Gwen Higgs underwent HSCT in Moscow in 2014. Today, she is a committed advocate for the use of stem cell therapy to treat all types of multiple sclerosis. She is a voluntary admin on many HSCT Facebook groups and is always ready with words of encouragement and reassurance. This is part two of Gwen’s story, if you missed part one on Saturday you can catch up here: https://50shadesofsun.com/?p=1499
Faced with negativity towards HSCT from her neurologist, who would not even look at the data she had put together, Gwen felt forced to make her own way. So, it was back to the computer and the internet.
She said: “I discovered that (at that time) the only two places in the world which would treat PPMS with HSCT were in Israel and Russia. The cost of treatment in Israel was about quadruple of that in Russia, which seemed an impossible amount of money to find! Luckily, I found blogs from patients who had had treatment in Russia – including one by the very first international patient to be treated there, who is also English! – which were all very positive.
“I spoke to Dr Fedorenko, the HSCT haematologist in Moscow, and he agreed that there was a strong possibility that HSCT would help me. I formally applied and was accepted for treatment, which I finally had in July/August 2014.
“HSCT in Moscow is entirely inpatient, from the extremely thorough pre-treatment testing until you are discharged, so I decided to go alone, partly to keep costs down.”
Asked how she would describe her experience in Moscow, Gwen smiled before saying: “It was like being in a cross between a Butlin’s holiday camp and a British hospital in the 1950s! The hospital staff were extremely efficient and caring – one only had to wait minutes for a response to calling them.”
There were about a dozen other international patients who arrived or left during the 35 days that Gwen was there – American, Australian, Norwegian – all at different stages of treatment, all supportive of each other. “I had got to know some of them beforehand, thanks to social media – so it was in many respects a meeting of like-minded friends. We are still in regular contact. I was also in daily contact with family and friends at home, thanks to the wonders of Skype, etc,” she said.
“I felt totally safe and confident in the care provided in Moscow – I think hospitals here could learn a lot,” she added.
The cost of HSCT in Moscow in 2014 was US$40,000. (about GB£25,000 at that time). The only other costs Gwen says she had on top were air fares and a visa, which cost a couple of hundred pounds.
As to the treatment and its effects, besides the temporary loss of her hair, Gwen recalls: “As I was actually going through HSCT, I realised that I could think clearly and that although I was tired, it wasn’t like the overwhelming fatigue I’d had for years. It was like a veil being lifted!
“Then, after HSCT I slowly realised I did not need to restart the bladder control medication, that I had been dependent on previously, as I was now able to control my bladder without it. It wasn’t perfect, but it was a lot better. Gradually, I noticed that I was choking and coughing much less frequently while drinking and eating than before – and today it is a rare occurrence.”
As she regained strength after HSCT, Gwen’s friends and family started pointing out changes they noticed. She said: “I could carry a cup of tea without spilling it. I could walk from one room to another without holding onto a wall for balance. I could stay awake all day. I could hold a conversation with more than one person at a time. I could walk out of the house without having to wear a foot brace.”
Her recovery is not complete but then no-one is claiming that HSCT is a cure. Gwen says: “My mobility is still fairly poor. I use a walking stick outside the house and I can’t get very far without my legs seizing up. BUT – it’s not worse than before HSCT, and I’m certain that it would have been, without the treatment.
“After my return to the UK, I was monitored by a haematologist for three months who was pleased with my recovery and I haven’t had to return to Russia for follow- up checks – updates are by email,” she said.