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Weils Disease – Leptospirosis

I’ve kept this quiet for the last 10 days as I didnt really want too many people to know. The post below was what I put on the 2 kayaking groups we go with, so it’s aimed at paddlers a little, but, it also lets everyone else know what has happened. I’m still rushing about everywhere, so may not have time to reply to any messages. Currently she is in Ward 35 of LRI, and doing well, in fact today she was far better than yesterday, so is improving each day.  She has her phone now, so when she has the energy, she may reply to some of the messages she has. 

I think it’s safe enough to tell the story now. It’s long, but please read it as it may save your life.

A few of you have met Rae Baker, anyone who goes to the Nene will have seen her multiple times.

On Monday 12th Nov. she said she was feeling like she was coming down with a cold. Tuesday was the same, aching, but no sniffles/sneezes. Wednesday she said her legs were really aching.She didnt go to work as she felt terrible. She thought this was due to a bike ride the previous Saturday.

Thursday, her friend came round, and said she looked awful and took her to the Doctors. The Dr. sent her to the hospital to be checked out. Due to daft mistakes, firstly they didnt question her enough. Again, the aching legs were put down to a cycle ride, however, that ride was not hard, 6 miles total, there were some steep hills, but it was a sort of ride that you dont really get tired out from. Then, her friend noticed that she was really off-colour, going slightly yellow. She didnt say anything at the time, thinking that she was like that as she was ill (she was!). So the Doctors diagnosed her as having fatigue, and prescribed cocodamol for the aching legs.
Friday she was worse, in bed for most of the day. 

Saturday was the first time I had seen her in daylight for a week, and I was really shocked, she was going yellow. After an argument with her (she said I’m ok, no need to call the doctor), we finally got some help. (3 phone calls to 111 over 1.5 hours). 
A paramedic arrived, looked at her, and said hospital immediately. Into A+E. The usual questions, blood tests etc. While waiting, I googled Weils disease. The symptoms were exactly as she had been having – feeling unwell/flu like, aching lower limbs, going yellow. I told the paramedic this, and was dismissed by her saying ‘anyone can google symptoms and its so rare it wont be that’. A doctor then examined her. I said please check for weils. Again, he said it was very unlikely, and they thought it was gallstones. As Rae was getting really ill then, and being a bit confused, she was asked where she had been on holiday (they were looking for tropical/rare diseases) and she said Italy, and she had been riding a bike the previous week which was a tough day (it wasnt). In her state of confusion, they believed all of what she said. So the aching legs were from a bike ride, and the condition she had was from a holiday in Italy , which had been 6 months before!
I finally got a bit more sense from a more senior Doctor, who did ask the right questions, and I debunked the myths about exotic holidays and all day riding up a mountain. He did say he would look at Weils, but it was still unlikely.

Blood tests came back, showing increased levels of protein in the blood. Rather than thinking ‘the kidneys are not working’, the staff thought she had been drinking protein/creatine drinks after a bike ride.We had 3 staff ask what drinks we had used during the bike ride – err, water and possibly a tablet of electrolyte! 

So it was now 9pm at night, and she was deteriorating. I couldnt do any more, so went home. I got a call at 3.30am, telling me they had transferred her to the Intensive Care unit to monitor her better. I didnt think anything of that, there wasnt anything I could do, so I asked what time I could visit – 1pm Sunday.  12.30pm Sunday, I get a call, please come here asap as there has been a change in her condition. They wouldnt say any more over the phone. Got down there, and find she had been deteriorating all night, and had been having seizures around 11am. Due to that, and her general condition she was put into an induced coma, and under life support, along with dialysis as the kidneys looked like they had given up. It was clear the liver had failed as she was totally yellow. To say this was a shock was an understatement.

Worse was to come. The Consultant spoke to me, and said it would be best if I called all of her relatives to come to see her, as they were not sure if she would last the day.
Believe me, that is not something you want to do.

He said she was as close to death as you can get without dying. Her kidneys and liver had both given up, along with other ‘minor’ complications. The rest of Sunday and Monday were pretty grim, but then there was some good news, the dialysis was working, and the toxins in her blood were reducing. She was still in danger, but was better than before.

Late on Monday, she was taken out of the induced coma, and the breathing tube was removed, so she was breathing for herself, with the help of an oxygen tube in her nose.Things continued getting slightly better each day of the week. 

Today, she was taken out of the Intensive care unit, and put into the Infectious disease unit, which is still pretty full on, but, she is out of immediate danger now.
She is still pretty yellow – the liver was badly damaged by the disease, but it does heal itself over time. The pic below was taken on Friday, my hand, her arm.It looks like the kidneys will be ok, 3 days of dialysis really helped them. She struggles to talk , but is getting a bit better each day, and has eaten a little today too (she has been on a feeding tube for the last week). She cannot walk as she is so weak. The Staff think at least another week in hospital, then 4 -6 weeks taking it easy at home, maybe more.

It’s all good at the moment. Yes, it was Weils disease / Leptospirosis.

We’ve been asked where she caught it. We dont know. 2 canals and one river were paddled in 8 days in the incubation period. I was there too, and others on here were at the others.

The point is, it can be caught anywhere there are rats. Take precautions. But, the major thing, if you are feeling ill , get help. It is easily cured in the early stages with antibiotics. If you leave it until you cannot move, then you may be too late to save yourself. Insist on the medical staff checking for Weils.

Words & Image: Alan Lee

2 Comments

  1. Very similar situation I found myself in. I do open water swimming and started to feel unwell with the very same symptoms. After 4 days visited the doctor and was told to take some paracetamol and rest. My wife is a nurse and she was concerned that by day 6 of feeling by now dreadful that my kidneys and joints were extremely painful. Together with a nurse friend they diagnosed Leptospirosis so on a Sunday they dialled the out of hours doctor and we went to the local hospital. By this time I was feeling dreadful and didn’t really fully know what was going on. I was blue lighted to Hull RI and spent the next week there. I don’t remember that much but my wife told me it was a battle to get them to understand what the issue was and it was another 24hrs before I was put on intrevenous antibiotics. Never felt so ill in all my life, and after 5 days I was released from hospital. No lasting complications thank goodness. Hope Rae makes a full recovery x

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      November 30, 2018 at 8:00 am

      Glad you are ok. I’m not sure if the number of cases of weils disease are increasing or if the number of cases I hear about are greater due to social media etc. The worst I have ever been after paddling was in the mid 90s. I picked up something from HPP, was violently ill for a few days and spent the next six months plus with kidney and associates issues. Thankfully now ok.

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