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Update – July 2014
This is a post about my health (be warned, it’s a long one, I’ve tried to trim it down as much as I can) (it’s also a bit graphic, so perhaps don’t read this before/while eating). For better explanations of some of the terms head over to the Medical Terms page (click here).
Recently I’ve had a run of bad luck, one thing after the next after the next. Intertwined with these have been good things, but they have almost all been overshadowed by the bad. I’m not complaining, because that’s not what I’m about. I just want to give you, my wonderful friends and supporters, an update on my health.
I have been battling a number of infections in my PEG (tummy tube) and catheter (urine tube) sites which have been making me rather poorly. Despite numerous courses of IV (into the vein) antibiotics they only seem to suppress the infection for a few days and then the infections come back, whilst still on the antibiotics. I have two infections in each site which are caused by bacteria that have translocated from my bowel; the bowel is full of bacteria but mine is full of bad bacteria which breed easily due to the lack of motility (movement) in my bowel, providing the perfect breeding ground. This is called Small Intestine Bacterial Overgrowth (SIBO for short). SIBO can be treated with cycles of antibiotics to reduce the amount of bacteria in the gut and probiotics to replace the good bacteria, which can help reduce the frequency of infections resulting from translocation of bacteria. Translocation means these bacteria have got into the bloodstream, are pumped round the body and then they have settled in the place of infection – in my case PEG and catheter sites, but fortunately not my Hickman line like so many of my friends have experienced. It doesn’t have anything to do with cleanliness, it cannot be prevented as the infections come from within the body, so we just have to treat the resulting infections as best we can and try and reduce the amount of bacteria in the gut in the first place. I had been running a temperature as a result of the infections for months now and have had so many antibiotics that we were desperate to do something about these infections.
I had a planned admission on the 7th July to place a new Hickman line (a line in my chest which goes into a vein in my neck and down into my heart, also called a central line). My Hickman line is my “life line” as my TPN (IV nutrition, consisting of glucose, electrolytes, amino acids, minerals, fats and trace elements in fluid) is slowly pumped in over the night and/or day depending on how long your body can cope without it. I also have most of my medication through this line. I am on TPN and IV medication as I cannot absorb through my gut and I cannot eat as my body can’t digest and pump food through my gut. TPN is keeping me alive, without it I would starve to death. TPN must be set up and disconnected and IV medication administered under aseptic (sterile) conditions, which takes about 20-30 minutes each time. My mum has had to be specially trained to do this. I have been on TPN for over 3 years now. As I need IV medication and IV antibiotics so frequently during the day I couldn’t manage with my single lumen (one tube) line anymore. So I was due to go in on the 7th and have that line taken out and a new, double lumen (2 separate tubes in one) Hickman line put in.
Unfortunately, on Saturday 5th July my bowel obstructed. Instead of there being a physical blockage, this is a “pseudo-obstruction”, where no physical obstruction is present but the bowel shuts down and acts as if there is one. This is a part of my condition Chronic Intestinal Pseudo Obstruction (CIPs). My bowel had shut down, I had no output through my Ileostomy (stoma bag) and began vomiting faeces – if it doesn’t come out of my stoma it has to go somewhere and that happens to be up. I have my PEG (tummy tube) on drainage 24/7 anyway as my bowel frequently backs up and this stops me from vomiting, but unfortunately in an acute pseudo-obstruction it cannot drain quick enough so what normally comes out of my stoma I end up vomiting. It’s not nice at all. Normally these episodes resolve themselves in a day or so, but this one didn’t and continued to get worse. As I have swallowing problems due to weak muscles in my throat, I often end up choking on the vomit which comes up and gets stuck, blocking my windpipe and stopping me from breathing properly. It is horrendous and scary (we are currently sorting out having suction for these episodes so I can suction it out of my throat without choking). So on Sunday night, instead of driving to the hotel in London ready to go to the hospital on Monday morning, we drove to The Royal London Hospital A&E (where my nutrition/TPN and gastro teams are) and I was admitted and given Morphine for the pain and an extra IV Cyclizine (I have IV antisickness medication at home which my mum gives me on a daily basis) to stop me vomiting. I was moved up to the ward and thankfully the pseudo-obstruction started to resolve itself and my bowel slowly started to work again and so on Monday 7th July, as planned, I had my single lumen