This month I am joined by Gabor who is 30, has PV, and is my unofficial patient buddy. Gabor and I met at my first MPN Voice patient forum at the top of Guy’s hospital in 2016. Anyone who has attended a forum there will know that you get remarkable, panoramic views over the city of London, saving you a trip to the neighbouring Shard. However, the best thing about this event was not the striking ‘penthouse’ room, nor the excellent and informative talks by MPN clinicians, but rather the fact that I met Gabor who remains my great friend today.
I can still remember Gabor walking over to introduce himself after we had collected our patient packs and name tags. He had come straight from work and was the only other young patient attending. We chatted away about our shared experiences and swapped symptom notes, both long-term migraine with aura sufferers who had experienced significant improvement on taking a blood thinner and in Gabor’s case, having venesections. The relief at meeting someone who was also in their twenties and had trodden a similar path was enormous and incredibly meaningful. Still in limbo about my diagnosis, I joined the PV breakout group and a photo of us sat together in a circle of patients continues to be on the frontpage of the MPN Voice website; a positive and memorable moment captured in a journey that until that point had been worrying and confusing.
This chance encounter at Guy’s hospital 5 years ago means that Gabor and I are not ‘officially’ part of MPN Voice’s buddy programme. If you haven’t heard of the scheme before, you can find out more here: Buddy Programme – MPN Voice. It is a great initiative that pairs up similar patients in a peer support scheme, offering us someone who can be a receptive sounding-board and help navigate the twists and turns of an MPN diagnosis and journey. This is valuable for MPN patients regardless of age, but can be especially important for young patients who may feel scared, disorientated, and isolated by their diagnosis.
Indeed, a brief glance at any research paper or patient literature will exhibit a principal focus on MPNs in older age groups. Similarly, a quick scan around the audience at any patient forum offers a stark reminder that the ‘average’ attendee is not under 30. This is not to say that you can’t make meaningful connections across the age spectrum. On the contrary, I have received great comfort and advice from patients twice and even three times my age, and I really value their insights and friendship. What is worth stressing, however, is the positive impact that knowing Gabor has had on my perception and acceptance of having an MPN.
Gabor and I keep in touch via WhatsApp and social media. Pre-Covid, we went for dinner after patient events in London and now have to make do with the altogether less appealing Zoom call…. If I have a question about a symptom or aspect of the disease, I know Gabor is there to answer and offer his thoughts and opinions. When I have been worried about a scan or a test, Gabor has willingly shared his experiences, making the unfamiliar and unknown a little less daunting. During the pandemic, we have pinged each other articles and press releases, and discussed our respective understanding of risk and how that might impact our choices in everyday life. Just knowing that someone else out there has an MPN and has walked in the same footsteps at a similar age is very reassuring, and for that reason alone I would encourage anyone who is yet to find a fellow patient to request a buddy through MPN Voice. It would be fantastic if over time, we could bring together a group of young MPN patients from all over the world and create a network of contacts and support systems.
I am really delighted that Gabor has agreed to kick-off my ‘In Conversation with…’ series, which will be appearing on multiple blog posts over the coming year. As a young person with PV, he has some fantastic insights to share, so I hope you enjoy reading our first Q&A!
A: Gabor, thank you so much for agreeing to be the debut guest on my blog! My first question is, how old were you when you were diagnosed with an MPN?
G: Thanks, Alice – happy to be here. I had just turned 17 when I was officially diagnosed, although looking back at both my symptoms and also some blood test results from when I was younger than that, it is likely that I already had my MPN many years before then.
A: Can you describe your journey up to reaching a diagnosis?
G: I was living in Spain and was having a series of tests done due to some unrelated issues I was experiencing – frequent nausea and vomiting over the course of months. The blood tests revealed an unusual platelet count, haematocrit, etc., and so the doctor explained to me that although the blood test results didn’t explain why I was experiencing those symptoms, the results were something they needed to refer me to a haematologist for.
