I’m back again but this time I’m a little earlier than usual. usually, I upload a health update every 3-4 months but I’ve had so many appointments recently that I thought I’d share this months update with you early!
Can you believe we’re half way through the year already? I feel like so many different appointments and procedures have happened this year already yet it feels like time has flown by. that being said, this is why I enjoy writing these types of blogposts, so by the end of the year I can look back at my journey I’ve been through and remember all my appointments in detail (as I’m like dory from nemo, memory span of 2 seconds).
So as I said, I’m back today with a VERY long update for you all. I just wanted to get every little detail in so that you can understand me and my journey a little better! I feel like this blogpost for once has its fair share of positive moments which makes me happy as usually these updates are quite gloomy.
Anyways before I ramble on any longer, let’s get into the update;
Queens Hospital Neurology – 29th March
For me, this was one of the most important hospital appointments since falling ill. For nearly 2 years now, I’ve been suffering with a continuous migraine which has been taking over the life drastically. This isn’t just your odd migraine which ruins your day, I suffer with the same migraine day in, day out without a break. Some days I can cope with the pain amazingly and continue with my day but always have it niggling in the background, whereas other days I’m left bed bound, unable to open my left eye (as it’s swollen shut) and have to be in a dark room alone. 4/5 days out of 7, I’m bed bound with this migraine and despite having been diagnosed with multiple illnesses and having tried EVERY migraine medication possible, we are still stuck on knowing what’s causing this migraine and why it’s reluctant to work alongside medications.
So my neurologist referred me to the top migraine hospital in the UK with two of the top neurologists in the UK, Queens Hospital in London to meet with a team of neurologists that could possibly help. Thankfully, only a few weeks later I got an appointment!
It was one hell of a journey to and from Queens Hospital, overall it was a 9 hour journey, in which I’ve never felt so ill. Despite the awful journey, thankfully it was well worth the travel. For the first time in 5 and a half years of being ill, I was given hope of curing my chronic migraine! in 6-8 weeks time I’ll be travelling back to London for 3-4 days to have some tests done (MRI of the brain & spine, CT scan etc), one of which is to test for a incredibly rare condition that causes migraines on the left side of the brain only (which mine are). For this test, I’ll be having a injection into the back of my spine which has got the treatment to cure this illness and two injections of water, we won’t know what order their put in but if one of the days I’m injected with the right medication and my migraine stops almost instantly, then I’ll be diagnosed. If this doesn’t work, we’ll move onto the next option which is trying trial drugs that are new to the market. If none of this works still, then I’ll be having surgery to drill a hole through my skull and place a pressure monitor into my brain – this will give the most accurate reading of the pressure levels in my brain and will show if I’ve got low pressure that could potentially be causing these migraines.
The main thing my two neurologist said to me, is that they’ll go above and beyond to try and sort these migraines for me. My daily life is deliberated by these migraines and it’s nice to know I could be cured sooner than I thought *fingers crossed*.
Cardiology – 4th April
this appointment was my last appointment with my consultant as he’s officially retired which is such a shame. If it wasn’t for him, i would of had a heart attack by now and thanks to him and his research in PoTS he’s practically saved my heart from overload.
This appointment was bitter sweet to say the least. He was one of the first doctors to start diagnosing me with illnesses and always went above and beyond to do what he could to control my PoTS. I’m currently still getting symptoms almost everyday due to my PoTS and I’m really struggling with my autonomic dysfunction which comes alongside PoTS. Despite being on beta blockers, I’m still getting quite bad heart palpitations which sometimes lead to me feeling really poorly. Unfortunately, there is no other treatment other than the one I’m on for PoTS so I’m starting to do some research in finding ways to cope myself (this is what my consultant recommended doing). He himself actually is thinking of starting a trial for PoTS where you MRI the brain and see how the brain function affects symptoms of PoTS and he asked if I’d be a trial patient if this was to go ahead, in which of course I said yes. We need more doctors like him!
Haemorrhoid Operation – 5th April
something I never really talk about in detail is my digestive tract paralysis, in particular my bowel paralysis. now, I know many of you will understand why, plus I don’t think many people would want to read half the things I go through due to my condition.