Hickman line changed to a double lumen line. This went fairly well, I have them done awake, so there was nothing really to recover from. Also planned for this admission was to remove my PEG and for me to have an NG (nose-to-tummy) tube to drain my stomach while I didn’t have the PEG. They would put me on another course of antibiotics, which they started after I had my new line put in, and then on the Wednesday I would be taught to put in my own NG tube and my PEG would be removed on Thursday. This would mean we would get rid of the infection in the PEG site, let it heal, I would have the Urostomy (stoma bag for urine) done in the August and the infection in the catheter site cleared up and then a new PEG would be placed. Unfortunately my body rejected the NG tube and I vomited for over 3 hours straight, vomited the tube up and started vomiting blood. I then began passing blood through my Ileostomy, which carried on for 12 hours. The vomiting stopped not long after I vomited the tube, fortunately, but either the tube itself or the constant vomiting had caused a tear in my oesophagus or in my stomach which took a long time to stop bleeding and heal. My heamoglobin (red blood cell) count dropped, but stabilised once the bleeding stopped and they decided not to go ahead with a blood transfusion. Needless to say the removal of my PEG was cancelled.
On the Thursday (10th), unexpectedly, an endocrinologist (a hormone doctor), though not my normal one who deals with my Osteoporosis, came round and told us that I have an Overactive Thyroid (Hyperthyroidism). This is what is causing my tremors, and they think my high resting heart rate, trouble sleeping, excessive sweating, heat intolerance, shortness of breath, more severe muscle weakness and excessive thirst. It needs to be treated but the drug they use to treat it (Carbimazole) only comes in oral form (which we crush, mix in water and put down my PEG). We have doubts that I will absorb it, but they will regularly test my thyroxine/TSH (thyroid hormone) levels and we will see. This was a huge shock to us, though it made sense given my symptoms.
Mum left me that night, for the first time this admission, and, in my sleep, I fell out of bed/got out of bed and fell and I broke my hip – I fractured the femoral neck, in medical terms. Mum thinks, as my catheter kept blocking, that I must have needed to go to the toilet and as I did get out of bed and go to the toilet normally for 14 years, I subconsciously tried to get out of bed and go to the bathroom. But of course I can’t stand without help, and if I stand up for more than a second or two I pass out, so I just fell over landing with all my body weight on my right hip. I only woke up when I hit the floor and my hip snapped and I was in agony. I was in a pool of urine as I’d pulled my catheter end out of the connection to the drainage bag. I was confused, shocked, and terrified. I didn’t understand what had happened but I knew my leg was broken. I just knew. The pain was excruciating – I’ve had a lot of severe pain in my lifetime and I live in quite severe pain all the time, but this was something else. At first I tried to get up to get back into bed so I could buzz the nurses – I couldn’t get up off the floor even at my strongest since being ill, so how I was going to do it on one leg with the other one broken I will never know. It shows how disorientated and confused I was. Next I pulled the pump charger leads out of the back of my pumps and tried to shuffle to the door to get the nurses attention, taking the drip stand with me, but I couldn’t move. I was in agony. So I kept shouting nurse, and after 20 minutes they heard me and found me on the floor. I was sobbing, shocked and confused. They got me back into bed and I phoned mum, who came straight up. Even mum could see it was broken, my leg was turned out at 90 degrees and I couldn’t move. 5 hours I waited for a doctor – there’s only one doctor for the whole hospital at night – and then the night nurse was called and I was taken down for an xray about an hour later. The xray confirmed I had broken my hip. I was in so much pain and where they laid me in bed, I stayed, covered in urine, for 57 hours until I was operated on. The operation took place on Sunday 13th July and I had a Dynamic Hip Screw – I have a long screw through the bones, a plate and some smaller screws holding the plate in. Immediately my pain was more than halved. I didn’t end up needing the HDU bed they wanted me to have so I spend an hour in recovery and then went back to the ward! They were very impressed. I could now move, make myself comfortable, and needed much less morphine. I have a 6 inch scar down my hip/thigh. The type of injury I had is most often seen in geriatrics and people only tend to get 60-70% function back. I was on oxygen for a few days afterwards as it took my body a little while to recover from the anaesthetic. I started working on regaining some function in my leg, and got out of bed and sat in my wheelchair for the first time since breaking my hip on the Wednesday, and I was allowed home on the Thursday – though we weren’t discharged till 9pm due to waiting for my medications from pharmacy.