After some further testing, including a pelvic bone marrow biopsy to test for the JAK2 V617F mutation and testing for the BCR-ABL mutation to rule out leukaemia, I was diagnosed with ET in 2008. This was later revised to PV somewhere around 2011-2012 when I was at university.
A: Do you remember how you felt when you were told you had a rare type of blood cancer?
G: It’s been so long it’s actually a bit difficult to remember! It was already obvious that something was wrong, so in some ways it was not a huge surprise.
I wasn’t thrilled, but the doctors didn’t make a big deal of it at the time, so I didn’t either, especially as with my original ET diagnosis all it meant was taking aspirin daily and going for a blood test once every 6 months, which was hardly onerous.
A: How did – and do – you approach speaking with family members, friends, and work colleagues about your diagnosis?
G: I’m always very open about it and generally people have been very understanding. That doesn’t mean that I immediately disclose it to everyone, but I’m of the opinion that it is not something that should be hidden.
A: What are your symptoms of PV, and have they changed over time with age or treatment?
G: It’s sometimes difficult to establish what symptoms are as a direct result of my PV. The key ones are migraines, tinnitus, a slightly enlarged spleen, and occasional mildly itchy skin, especially after a hot shower. Thankfully the migraines went away as soon as I started having regular venesections, so overall I’m fortunate that the symptoms I have currently aren’t severe.
A: How did you manage your MPN at school and university?
G: Pre-diagnosis, the main impact on my time at school were the migraines as well as the large numbers of tests being run to facilitate diagnosis. The migraines were very bothersome but there was nothing I was able to do about them and they were thankfully fairly infrequent. On the days when I did have one I’d simply have to go home from school or university and attempt to sleep it off in a dark room with a cold wet rag on my forehead. Other than that, it was mainly just a life admin issue, making sure I was scheduling my blood tests and clinic appointments, attending them, etc, so it did not interfere much with university.
A: Has PV impacted any of your decisions about applying for certain jobs or working in particular industries?
G: Yes. I originally wanted to become a paramedic. However, for a combination of reasons, including my body not dealing well with lack of sleep and also my MPN diagnosis, I decided to go for a more ‘traditional’ / lower stress job in the form of nuclear engineering, which, being engineering consultancy, is largely done from an office.
A: Do you have any tips for managing a chronic illness in the workplace? For example, scheduling venesection appointments?
G: My three tips are:
- Be upfront with your line manager and don’t be afraid to tell them what you need. More often than not, they’ll be thankful that you know what you are doing and will support you by agreeing to whatever you are proposing, as long as it is sensible!
- It is up to you whether you disclose the full details of your condition to your workplace. The independent occupational health doctor who assessed me at the beginning of my first job wrote a letter to my line manager and HR detailing at a high level what accommodations might be required whilst anonymizing the condition, in my case: no recommended changes nor restrictions to work duties, but highlighted that work allowing me to attend my appointments was crucial.
- My experience across two UK companies was that work time missed due to an appointment should be made up earlier or later in the week, unless your appointment runs to a half day or longer, in which case you can take sick leave for it instead.
A: Do you have any advice around approaching your consultations? Or preparing yourself for tests, such as a bone marrow biopsy?
G: This depends very strongly on how you approach your problems in life. I like to stay informed and involved, so when it comes to my MPN I like to understand what is going on, why we are doing certain things, etc. However, I know others who prefer to ignore it outside of their MPN appointments. It all comes down to what works for you.
A: What has been the biggest challenge of living with an MPN?
G: I’m going to cheat and list two things in joint first place! The uncertainty around its impact on my vulnerability to COVID-19 and also the uncertainty around what the disease progression will look like for me over the coming years and decades.
A: What impact does PV have on your life now?
G: It’s sometimes a bit hard to plan ahead for the future in terms of whether you should plan on the basis of remaining capable of working full time until retirement, or whether a more conservative approach should be adopted.
Additionally, it can sometimes be frustrating trying to fit in your appointments into a busy lifestyle, especially if you are split across multiple locations, including multiple countries.
A: How do you feel about most of the patient literature and medical research about MPNs being directed towards older age groups?
