Wednesday, 26 February 2014

…I might as well write a book…Part 4

… Finally I arrived in Leeds, I felt like I could stop stressing out over the whole thing and just ride the course and let them take care of me without all the drama.

My ambitions of going home some time soon were quashed when they told me the list for new lines was two weeks long and I would have to stay with them while I waited. It wasn't ideal but there wasn't much choice in the matter. This meant I would need a temporary line once the infection was clear, just as a bridge until I could get a slot on the list for my hickman.

Several days later my bloods were clear and it was full steam ahead with placing a midline so I could get some food again! I never gave the procedure a second thought until they told me they placed them with a local anaesthetic…. great! This time I didn't need to explain, I didn't think it would be too painful so I just asked them to go ahead without it. My PN nurse who was going to be placing it was a little apprehensive about doing it without, but what choice was there really? So we just got on with it, hubby was next to me but he kind of sat back, shut his eyes and pretended he wasn't there lol. It wasn't nice but it didn't take too long with the help of the ultrasound and all three of us breathed a sigh of relief once it was done!

They started my TPN that evening. Whenever you have a gap in feeding (more than 3 days) you have to go through a kind of weening process. You start off slowly over 24hrs and then gradually build back up to a full feed over a few days. To begin with, it was all going fine but as they started increasing the drip rate I noticed my arm was starting to ache. We all thought that it was just sore because it was a smaller vein and the feed rate was putting extra pressure on it.

Over the next few days, it got more and more painful but there was no swelling or redness to see so they carried on using it. Not long after that, I noticed that I couldn't lift my arm properly and I was getting pins and needles. I told the nurse but she had a quick look and said it looked fine. Later that evening I couldn't ignore it any longer, it was so painful I couldn't bear it any longer and told the nurse she was going to have to remove it because something simply wasn't right!

The next morning the ward round dr took a look and requested an ultrasound to check for a DVT (deep vein thrombosis /  blood clot). They checked my whole arm and found a large clot running through two veins right from my armpit to my elbow. The radiographer said it was the biggest she had seen… now, I'm no radiographer, but even I could pick it all out on the monitor!

Obviously this meant I would have to start taking warfarin and blood thinning injections for the next 6 months to try and dissolve it so they started treatment that evening. I didn't give it a second thought at the time but the following day… my theatre slot comes up for my new hickman.

I was taken down to the unit expecting the surgeon to know everything about my anaesthetic history etc but I found myself once again having to explain why locals and sedation were no good. I told them it was because of the EDS and he started a long debate with the anaesthetist about it. The surgeon was a little arrogant and was kind of teasing him into explaining but he had to admit that he had never come across it before. I felt a little like they were taking the piss to be honest which didn't fill me full of confidence so a sat up and told him exactly why my body won't uptake the local and if he wanted to know more to look at the EDNF website! Realising that in this instance they didn't actually know what they were talking about, they apologised and agreed to giving me the GA that had been requested.

People wonder why we get so frustrated. Would you like to have to beg for the right care? Would you like to have to carry a medical encyclopedia around in your head so that dr's don't just see you as being "difficult"? Would you like people to think you are a drug seeker? I'm guessing NOT! Well, we have to face this, day in day out year after year, and I can tell you…. it just gets harder the longer it goes on!

ok, rant over…

Once I had the line placed I knew I would be able to go home so of course all I wanted was to get out of there asap! I had a lot of swelling but it was expected because of the warfarin so I didn't think too much of it and got myself off home as soon as the papers were signed!

…………… and then……….

I went straight to bed, did not pass GO and did not collect the £200… Honestly, I was good this time!

I've learnt from past experience that the first few days at home are tough, you feel ok in hospital because you are laying in bed RESTING all the time but as soon as you get home it's like….ooh that washing needs doing, and, that doesn't live there, and, mummy I need a drink! But I didn't do any of that this time I swear! Mainly because I couldn't move my arms but hey, that's beside the point!

