East Grinstead hospital

So, you may have been wondering (or not) where I have been since the London marathon. Two weeks post marathon I had scheduled surgery for another nerve issue in my stump which was getting considerably worse throughout my training. I had another TMR surgery with muscle graft, which went really well. Unfortunately I had a nerve catheter in my leg for pain control post op. These work really well and really help with pain, but for me, they seem to cause infections. We diddnt know this trend until this point. I had the catheter removed after 4 days and was already very poorly with a huge infection. I ended up going back to theatre to have more surgery, and my leg was filled with puss. I was then put on very strong Intravenous antibiotics, but after another week the infection returned, and so this meant more surgery. More antibiotics, more cannulas and more pain. I felt pretty unwell. I lost about a stone in the month I spent in hospital. The saving grace was that my surgeons were phenomenal, and the nurses at East Grinstead hospital were amazing. They were so efficient and attentive. I can’t thank them enough for their care.

After a month, I was finally well enough to go home, but was still in a considerable amount of pain. But after a week more, I decided it was time to get back to training. Unfortunately I had lost quite a bit of muscle and strength, and so the marathon distance which I was used to wheeling, had become almost impossible, especially in the rain and freezing cold weather. But all hope is not lost. I am still out there training as before and building my way back up to marathon distance. My goal being to make it back to marathon before Christmas day. This will be weather depending, but I will do my very best to get there. I don’t give up easily, as you all know!

I can’t wait to get back to where I was before. Some exciting news came when I was in hospital, I have been accepted for the London marathon again next year, so I will be entering and attempting to beat my own record. So this provides a huge incentive for me to get back there ASAP. Also, if all goes well, we are a go for attempting lands end to John O’groates using my everyday non-sport wheelchair, which will be another world record. We are hoping for August 2023. So this is another huge incentive. So it’s training, training, and more training for me. I am loving it, and hating the cold! It makes wheeling exceptionally tricky, which very slippy hands. But, it is all good strength work, and I can’t wait to reach some new goals. 😍🙏

The sofa blues…

Oh how I miss wheeling, and handcycling… yes, as you may have guessed, I’m still not up to par. I’m currently awaiting more blood results which will hopefully tell me why I feel so awful! I’m extremely lethargic, to the point of wanting to sleep all the time. Nausea and lack of appetite kind of go hand in hand, and just feeling generally weak and feeble! So, what do you do when you can’t do what you want? Well if your anything like me, you get frustrated and annoyed with your body. It won’t buck up and get better in the timescale you want. The swimming pool is calling, and my body isn’t listening! I’d like to say that I’m a good patient, but I don’t think that I am. I want to feel better now…and don’t like having to wait for my body to behave! But that is what I have to do. So I’m sat watching the paralympics, wishing to be that good! (Maybe one day!). But it won’t happen from a static position on my sofa!! So for now, when I can I’m writing, and doing a bit of drawing, but finding myself falling asleep doing that! It was my 13th wedding anniversary on the 22nd. I managed to be out with my lovely wife for a couple of hours, but then had to go home. I could eat a tiny bit of my meal, but had to leave most of it. I felt like such a party pooper! But when things are like this, it reminds you to give it your all when you do feel well, and to embrace every moment.

So for now, it’s back to convalescing on the sofa, and hoping to feel better soon. Then watch out David Lloyd, for a will be in the pool as much as I can be. My mum would have said, ‘these things are sent to try us!’ And I completely agree. But still wish they wouldn’t!!

Come on! Let me train!!!

Well, as you may guess, I’m starting to go a little stir crazy! This infection is relentless. I’m now on another type of antibiotic, Co-amoxiclav. The Flucloxacillin ran out the other day. It was very strange. I went to bed feeling a bit better. Then by lunch time the next day, after not having any antibiotics, I was back to feeling awful again. My heartrate was over 100 again, known as Tachycardia. I felt extremely tired, to the point that I couldn’t stay awake. I felt very sick and had no appetite at all. I also felt quite shakey. I had no temperature, but have not had a significant temperature (pyrexia) throughout the whole period of my illness. There is a common misconception that you have to have a temperature to have an infection or sepsis. My consultant said he thought I was septic when I finally received IV antibiotics. There is such a thing as hot sepsis, where you have a temperature (a temperature above 37.6) and cold sepsis, where your temperature is normal or below. Normal is different for everyone, but in general the normal range is 36-37 degrees. I am normally 36-36.5 when I’m well, so I know if I’m at 37.5 I’m usually not too well. We’ll my temp was a bit up bit not into the 38 plusses, which is where worrying begins. So at first they just focused on that. Until they finally realised that my other observations, like high heartrate (over 100 bpm) and low blood pressure was telling a story. Normal blood pressure is 120/80. Low is considered 90/60 or below. High is considered to be 140/90 or above. Mine was 60/40 at one point. My heartrate was 140-160 at rest, whilst laying in a bed. So there was no doubt I had a problem.

