Friday, 22 June 2012

Disaster magnet!

Time to finish that post I started! Sorry I've left it so long I'm sure you all understand though ; )

I left off last time having just met the team who are caring for me and arrangements were being made for me to get my Hickman line so they could start my TPN. As mentioned before, they agreed to arrange for me to have sedation for my line insertion because local anaesthetic doesn't work for me (because of my EDS). They initially thought I would have to wait a while and they had planned to place a temporary line while I waited. As per usual the plan changed again and they managed to get me a space on a list at another hospital in Leeds, (Leeds general infirmary) meaning I didn't need the temporary line after all! My NJ tube had blocked the night before so it was perfect timing considering I have no other route for meds etc.

Wednesday morning came round and everything went as planned. The patient transport arrived on time to take me over there and they were expecting me when I got there, which is always good! When I got into the prep room before the procedure the clinician came in to sort out the final bits of paperwork before taking me in. As he was explaining the procedure it dawned on me that he was planning to use a local anaesthetic for the procedure.....oh boy! I soon spoke up and asked if he knew about my problems with locals...I was met by a blank expression....oh oh! It turns out that they had requested for me to have sedation not realising that this wasn't appropriate considering that it just makes you doesn't mean that you won't feel pain in the event of the local not working. The clinician totally blew his lid and told me to tell the bleeping bleeper who organised it that he was a bleeping bleep and if they expected me to cope with it under sedation then they should come and have it done like that themselves and see how it feels lol. He then explained that they didn't have an anaesthetist available to give me a general anaesthetic and he wouldnt do it without one....oh dear lord what a nightmare! I explained the whole situation surrounding my need for the line in the first place and he got my notes out to have a look....hmmm it says in your notes that you have a complex medical history but they have only supplied me with 5 pages of notes!!! It wasn't looking good! Luckily, the theatre nurse who I had been chatting to went in search of an anaesthetist for me....and returned 10 minutes later with good news! She had managed to collar an anaesthetist between cases and practically shoved her into the room lol. So, after all of that I finally did get my line, under a general anaesthetic and I can safely say I didn't feel a thing lol. Someone must have been watching over me x

So, I'm all set up and the TPN is running at long last! Yay....fooooooooood!

However the setbacks keep on coming and it hasn't been as plain sailing as expected. I was looking forward to no more needles, no more face tubes and most of all, some reliable nutrition. Unfortunately, they placed a single lumen tube, meaning that they could not administer any medication via the Hickman and I still have to face the daily blood draws but hey, a line is a line and if I get some nutrition that's the main thing!

I was booked in for a new NJ tube this morning as a means for administering my meds but this is me got cancelled! I have no idea when they will be doing it now so I'll just make the most of having my face back for a while!

On the positive side, I aced my first class in TPN training and I had a wonderful surprise visit from a young girl named Hannah and her mum Carol, who I had met through this blog a while ago! We have tried to get together many times before but one of us always fell ill before we actually got together. It was great to finally meet them and put faces to names! I must also say a huge Thankyou for the beautiful pink roses they brought me....all the nurses are jealous!

I didn't expect the road to be easy but despite all the drama I'm happy in my own little way, I know I'll get stronger and I know that I'm safe....that's what counts to me. You could throw anything at me right now but I'd still smile regardless xxxx

Monday, 18 June 2012

Hospital progress update

Well, what a week it has been!

As usual nothing is straight forward and plans have been changed again. Following on from my last rant, I finally made it to hospital on Friday after my mum staged a sit in at my GPs office lol.

We had spoken to my GP on Wednesday and asked him to contact the hospital following the advice of my consultants secretary. He was supposed to ring them and let them know what the situation was with my feed rates etc so they could prioritise my admission. Unfortunately this particular GP still lives in the dark ages, before telephones and emails and decided to post a letter marked URGENT instead....yes really!

By this time I was really at the end of my limit, I hadn't had any feed at all for 10 days and only 240ml of water per day through my NJ tube. I might be used to starvation but everyone has a limit and I reached mine quite some time ago. I really couldnt cope with it anymore and literally felt like I was just going to fade away. So as I said, my mum marched down to the surgery on friday and refused to leave until she had spoken to my own GP, who is much more efficient and understanding. She knows me well enough to know that when I say I need help...I mean it. Thankfully she made some phone calls and I was on my way in by mid afternoon the same day.

Unfortunately, with the weekend almost upon us there were no doctors from my team I get the usual weekend treatment from junior doctors who don't fully understand my situation. By Saturday evening I had been in for 24 hrs and they hadn't given me any treatment other than my usual medication....and they even got that wrong 3 times running. So I asked the nurse why I wasn't getting fluids even though I'm getting so little from my NJ. She said that the doctor had checked my bloods and they were ok so I didn't need any. My reply to this? I had just been for my REGULAR Hartmans soloution at the clinic the day before I came in. I might as well have been talking to the wall because they still did nothing about it. Plus they thought my tube was an NG? I'm sorry but even I know that when you get a new patient on the ward.... you read the notes! At least that's how I rolled when I was nursing!!!

Needless to say, when the Gastro team returned this morning they went crackers and I was hooked up to an IV within minutes lol. They were very good and I've now met several members of the PN (parental nutrition) team. I had been worrying about having the line put in for weeks because local anaesthetic doesn't work well for me. Last time I had it...for my jej tube stitches, it was more like a trip to the tattooist for some form of extreme body piercing than a painless clinical procedure. At first he said that there was no way round it because they needed to get a line in straight away and I would just have to try and tolerate it as best I I agreed to give it a go....cringe! THANKFULLY, he came back an hour later to tell me that he had spoken to the clinician who would be doing the procedure and he had refused to do it because it would be too painful.....phew! So the new plan is to put a temporary PICC (peripheral intravenous central catheter) line in so they can start the TPN while I wait for a space on the sedation list for the Hickman line.