G: Although I understand why it is directed towards older age groups, it is very frustrating! Any time I come across something new regarding MPNs, I can almost immediately guarantee it is only semi-applicable, or not applicable at all, in some cases, to people my age.
A: Do you ever think or worry about what the future might hold with your MPN? If so, how do you manage those thoughts or worries, whether around disease progression or needing different medication?
G: Yes and no. It’s not on my mind on a daily basis, perhaps due to being lucky enough to not have severe symptoms yet, and from speaking to others, I think about it a lot less than many people. However, I do think about it occasionally. For me the best way to manage any thoughts like that is twofold:
- Think them all the way through, have an understanding and plan of what you would do in each case. For example, I have a rough outline plan in my head of what I would do in terms of housing, work, etc. if my MPN worsened and I became unable to work full time; and
- Don’t use fully, perfectly healthy as a baseline to compare yourself to. Be realistic and acknowledge that almost everyone (even your age) has a range of issues in their life – medical, financial, or otherwise, which means what you might be envisioning, a perfect MPN-free life, isn’t accurate.
A: What impact has Covid-19 had on you and your MPN?
G: It has made blood tests, venesections, and clinic appointments harder to organize and made attending them somewhat stressful when they fell during some of the early COVID-19 wave peaks pre-vaccination. Equally, it had quite a significant negative impact in terms of having to be more careful than many of my peers when meeting up with friends, dating, etc. which was frustrating. Thankfully people were generally very understanding and helpful! They helped me not feel left out even when I decided attending certain outings was too risky for me, and were always happy to meet up to do alternative things too, eg. an outdoors walk in the park.
A: What has been the best thing about being part of the MPN Voice community?
G: The catering at the MPN patient forum days in London! On a more serious note, it’s just having the opportunity to talk to others my age or younger with MPNs who I can relate to a lot more than older patients. I’ve also appreciated having the chance to
provide a bit of guidance and reassurance to those who are young and recently diagnosed, like yourself, Alice, when we first met!
A: Are you able to share any lifestyle changes or techniques, for example, diet, mindfulness, yoga or physical exercise and so on, that have proved beneficial for managing your PV symptoms?
G: Luckily my PV symptoms have been relatively mild, so they haven’t necessitated lifestyle changes, nor have they been something that lifestyle changes can necessarily mitigate. However, it’s good to keep an eye on overall health, so I try to exercise regularly, eat reasonably well, and sleep a lot.
A: Are you able to share any resources, for example, academic research papers, websites, videos, about young people and MPNs that you have found particularly helpful?
G: Truthfully I haven’t found any really good ones so far. The closest I’ve come to it has been attending the London MPN patient forums, where sometimes you get to speak to younger people and hear their stories.
A: What progress, initiative, or support would you most like to see for young MPN patients?
G: Perhaps some sort of online forum/group dedicated to young MPN patients specifically. Each time I see an article posted about someone young there are a few comments from new young patients reaching out saying they’re relieved to have found someone else, so creating something global and more visible would be great.
A: What gives you the most hope about the future of MPNs?
G: The expertise, energy, and enthusiasm of healthcare professionals working on MPNs. My personal approach is to not bank on there being any major breakthroughs in my lifetime that would radically alter how MPNs are treated, but just seeing how much effort professionals are putting into better understanding MPNs for our benefit already fills me with hope.
A: Finally, if you had to give one piece of advice to a fellow young MPN patient, what would it be?
G: Boring but important: ensure you take full responsibility for keeping a lifetime record of your medical history. After moving countries countless times, the medical professionals who treat me in each new country are thankful I keep on top of my records and can coherently summarise my MPN history to date. It can make all the difference if you understand what is going on and can therefore pick out the relevant bits of information to share with each new medical professional.
A huge thank you to Gabor for taking the time to answer those 20 questions and to you for reading the second instalment in this new young patient blog. I really appreciate all the messages you have sent me and am very touched by your support. Keep an eye out for next month’s Christmas blog post, which will feature another star guest…