home just in time for my IVs and the district nurses turning up to change my Nozinan syringe. By the time my IVs had gone through I was shattered and it was around 4pm I had a nap and before I knew it it was 5.30pm, mum had nipped out to pick dad up from work. She leaves me for 15 minutes twice a day to fetch dad to and from work. After having such a mad clinic I realised I'd forgotten something, I hadn't had a chance to have any of my nebulisers all day. I do have a portable nebuliser but we left it in the car during clinic and I just didn't even think about it. I could feel my lungs getting tighter and tighter the space to breathe just felt smaller and smaller. I used to have wheezy type, asthmay attacks before my transplant, this didn't feel like that. It didn't feel like airway closure just restriction the only thing I could think to do was nebulise, I started setting up my neb, trying not to panic, of course nothing was to hand and I struggled to rip open the nebulisers. By this time I was gasping, I'm still learning and getting to know my post transplant lungs and just didn't know what to do. Thankfully the nebuliser kicked in with a good affect within a few minutes I felt almost back to normal but whatever it was it was a very nasty episode and left me in tears and exhausted. I just went and flopped on my bed. Just... No words.
Next day (Friday) I had an appointment at the hospice for some reflexology, finally a treat and a chance to relax after the previous day I'd had it was just what I needed. I hadn't relaxed that much since well before my transplant, it was just amazing. Afterwards we decided to go out for lunch, I wasn't feeling 100% though, I was getting random shivers. By the time lunch came I just couldn't eat it I was forcing it down myself. I couldn't think straight, I had goosebumps from the shivers I was getting and just felt outside myself. We asked for a 'doggy bag' and paid the bill and left. When we got home mum phoned the transplant unit for advice, the doctors advised we went to A&E but did mention my consultant was on call in the morning and I could 'drop in' for the ward round if I wanted to see him. I hate going to A&E, transplant is such a specialised field, my case is already complicated as it is, I'd freak most A&E doctors out with my medication list alone. So I decided to have some oramorph and just sleep on it. I felt better after my nap and decided to wait to see my consultant in the morning. We arrived on the ward for 9am and had a chat with my consultant, he decided I needed extra antibiotics, my heartrate was high, my blood pressure was high, I was shivery and my lungs were crackling I just generally wasn't well. So I was shown to the 4 bedded bay and that's where I've spent the past week.
Generally its been a bit of a crappy week. I been through every possible emotion following my friend's death and its been hard to focus on just getting well but a reassuring chat with the lovely Holly has put my mind a rest and I know now I did my best and I couldn't have changed what happened. Health wise I'm going to be here sometime whilst the team figure out exactly whats going on and this blood pressure and heart rate trouble which seems pretty persistent and annoying now. They are as usual pulling out all the stops to get things sorted and I have to say I couldn't feel more safe. They are experts and don't miss a trick. For now I think I'll leave it there!

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.