I was enjoying being at home, back in my own bed and back to normality. I am working really hard on the movement in my leg and could see an improvement in my hip and leg every day. I got to the point I could move my leg and lift it but bending was a real problem. It was the only thing that wasn’t improving. I carried on working really hard and probably had more strength to lift my leg up than I did before I broke it! I was still on IV antibiotics and had started my thyroid medicine and was also now prescribed IV Paracetamol which had brought my temperature down to normal. I was slowly getting back into a routine when we noticed that the cuff of my Hickman line (the line has a little bit on it called a cuff which sits in the tunnel (where the line is buried under the skin of my chest) and irritates the surrounding tissue so it heals to it, holding the line in place) was slowly working its way out. I didn’t realise it was the cuff at first but we phoned my nutrition team at The Royal London and they said it was the cuff when I described it. They stopped me using it and told me to come to A&E there to be admitted for IV fluids until they could book me in to interventional radiology to have a new line placed. This was Wednesday 23rd July.
Fortunately, they managed to get me a slot Thursday morning so I went down to IR and bumped into a friend in there which was nice, we passed the time chatting whilst I waited for my line and she waited for her CT scan. Then I signed the consent form and in I went. They decided to put the new line in first and then take the old one out as they were going to use a different site and make a new tunnel. When they were scanning my neck to check for sites they couldn’t see my old line in the vein, but they thought nothing of it. They started making the cut to get to the vein to make a new site and put the line in, but they still couldn’t find the old one. They realised that my old Hickman line had snapped, probably when I fell and broke my hip, which is why it was falling out as there was nothing holding it into the vein. They started to cut and look down and follow the vein thinking the broken bit of line had dropped down a bit, but it was nowhere to be seen. They started to panic. After a lot of searching they found the “fugitive” bit of line (as I call it) had gone through my heart and was now in my pulmonary vein. It was about 3 inches long so how it didn’t cause any damage we don’t know. I’m very unlucky that it happened but very lucky it didn’t cause any problems or death. They had to get senior radiologists in so I ended up with 5 radiologists (including 2 senior, very experienced radiologists) all trying to decide what to do and getting a little bit anxious. The new line insertion was stopped and a cut made in my groin to get access to my femoral artery/vein, into which they threaded a guide wire. They threaded the guide wire up the femoral artery/vein and into my heart, then to get it into the pulmonary vein. Unfortunately, despite the most experienced radiologist doing it, for a long time they couldn’t get the guide wire through my heart, it kept coiling. The guide wire was irritating my heart so it was beating irregularly and I felt sick and like my heart was going to beat out of my chest. Finally, after a lot of hard work on their part, they got it to the pulmonary vein, threaded the clasping tool up on the guide wire, and got hold of the fugitive piece of line, pulling it down through my heart into the femoral artery/vein and out through the cut in my groin. Then they could get on with putting my new line in. They used another site on my right hand side. It’s a shame they couldn’t use the same site and tunnel as last time as you only have so many sites to place lines in the veins, very rarely can you go in the same spot twice, but this is only my second site so I have many left yet. It probably only took 20 minutes to half an hour to make the tunnel, thread the line through it and put the line into the vein and push it down until the tip was just inside my heart. They then cleaned and stitched me up, dressed the wounds and then I slid myself back into bed from the table. I had to lay flat for 2 hours due to the wound in my groin but aside from that I was fine, no pain or problems except for a little bit of tightness in my neck. Local anaesthetics don’t work very well due to EDS so the whole thing was a bit painful and I had more Lidocaine (anaesthetic) than they would have liked, but it was done, and after half an hour in recovery I was taken up to the ward.