But, for some reason, I feel like I want to talk about this subject in particular because it isn’t just something I have to deal with… many people world wide get haemorrhoids at some point in their lives and it’s something which is unbelievably painful.
Like I wrote above, due to my bowel condition, I suffer from many different problems but a big problem I’ve continued to deal with is haemorrhoids. After many appointments back and forth the doctors, finally my gastro consultant referred me to the haemorrhoid team to finally get some proper treatment as cream doesn’t cut it.
When I finally met with the team, I had to have a camera test to see the extent of the haemorrhoids and any damage they’ve done due to the amount of time they’ve been there. There’s 5 different stages to haemorrhoids, 1 being mild whereas 5 is major, I’m currently at grade 4-5 so as you can imagine, the pain is indescribable. So, I was told that towards the end of this treatment I’m currently having which is called ‘elastic banding’ (Rubber band ligation is a procedure in which the hemorrhoid is tied off at its base with rubber bands, cutting off the blood flow to the hemorrhoid. This treatment is only for internal hemorrhoids) ill have to have surgery to remove the larger haemorrhoids. The elastic banding treatment is incredibly painful, especially when I have to have multiple bands done at the same time and currently I’ve had two rounds of treatment and haven’t noticed a difference but this is a process I’ll continue to go through until their happy.
so if any of you have been struggling with haemorrhoids and haven’t found a treatment that works, trying this may be your answer. Ask your GP.
Maxillofacial – 11th April
If you’ve been reading my health updates for a while now, you’ll know I’ve been through a real long journey with my teeth. In 2014 I had a three hour operation to attach chains to four of my canine teeth as they were refusing to grow by themselves. It took around three years after this operation for 3 of the 4 to grow through but the 4th tooth… well its just being difficult.
Therefore, at the beginning of the year I decided I no longer wanted treatment for this tooth as it was refusing to grow the way it should despite having that operation. This meant that I’d be having a bridge put in instead to give me a full set of teeth. Before this could happen, I’d have to have the chain remove from the tooth as it could possibly result in infections and further problems if I were to leave it.
So, after months of waiting, surgery day finally came! Now I didn’t go under general for this, I just had local anaesthetic which to be honest, didn’t partially bother me as long as I couldn’t feel it. It became apparent when they were cutting my gums that my canine tooth was actually growing into my jaw rather than upwards which means I will have to have a meeting with an anaesthetist to see if i will be needing that tooth removed? apart from that, the surgery went well and the pain didn’t last as long as I thought it would. So, I’m hopefully going to have a full set of teeth by the end of the year, ekk.
Dietitian – 17th April
Since leaving the children’s hospital around 3 years ago, I haven’t actually seen a proper dietitian just my gastro consultant whose continued to deal with my needs. But back in November, I wrote a health update which explained that my consultant wanted me to have a feeding tube placed therefore I needed a dietitian.
Since then, I have seen my dietitian a couple of times regarding my tube. Firstly we spoke about what I can and can’t eat, for me, I can only have liquids and only certain ones at that. I’m allergic to dairy, therefore anything in that region is a no-go for me. Any drinks which have a thickness to them is a no go. So I basically live off apple & mango juice, soya cold coffees and water, that’s literally it for drinks then when it comes to eating, the only things I can really tolerate is soya yoghurts and icecream, so it’s pretty basic and boring.
So, as you can imagine, a feeding tube was desperately needed after my NG tube failing. Now, I know many people often wonder why I can’t eat and that’s due to Gastroparesis (Gastroparesis is a condition in which your stomach cannot empty itself of food in a normal fashion. It can be caused by damage to the vagus nerve, which regulates the digestive system) and Ehlers Danlos Syndrome. I’ve not been able to eat for over 5 years now, and I know that may seem hard to believe to some people due to my size but unfortunately that’s because of the rest of my illnesses.
So my dietitian weighed me, gave me massive amounts of advice towards my tube and how it would be after my operation and we both decided that the best feed for me would be a soya feed filled with fibre. the feed is going incredibly well and I haven’t thrown up once so far. We also spoke about the amount and speed of which it goes through the tube which at the moment is very little at a very slow rate but I’m tolerating that well so we’ll be upping slowly.
