Wednesday, May 1, 2019

Meet our Patient Representative


Pierre Weinzweig has accepted the appointment as the patient representative of the Health & Hustle and will work with the team promoting health & wellbeing to patient groups within the hustle.  This is his remarkable story from serious illness to recovery.  He is a perfect roll model for patients who have experienced serious conditions and using activity as part of their rehab and recovery.

Since 1992 I have been determined to keep fit. I cycled to work every day (around 10 miles) then in the evening I’d watch movies while on a running machine. It was a great way to keep fit and unwind after a hard day at work. I gained and so did the family. During that time, I also shifted about 4 stone of excess weight. I felt great.
I went on a weekend break with my wife to Aberystwyth on 22nd October 2015 and was most confused when I felt breathless. I put it down to a change of medication for a clotting disorder I suffer from and perhaps not keeping my fitness regime up for a few days. When I returned to work on Monday 26th October 2015, I decided to speed walk to work at Gloucester hospital and was delighted when I covered the 5 miles in 45 minutes. The exhaustion I felt I put down to not being as fit as I thought I was, but as the morning wore on I felt more dizzy and ill so I visited A&E as I’d been instructed due to my clotting disorder. The medical staff admitted me immediately believing that I had abdominal clots. That was the last thing I remember until I awoke 2 weeks later. Apparently, 6 hours later I was admitted into Intensive care suffering from heart failure, and a number of unexplained observation readings.
It was discovered that I was suffering from bilateral chronic bronchial pneumonia with complications of septicaemia. This led to multiple organ shutdown and cardiac distress. The X-Rays showed that 95% of my lung capacity was congested. The fantastic intensive care team had the foresight to immediately contacted the Royal Brompton in London. They are the Lung and heart specialist centre for our area. My family were called in a number of times over the next few days as the staff felt I was not going to make it through the day/night.
While the specialist team were travelling to Gloucester I was fitted with a central line. This consisted of two tubes coming from my pulmonary vein and artery; emerging from my neck which were to be connected to an ECMO machine (Extra Corporeal Membrane Oxygenation). This would then oxygenate my blood, allowing my lungs to be treated and to self-repair. I was also put on a respirator and a kidney dialysis machine and put into a chemical coma to reduce distress. There was no guarantee that the Royal Brompton would accept me as a patient as there are only a few ECMO machines in the country and they had to be confident that they could help me. If they had felt that I was beyond their help I would not be here today.
When I woke from the coma 12 days later, I couldn’t lift my head or limbs off the bed, as I was so weak. Tests showed that my Adrenal glands were now non-functional so I was suffering the equivalent of Addison’s disease. This had an alarming effect on blood pressure with a standing reading of 70/50, (Normal for me was 129/70). It was a personal achievement to be discharged from hospital on the 15th December 2015.
For about a year after my illness I could walk no further than 200 metres with a Rollator. It took a great deal of time to progress to walking with a stick. My issue was balance and fatigue and the fact that I had also been subsequently diagnosed with Gilbert’s syndrome. I was also given ill health retirement from the NHS in March 2016.

I started using an elliptical cross trainer to help build up my stamina. My plan included copying a trip my parents made in the 1950’s where they cycled from Paris to South Wales, not an easy thing with the post War state of the roads. So, considering my poor physical health I created a route from Churchdown to Paris on Google maps, then translated my cycling times on the cross trainer into miles and marked them on the map. This took the format of 10 minutes cycling a day, which increased to 30 minutes over several months. I put this on Facebook and asked my friends to donate the Royal Brompton as a sponsored cycle. This delighted the hospital, when I told them and they asked me let them know when I arrived and to send a photo….the fact I was indoor cycling had passed them by, but what the hey, so PhotoshopTM came to my rescue. They published that in their newsletter so that other patients and staff could see the effect they have on patients and that life didn’t end after being in intensive care.

During this time, I also read about Kevin’s ‘daily push-ups’ for the armed forces. As I have a massive respect those guys, I fitted in some half push-ups every day. This helped me build up my upper body strength.

When I had completed the journey, to Paris and back I was asked by friends “what next”.. so I decided to plan a cycle trip to Pakistan to get a Balti, although cycling 5343 miles was a bit excessive. To ‘spice’ it up; every country I went through I looked up their National dishes, asking friends to vote on their favourite. I then cooked that for the family. It was such a great rehabilitation. I have worn through two friction belts since I started the trip. I started on 28th August 2016 and am just a few hundred miles to my goal. I have managed to build up an hour cycling in a session, and with care can get a 2nd hour in a day.
At the end of October 2017, I bought a Fitbit. It didn’t take long before I was invited into Kevin’s Challenges. This was a bit scary as I have an addiction to challenges and my family’s byword is now ‘Have you over done it again’ as I lay flat out moaning in exhaustion.
Within a few weeks of doing the challenge, I have built up enough strength and can control my balance to be able to walk short distances without the aid of my stick. I do most of my walking on the cross trainer in spells of 10 mins, 20 mins rest then back on for another 10 mins throughout the day. These challenges have helped me so much. My goal is to walk into Cheltenham or Gloucester in the first instance and then in time, without the aid of a stick. I used to do this before I was ill, but I am confident that the point where I can achieve this is coming closer. Thank you all for giving me this little incentive to realising that.