I slept for most of the following day so I didn't notice that my line had started bleeding. When I finally woke up I looked down to find a big red bulge under the dressing. I wasn't sure what to do so I rang the PN team in Leeds who said it was probably just bleeding because of the warfarin and not to worry, just change the dressing and keep an eye on it. I put the phone down and got everything out to change it… and then  realised that I couldn't actually manage to do it by myself with one duff arm and a swollen chest so I booked a slot with the nurse at my local practice.

Well, she took one look and started flapping. I got that sudden sinking feeling… here we go again! I assured her I had spoken to the hospital and they had told me to change the stat lock and dressing and I could talk her through it. She was far from happy about it but agreed to give it a go. However, as soon as she peeled the dressing away we could both see that it was actually still bleeding. If she wasn't happy before… she certainly wasn't now! So she promptly left the room to speak to the Dr and came back 5 minutes later with a thermometer and the "look". I crossed my fingers and toes as she took my temp and insisted, I was fine,  I didn't feel unwell, and would be ok if she just put some gauze on the dressing…. beep…beep…beep….38.2…..arrrhhh Bkjbgegilwa!

….. part 5 coming soon….

Friday, 14 February 2014

…and still we're catching up!.. part 3

…. I know, it's been a long story, but it's not finished yet and I have so much more to tell you already!

So, to re-cap, I had line sepsis… They removed my line in the most painful manner known to man… and then I was told they needn't have removed it at all.

You would think that would be enough for one person in one admission but the punches kept on rolling and I simply had to take charge of the situation before it got any further out of hand.

I spoke to the consultant who had been assigned to me and insisted they speak to Leeds before making any further decisions and pleaded with them to try and get me transferred. He agreed to make every effort to contact them and get advice so I presumed he would be ringing them asap. He then went on to say that if bed availability was going to be a problem they would have to start feeding me some how.

Later that day the registrar came to tell me they were planning on placing a femoral line and they were trying to make arrangements to have it done in the early evening. I was still on antibiotics and had simply presumed they weren't going to try anything until the infection had gone. Alarm bells started ringing instantly so I asked if they had got the ok from Leeds to do this. He explained that they hadn't heard from Leeds and nutrition was the most important thing. I was puzzled as to why they were finding it so hard to get in touch with anyone as there is always someone at the end of the phone to pass on urgent information. His reply was, that they had emailed my consultant… very 21st century for the NHS but what's wrong with a two minute phone call? It probably took longer to compose the message!

Knowing that my GI wouldn't actually get the email until the end of her working day I decided to ring the PN team myself and get advice. 5 minutes later I had made more progress than any of the Dr's looking after me. I spoke to my PN nurse and he explained very clearly that I must NOT let them place another line, IV fluids through a peripheral cannula were perfectly adequate and placing a new central line could cause recurrent sepsis.

Not wishing to EVER feel like that again I thought it best to discuss the problem with the team looking after me. One of the younger doctors came to sign through consent forms for the new line so I told him I needed to speak to the registrar before signing anything because I was getting contradictory advise from my team. He was very young and obviously lacking in experience so I laid everything out as clearly as possible. I was trying to be gentle and not rock the boat too much… and then he muttered those fateful words… "I'll tell them you're refusing then".

OH OOOOOOH! I rarely loose my temper, I hate confrontation with a passion and avoid it if ever I can. However, that one little sentence was like a red rag to a bull. I'm incredibly sensitive about the subject of "refusing treatment" and felt that the connotation of those words were unjust! I was NOT refusing treatment, I was following advice from the experts…. who I know and trust with my life!
It wasn't pretty, I'm not proud of myself, I just couldn't take any more! He was not expecting such an onslaught of verbal diarrhoea and left the room vowing to never use the term "refusing" again!

Obviously, it all ended with half a dozen people coming to try and resolve the situation, so I simply told it how it was. Leeds want to wait for negative cultures before any new lines are placed so that's how it's going down! I spent 2 years under their care at the beginning, in which time they watched me almost starve to death, but now I have a diagnosis 4 days is too long??? Am I the only one who sees the irony in that?

…. strangely enough, I was transferred the following day… ; )

Part 4…. yes part 4, coming soon!