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I'm not gonna put a dampener on my blog, I love Christmas but this time of year was never going to be easy I suppose. Today in my minds eye was one of those days I thought I'd never see. This time last year I was on a high dependency unit in hospital and not very pleased about it. I pushed the hospital Christmas dinner to one side in a complete huff. I had caught pneumonia from a previous admission which is another story altogether...
In summer 07 MRSA managed to get through an arterial line in my arm, it travelled into my hands and all my fingers causing a deep cellulitis infection around my hand and all my fingers. I couldn't even put my hand on the bed to move myself about, it was red, swollen and very painful. After months of strong antibiotics it cleared up from all but one of my fingers. Around October time my index finger was still red and by then looked a little deformed. My Dr just shrugged it off as remaining infection but said he'd do an x-ray to rule out other possibilities...
The results weren't good (I will upload the actual x-ray taken when I go on my other laptop) and as soon as they came in I was referred to an orthopaedic surgeon. He told us MRSA had caused 'bone death' in the last bone in my index finger and because of chemotherapy treatment I was waiting to have for my lung disease it needed to be completely eradicated, if it was it could re-enter my blood stream it could cause serious septicaemia. He agreed one more week of antibiotics and if it was no better further intervention was needed. Surgery, I said "erm I doubt very much my lungs would cope with that!"
"No" he replied "under local anaesthetic". I don't know what sounded worse. Long story short I had the first of 2 operations. The first not being very successful, he had to remove so much dead bone that the joint collapsed and my finger just looked more deformed. The second one proposed to go ahead in late November still has some mystery about it as to exactly what happened and what went wrong. I was last on the surgical list on a cold day last November. Due to the nature of the operation I was told I'd need K-wires to hold the healing bone in place as he planned on removing the joint completely and pinning raw bone edges together. Due to the fact the wires needed to be left in place for upto 6wks I needed good antibiotic cover. I remember spending the best part of a day on the surgical ward and being terrified but knowing I was in safe hands...
Various Drs came to try and get some IV access for the antibiotic, Vancomycin which I've had on many occasions for MRSA. All the Drs that came to get IV access failed including some ICU Drs. So it was left to the anaesthetist in theatre. Late that day I went down to theatre, I remember saying goodbye to mum and being wheeled into the anaesthetic room. I remember being attached to the cardiac monitor, the Drs preparing the local anaesthetic and the anaesthetist began slapping my arm in a bid to bring up some veins. The next thing I remember is looking at a clock... I had no idea where I was, who I was, I couldn't speak, I couldn't move, I had gathered something somewhere had gone wrong but I didn't know what. My bottom lip felt as someone had punched me in it and my throat felt as if I'd been strangled. As I started to come round more I started to listen to conversations. I heard the words 'brain damage' and 'cardio-respiratory arrest' thrown around a few times but I didn't actually believe they were talking about me. I tried to speak but as I opened my mouth the words just didn't come out. I scowled back at the clock. 2hrs had passed, what had happened in 2hrs? Where did they go? Some hrs later in the ICU my parents explained what had happened. I had suffered a serious anaphylactic reaction to the antibiotic. I had swelled around my face and throat I then stopped breathing, my blood pressure dropped and my heart suddenly stopped. The sore lip and throat were from the breathing tube that was quickly inserted. I was without a heartbeat for almost 2 minutes which had caused oxygen starvation to my brain and hence the reason why when I was told something a few minutes later it would need to be repeated... I was suffering from mild short term memory loss from the trauma and oxygen starvation. I remember very little about that time, I don't even remember not being able to breathe in the anaesthetic room. Also other details, some I wish I didn't remember and the fact that 7 days later the operation went ahead and was successful. My memory did fully recover but is now not 100% due to the morphine I take. Unfortunately the stress my lungs had been put under that week led to me developing pneumonia which led to me spending Christmas 07 in hospital. I believe it left some lasting damage behind which I feel has contributed to my rapid deterioration this year.
I'm glad to be spending this Christmas at home and on a years reflection I'm proud to tell you about what I've managed to live through...