We started using my line almost immediately but they wouldn’t let me home due to my high heart rate (130 resting, went up to 150-160 during the procedure) and so they wanted to rule out different causes. I kept explaining that my tachycardia (high heart rate) was most likely a combination of my Autonomic Neuropathy, PoTS and hyperthyroidism as well as the stress of the procedure on my heart (where the guide wire was irritating my heart) but they didn’t really take this on board. I had an ECG – I was in sinus tachycardia as usual – and an xray, which came back ok. They kept me in Thursday night and said I could go Friday morning. On Friday morning, with my heart rate still at 125-130, they wanted to rule out another possible cause. I had a nuclear (V/Q) scan to check for a blood clot on my lungs. First I had to breathe in radioactive gas which would coat my lungs, I was laid in the scanner and they took a few different scans, then they injected me with radioactive contrast and repeated the scans. It came back with a very low probability of having a Pulmonary Embolism (blood clot on the lung). They came to the same conclusion as me: it was due to my pre-existing conditions. I did have a lovely day Friday though as an American friend of mine came to visit, and we had a wonderful time. I was on such a high after that so I didn’t really think too much of the nuclear scan. And we got home Friday evening.
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| The highlight of this month – my American friend Janet and I |
We’re trying to find out whether my Urostomy operation is still going ahead; they cancelled it when they found out I had broken my hip but my orthopaedic surgeon gave the go ahead for the operation to take place on the 12th August. I’m hoping it will go ahead as that will mean we can get rid of the catheter and the infection in the catheter site. If it goes ahead we’ve got the whole autumn and winter to get me well and stable and to improve my quality of life ready for spring and summer next year. We’d hoped this summer I’d have been well enough to enjoy it but it wasn’t to be. I’m pouring all my effort into getting myself well enough for next year. We’re also doing very well with the fundraising for my off-roading wheelchair, have a look at the dedicated page on here and click here to go to the GoFundMe page. It will make a huge difference to my quality of life. Thanks to everyone who has donated and shared.
I am also pleased to announce that I am now as Ambassador for the wonderful charity Dreams Come True. They grant wishes to seriously and terminally ill children and young people, including me. Be it meeting a favourite celebrity, seeing a show, or going on holiday, if they can they will fulfil every wish. I am honoured to be a part of such an incredible charity. Head on over to their website to see more about their work – click here.
I am also an Ambassador for Together for Short Lives. Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. They support families, professionals and services, including children’s hospices. Their work helps to ensure that children can get the best possible care, wherever and whenever they need it. They are the charity I spoke for in Parliament and through whom I’ve had many writing and speaking opportunities. They are the charity that helped organise my meeting with Dr Dan Poulter MP, which we will soon arrange as we had to cancel the original date. Click here to go to the Together for Short Lives website
So this is me at the moment. We are hoping that was the last disaster and hospital admission for a while (aside from the Urostomy). Thank you all for your support, for reading my blogs and taking an interest in my life. I hope to get back to regularly updating the blog and Lucy’s Light and of course Molly’s blog. There are lots of things on the horizon at the moment and so I’m trying to get caught up with everything now I’m home again and all I can say is watch this space.
Lucy
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I just read that open mouthed. You have been through so much, I can't imagine. You have such a great fighting spirit. I am glad you have Molly to take care of you. Hoping the next month is nice and calm and easy for you and the op you want can go ahead. Thinking of you lots. You are such a star.
Lucy – I am just in awe of your smiles and bravery. Seriously how much does one teenager have to cope with and you are still smiling. I think that you are such an inspiration and the support of your family and friends show how special you are. Please continue when you can to update us of your progress and we hope that you can get your wheelchair for you and Molly to get out with your camera as soon as you feel ready. Make sure you rest and take care of yourself when you need to – what more can I say you are amazing but ~I know that you are living this day in day out and I bet you get really fed up but so many people are here for you x