Tube Fitted – 30th April
As many of you will know if you read my blogposts regularly, I was meant to have a PEG feeding tube placed back in February but due to complications in surgery, I wasn’t able to have it done. So we was told I have to wait for a RIG feeding tube fitted, which could take weeks.
After waiting 12 weeks for this surgery, finally it happened. The only problem with having a RIG fitted, is that you have to stay overnight in hospital, so before you can have the surgery done, they have to find you a bed. We waited from 11.30am till 3.15pm to find out wether they had a bed, (3.30pm was the cut off time for the surgery to be done). Luckily, at the VERY last minute, they found me a bed!
So, I finally had my surgery. I was completely awake for my surgery, had no sedation just local anaesthetic which actually wasn’t as bad as I thought. I could feel pressure as they was doing the surgery, which was the weirdest feeling! I had a bit of a awkward moment when I projectile vomited all over the doctors, myself and the nurses, I think it was the pressure of them pushing the tube into my stomach. Thankfully, the surgery was only a hour and half, and quite honestly, it wasn’t as bad as I thought.
The first week after the surgery was a real struggle. The pain was worse then I could ever imagine, breathing was difficult, sitting still was difficult and moving was near on impossible, so I was confined to the same position. We had my feeding tube nurse come to visit, I was told the pain for a RIG is for some reason more painful then a PEG therefore the pain was bound to last for at least 2 weeks. Apart from the pain, the tube continued to work well and I tolerated the feeds well.
Week 2, the pain was beginning to ease and becoming more bearable. Breathing was much better as was the pain whilst I was sitting still, the only pain that wasn’t getting better was the moving, it was still incredibly difficult. Yet, on Friday the 10th May, I began to get a burning sensation/pain which I hadn’t had before, this was a different type of pain and it was happening every time I moved. the best way to explain the pain is that it’s what I’d expect the feeling of someone putting a cigarettes out on the skin – sharp burning sensation which continued to happen throughout the day. I ended up having a FaceTime with my nurse who thought it could be acid seeping out so recommended to keep an eye on it. As the weekend went on, the pain was getting more and more frequent so on Monday my nurse FaceTimed again. She asked to see my gore (bandage which sits around the tube to stop it from rubbing) as I’d explained to her that it had some puss on it and with the pain aswell, I was concerned. Anyway, her/myself noticed that there was fresh blood on the gore also, so she wanted me to head straight to A&E.
What an absolute joke that was, we ended up sitting there for hours watching the time on the board to see a doctor slowly get longer and longer. When we finally saw a doctor, she prodded and poked the tube then explained she had no idea what she was doing and was quite aggy with us. Anyway, after a long day, we found out that the tube is in fact infected & the disk which is sitting on my stomach has rubbed the skin underneath and has caused an open wound which is were the bleeding is coming from. I was given some antibiotic cream to put around the tube to try and stop the infection from spreading, especially into the open wound. A swob was also taken which came back with a certain infection, therefore on Thursday 16th I was put on strong antibiotics to see if the infection would get better. Unfortunately, those antibiotics didn’t work either so today (Monday 20th) I went back to the doctors. My GP took another swob as the infection is worsening and put me on some stronger antibiotics. If these don’t work, I’ll be going back to A&E on Thursday to hopefully get things sorted!
Apart from that, I’m finally getting into a routine of looking after the tube, cleaning it and setting up the feeds. I’m tolerating the feeds well and changed the water in the ballon (that’s what’s holding it in place in my stomach) which I’ve now learnt to do myself.
now that I’ve rambled on for a good 20 minutes, I’ll stop writing so I don’t bore you!
I know that this may seem incredibly long, but I always want to share with you my updates as I know many of you follow me for my illnesses. I just want to raise awareness and help people understand what I’m going through and what happens at my hospital appointments.
Thank you so much for you never ending support, it means more to me than I’ll ever be able to tell you or describe.
Sending you tons of love and hugs as always,