Today I went to the hospice Christmas party. The amount of effort the staff had put in was truly amazing. The day hospice room was already beautifully decorated but today so were the staff! They laid out a buffet for us and I actually ate something! Matron came over and said "your eating something... oh my god!" Yeah, ok, my appetite isn't what it was these days. I realised that my rather small appetite has had an impact when yesterday I had a mad dash to the nearest Newlook when I found that what I was actually going to wear to the party no longer even fitted me. Oops.
There was entertainment too, apparently the Spice Girls had been asked to come but they couldn't make it so they asked their mums to come instead but 2 of them couldn't make it, ill with arthritis, 3 of them did turn up and danced around to Spice Girls songs. It was infact 2 health care assistants and a physio assistant in a wig and strange looking outfits... I will put a video up when one of the staff nurses sends me one...
The sister also put on a policeman's hat and we sang (or mimed in my case, no one would hear me under an oxygen mask anyway!) along to the fat policeman song. I have no idea what that was about... Then santa came round and handed out presents, I have a sneaky suspision it was actually the hospice consultant but I couldn't tell properly so I will investigate that one on Tuesday!
After that some of the nurses got up to Jive. The lady I sat next to, M, who also goes to day hospice on a Tuesday is also an oxygen patient at that point got a little teary "I used to be able to Jive" she sobbed. Up until that point I hadn't really thought about how potentially sad such a party could be for some of the patients. It was after another comment from M about some cards she'd had printed that really made me think, she'd had some cards printed and they had spelt here name wrong, she sent them back but didn't think the correct ones would arrive in time but they did and she had a mad rush on her hands to get them out to people because she feared she may not be here this time next year and she said "nobody would want cards with my name on when I might not even be here this time next year". She seemed so blasé about it but I could tell that it was really affecting her. It was at that point I looked around the room at the other 40 or so patients smiling faces and thought, she's right, there's a good chance alot of these people might not even be here this time next year, myself included. I also got a little teary then too but when asked if I was ok? I said it was the heat and one of the nurses opened a door for me. I peered out into the garden and held back the tears.
I had conversation later with another lady that also goes to day hospice on a Tuesday. She's a cancer patient who has been battling cancer for a few years now, along with myself she's probably one of the youngest patients at the hospice (ok so there's still 23yrs difference between us but on average there's 50 odd years between me and other patients!) and she was telling me about her 12yr old son at school. They had an assembly and one of the teachers asked what a hospice was? One of the kids put their hand up and said "it’s where people go to die..." the teacher then agreed. She said her son was sensitive as it was and he went home and questioned her about it. She said with tears in her eyes "I said to him I'm not dying but I could tell he didn't believe me. I phoned his school and explained to them exactly what happens at a hospice and asked them to at least have a word with him and his class". Having said what I've already said in this blog I guess it shows what sort of a variety of patients the hospice really caters for and what some of the different needs are of the people that go there. In my eyes the hospice is a happy, lively, beautiful place that I'm glad to attend. It’s a place of life and peace. Today I saw people with all different illnesses come together and every single person in that room at some point was smiling, even the ones that couldn't speak, smiled too. That to me says alot about what hospices are about, although some people will spend their final days there, it is a place of life and a place that should not be feared.
I'll leave you with a short clip of some of the staff that made today as wonderful as it was…
Remember most hospices rely solely on local fundraisers and donations and receive very little funding, if any from the government. To make a donation to Willow Wood Click Here.