So, observation lesson over, I was basically feeling rubbish again. I decided to try 111 first before going to A&E, hoping to speak to an on call Dr. I spent over an hour with the phone on hold, and eventually gave up. So we were off to A&E again. We’ll bloods were taken and my platelets were high, my red blood count was low, and my crp was up. All showing infection. So I started on antibiotics again! The next day I felt a little better. Then on Monday these ran out and I fortunately spoke to a great GP at my local Dr surgery who decided to try another one. So here we are. Awaiting more blood results today! But still feeling rubbish to be honest.

So here I am. Still feeling to rubbish to train. We now have access to a new pool and gym. My wifey, who is amazing joined us up to David Lloyd whilst I was in hospital, as she knew how desperate I was to swim again, and start training for a Triathlon. So now I’m at home, my handbike now accessible, my wheelchair itching to get going, the new pool and gym waiting for me…and I’m still stuck to the sofa. Finding it difficult to eat more than a bowl of cereal and a piece of toast in a day. My muscle mass is deteriating, and I’m feeling absolutely rubbish. No energy at all. Then I’ve been sat watching the Olympics, which makes me want to train more than ever. I want to do my half marathon, but now I know I can’t. I want to do a marathon. I want to start training to do Triathlons. Hopefully one day an Iron-man. I have so many ambitions, and yet being glued to the sofa, is not one of them! It is quite depressing to be honest. I’m not too patient at waiting to do things I love! I just wish this infection would listen to me, and GO AWAY!!!

So for now, it’s fingers crossed. Try to eat, and be patient 🤣. One day I will be back out there…and that day will be amazing!!

So good to be home.

I’m home, as you may have guessed from the title. I finally made it home at 7pm on Tuesday. I think it was probably the longest discharge in history! Saw the Dr’s o Tuesday Morning at approximately 9am. They said they’d have me ready for lunch time!!! My wife made her way after work at 2pm. I ended up sending her home before she even made it to the hospital, knowing I was nowhere near discharge. I had gotten myself dressed, and my bag was packed. By 3pm I gave up, and my pyjamas were back on!! 🤣 My wife then remade her way at 5pm, as we were told that things were ready! At 7pm finally I was discharged. I waited 10 hours for a discharge letter and a few tablets! But, to be honest, I didn’t care. By the time I got through my front door, and into my pyjamas again, and was cuddling my little Lily, nothing else mattered.

My experience on Wynard ward was thankfully very different to the disastrous 13 hours on AMU. All of the staff were lovely. I had a fantastic student, and I wish I remembered her name, (I’ve always been useless with names!), but she was incredible for her level. She’s only a few weeks away from qualifying, and I’ve met nurses who have been qualified for years who don’t sho her professionalsm, level of caring or expertise. She will make a fantastic nurse. I do know she had a job already, and will be mentored in it by my best friend from university, which is amazing. The Nurses were all lovely. The endless cannula attempts. I think I counted 24 attempts in total! My veins completely gave up, and ran for the hills!!

I am still a little weak, and on antibiotics. Am very much looking forward to getting back to training. My lovely wife joined David Lloyd whilst I was in hospital, so I can swim again. In a pool which will not be overcrowded. It also has a handbike in the gym. I’m hoping to do my first swim on Saturday, all being well. I’m also going through classification for Triathlon for next year. There’s one in May which I’d like to do. As for my half marathon on the 5th of September! I’m going to have to see how I get on with training. I’m desperate to do it, but I know I’ve been through alot in the past 6 weeks, so have to build up slowly, and accept it if I can’t do it. I will find another to do instead! So for now, I’m trying my best to eat when I can, and stretching. The antibiotics make appetite a challenge, and make me very nautious, so the only thing I can stomach at the moment is toast, cereal and midget gems!! Not the best diet for fitness!!! But again, I’m home…. 😁😁

And I’m in again….