I'm hoping that they will place the PICC line tomorrow because I'm STILL not getting any calories other than my 30ml of calogen per day. It's so draining I really can't describe how it just takes over your whole body and there's no way of getting rid of that feeling until I get some nutrients back on board. I have been getting IV pabrinex (vitamins) which usually makes me feel bright and alert again but this time I don't feel so much benefit from it.

I have so much more to say but I've been typing for too long now and I'm shattered so I'll try and pick up where I left off tomorrow, I need some sleep! xxx

Wednesday, 13 June 2012



This is going to be one big rant, I'm a calm person really I promise ; )

Lots of you already know that I was due to get my Hickman line on Tuesday, so by rights I should be getting some food by now. But remember...this is me, queen of the cock-ups, disaster magnet extrodinaire... or is it just that I'm so laid back that people think "its ok she won't mind"? 
Which ever it is... I DO mind!

As mentioned in my earlier post, I was due to be admitted on Sunday ready to get a hickman line on Tuesday. Unfortunately there wasn't a bed available on Sunday. 
Not to worry, just a quick change of plan....go down to my GPs office to get the MRSA screening done and all will be ready for Tuesday. 
After all, I'm "DEFINATELY DEFINATELY" on the list! 

So I skip my regular IV day which was much needed, to head down to the GP to get the screening done, expecting that it would be ok because I would be getting my fluids on Tuesday after the procedure.

I didn't know where or when to go but they said they would phone...
several phone calls and a lot of waiting later, don't worry its all in hand and the unit will contact you shortly with a time.
I know whats coming...
Actually, even I didn't expect that!..
Nothing, not a peep or a whisper... 
So I presume its off then! 

But what's the plan now then?

Today someone will ring and tell me what the new arrangements are...
Several more phone calls later...
I finally get to speak to one of the team....hmmm there are no beds and you have missed the list for this week....the next slot is on Tuesday! 
What? I don't need a bed, stick me in the cupboard for all I care just give me some food!!!!!

The upshot is, they are waiting for a bed, as soon as they get one I'm there....
But I still have to starve for 7 more days because I missed my slot! 
Hey, no rush guys...
I'll do you a deal!....
You starve for the next 7 days with me and see how much you mind!

If you're a really good patient I might throw you a litre of fluid to keep you going!

Apart from that I'm chipper!

Saturday, 9 June 2012

A New Chapter

Where to start?

Well it's been a while since I sat and spent any time writing and as usual lots has been going on. Last time I wrote I had just started taking Pregabalin for pain and Refaximine for bacterial overgrowth which had been recommended by the team at Manchester. I'm now on the full dose of Pregabalin and have finished the course of Refaximine yet I'm still having big issues with pain and feeding.

The IV therapy has been keeping me afloat for the last few weeks which has been helping me manage while I wait for a better long term solution. I have rubbish veins though so it has meant repeated jabs into veins that are already scarred from overuse. They are really good at the unit though and they have been keeping a close eye on me. I wasn't so good when I went last week and they had a Dr up quick sharp to come and see me. To put it politely, I hadn't "been" for 6 weeks straight. I had spoken to my gp about it but their opinion was that I wasn't getting enough feed to cause a build up so not to worry. I don't know why they don't listen to me but hey who am I to know my own body? The Dr I saw on the unit was much more sensible and prescribed me some phosphate enemas to take home. It was really hot that week and I had not been tolerating my feed so he suggested that I switch to water through my pump instead.....if you have read my earlier posts that statement will make  you smile! I only have bags of feed at home and no hydration bags so I followed a good friends recommendation and cheated. I emptied a bag of feed and sterilised it with milton then filled it with cool boiled water from the kettle...probably not in the handbook but like I said, it's been an issue for a while lol.

I have been emailing back and fourth with my consultant over various matters but mainly I wanted to know what was happening about my referral to Newcastle. I don't know quite what the situation was but the plan changed and I'm now under another specialist (yes another new one) in Leeds. I was expecting a long wait to hear back from them though because it usually takes forever for an initial consultation. I was pleasantly surprised when the phone rang on Wednesday and it was my new consultant. She was very nice and I didn't have to explain too much which is always good. She was initially thinking of admitting me for assessment but after discussing the feed rates she decided that it was no good waiting for me to loose any more weight than I already have and that she would try and get me in for a Hickman line (a tube that goes into the artery near the heart) straight away so that I can start TPN straight away.

She called me late on Friday evening to say that I would be going in on Sunday and I would be getting the line put in on Tuesday. She then told me I should expect to be in for about 4 weeks for them to balance the feed and teach me how to look after everything and be safe! While it is a huge relief to know that it's all going ahead and I won't be waiting, I'm also pretty scared. Not so much of living with it, because I'm sure ill get used to that like I did with the jej feeding but having a tube in my chest? Squeemish! I probably didn't do myself any favours but I have nursing in my blood and I like to know everything so I watched Dr Hickman's video of how he places them.....yeah, that wasn't such a good idea!  I would have found it fascinating a couple of years ago, but when you know that's what's gonna happen to you...hmmm. Maybe that's why I'm sat here at 3:30 am talking to you guys!

Anyway all joking aside, I'm positive about the whole thing and I'm sure it will give me some quality of life back that I have been missing for so long so onwards and upwards and I'll catch you all soon xxx