Today I took a trip back to where it all started. Booth Hall Children's Hospital, high dependency unit (HDU). I went back to see one of the members of staff I've kept in touch with. It was a bit surreal going back. I haven't been onto the unit for about 4yrs. As soon as I turned age 16 and left school I was transferred to adult care. The transition was not an easy one. But at the time my diagnosis was an adult lung disease, I was wrongly diagnosed with Idiopathic Pulmonary Fibrosis which usually affects adults age 50+ and has a very poor outcome. So I moved to an adult hospital not far from Booth Hall and never really went back again. Then recently a couple of the HDU staff added me on facebook and we have been in contact ever since. Being on that unit changed my life forever, whether I liked it or not. Going back today was strange, nothing about the unit has changed, and even the monitor alarms sounded the same. The staff member I went back to see today had been keeping up with my story somewhat but I could tell although he was pleased to see me (I got numerous hugs!) it was as difficult for him as it was for me. I was on the unit for a good 3mths when I was there, he went through the ups and the downs with me and eventually after a horrific open lung biopsy the diagnosis of lung disease with a bleak outlook (although the exact diagnosis was not right I do have another form of ILD and it also has an equally poor outlook). Alot of staff in a situation like that would distance themselves, its something I've found with adult medicine, staff are very reluctant to get emotionally involved (maybe something to do with the fact most of the time the nurses for one run around like headless chickens or at least make themselves look busy…). Children's medicine is nothing like that or at least the staff on that unit weren't. I don't know if the way children are looked after on that unit is unique to that place or it is just the way things are in children's medicine. That HDU because it is a sister hospital to the main hospital, Pendlebury Children's hospital, makes it often quiet, especially in the summertime. Today there were 2 patients, 1 very unwell; the member of staff I went to see was pretty much tied up with that patient so I didn't stay long. But going back to the beginning was, I don't know how to describe it, I had mixed feelings. In a way it was great to look back and see what I've been through and lived through since then, in another way it was sad to think not much had changed and I have infact deteriorated further. But I'm glad I did go back and it was good to see that member of staff and the unit and I will probably go back again.
Well as you have probably worked out from the gap, I did go into hospital for IVs. Things got a little complicated with to begin with... I have not made my wishes on end of life decisions clear. It’s something I've discussed verbally with the hospice staff but nothing official. The night before I was admitted I scribbled some basic info about me on note paper and decided I'd make my wishes clear. I didn't find a time to talk to my parents about what I'd written and it all came as a bit of a shock I think. I got told I needed a change of attitude and I shouldn't be so selfish. Selfish or not those were my wishes and the medical team stuck by them. It made things easier for me in some ways. I knew what was and more importantly what wasn't going to happen... Anyway I got my IVs, it took 3 five day courses of 2 strong IVs to control things a little, MRSA was isolated in my sputum. But I am still not infection free I don't think. Since my allergy (if you can call it that) was 'discovered' to Vancomycin last year that drug has now obviously become unusable. Instead I was tried with a different drug called Tigecycline, it is a good drug for MRSA and other bacteria but the side affects aren't pleasant and due to vomiting I've lost another stone in weight.
Due to infection Jamie hasn't been able to come near and I'm sorry to say it has lead to us having to end our relationship. The strain for me was too much. I wanted him there when I needed him most and he couldn't be, I know for 1 second thats not his fault its just the way things are and the more I thought about it the way things always will be. We agreed to still talk/text and I hope he will continue this blog with me. I'm looking forward to hearing how his training for Australia transplant games 09 has been going...
Jamie made transplant look easy, his is one of the success stories that I'm glad to have been apart of but recently the issue of transplant for me seems to have got more complicated (if that’s possible). Duke is still waiting on scans and x-rays that have been posted to them. The teams have now shown alot more interest and both London and my local transplant centre appear to want to be in the picture. I don't have a problem with them taking interest, I need to keep my options open and things would be so much easier if I could get on the list in the UK but they are proposing dangerous and invasive tests which I'm not sure I want to be part of. To cut along story short things with the UK teams have got very 'messy' and its been left to my local consultant to untangle this web of mess and see who is really in it to help me get on a transplant list and who is out to make life harder. I wouldn't want to be in his position right now.
If there's one thing I've learnt recently from various conversations and recent happenings its that transplant is no cure, it is no fix and it is certainly not the answer to everyone's problems. It is a gamble and a big one at that. A swap of one set of problems for another and what I and the teams have to work out is are my problems worth swapping? Sure the reward of things working out is the dream but what if I were one of the unlucky one's it just didn't work out for? I'll leave you with some transplant wisdom anyway...