So, it’s been a few weeks. Finally made it home on the 19th of July from East Grinstead QVH hospital. They were incredible. Their treatment and kindness blew me away. Unfortunately on discharge, and just before I started having pain in the back of my leg where the nerve catheter was situated. We hoped it was just bruising and swelling from the sheer quantity of fluid that had gone into my leg. So after a couple of days at home, the pain got worse, and a tennis ball sized lump started to form in my hamstring (muscle in the upper back of your leg). I couldn’t sit on it, or even touch it. Systematically I also wasn’t doing too well. My heartrate was permanently over 100bpm which is known in the profession as Tachycardia, and my blood pressure was very low. These are all signs of infection. After a few days I put through an econsult with my gp. I was told they would phone between 1-6 on the Friday, but no one called. By 8pm the pain was so unbearable that we made the decision to go to A&E.

So after a bit of a wait I was trialed, and seen by a lovely Dr, who said I had to be admitted. They were very busy, and I was told that when I got to AMU, which is an emergency ward, I would be given pain relief, and they would scan my leg or do an ultrasound, and would be started on antibiotics. She reassured that they would get to the bottom of it. Well, none of this happened. I spent over 12 hours in a bed begging for pain relief, and no one would listen. Not only that, but they took my own medication from my bag, without my knowledge when I was in the bathroom. I have a chronic pain condition, and can’t go without my usual medication, and they wouldn’t even give me those. They did no tests, gave no treatment, and basically ignored me completely. I asked why, and was told they were busy. There were 5 other people in my bay and all 5 relieved treatment. Yet I was treated like I was a junkie asking for meds. They made a judgement and that was that. It wasn’t until 13 hours when I had asked repeatedly to speak to the ward manager that she showed up. She was lovely, and had no idea of what I was suffering. She immediately gave me my own medication back and I told her I wanted to go home. The crps was out of control by that point. I was briefly seen by a Dr, and despite the overwhelming symptoms pointing towards an infection, he refused antibiotics. Over the weekend I deteriorated further. I saw my gp on the Monday, who said I needed immediate treatment. But I had to go back to the same place. Well I just broke down. I couldn’t bear to be treated that way again. But she was amazing and spoke to the manager. Told her what had happened, and asked if I could be seen in the other part of the ward. So I was. There I had an ultrasound where they found a large sack filled with fluid inside my muscle. I was started on antibiotics and let home with an appointment for a scan the next day. I had my scan which showed a huge amount of swelling and a large fluid filled sack. The next day I was admitted for treatment. I ended up on the sister ward of amu and they were much nicer. I ended up being moved to Wynard ward where they’ve been wonderful. I had the lump drained by an amazing consultant in radiology. It was filled with what he called, pea soup… lovely puss. He took one look at my observations and said that I was septic. I was immediately started on IV antibiotics and oral antibiotics… and here we are. They know there is stafflococcus in my leg, but not sure as yet if its the MRSA (MRSA is a type of bacteria that’s resistant to several widely used antibiotics. This means infections with MRSA can be harder to treat than other bacterial infections) or another type. So I’m in isolation just incase, and awaiting news from microbiology, hopefully tomorrow.

They have been lovely on this ward. All the nurses and Dr’s have been fantastic. My veins are all rather rubbish now, so if my antibiotics need to continue longer, I may need a more permanent solution, like a long line or central line. Pretty scary stuff to be honest. So now I’m just waiting for news. Crossing all fingers that I can go home soon, and finally be on the road to recovery. The access and infection are a very rare complication of having a nerve catheter. So of course, being the Queen of rarities, it was bound to happen to me 🤣. Still, onwards and hopefully upwards. I’m busy watching Nurse Jackie box set, and my wonderful wifey has been to see me every day, so can’t grumble too much. The TMR surgical wound is so neat and I think it’s already helping. So, hopefully good news for tomorrow 🤞