Living with Primary Myelofibrosis – A conversation with Emma

November 23, 2022
Personal Stories
Primary Myelofybrosis patient Emma and her family

It was soon after the birth of her second child that Emma’s unusually high platelet count was noticed for the first time, and just 2 months later she was told she had Essential Thrombocythemia, usually diagnosed in people much older than Emma. 

Here’s Emma’s story: 

 

Can you tell me, Emma, how you were first diagnosed? What prompted you to go to the doctor, for example? 

It was in 2017. When I was pregnant with my second child, I had a routine blood test done, and it turns out my platelets were elevated then, but that wasn’t picked up until later.  It seems that something happened during that second pregnancy — my first was completely fine — and after I gave birth, I had some complications with bleeding and clotting. 

Both? 

Yes both, I seem to have two different things going on both clotting and bleeding. My daughter was born in August, and by October I had a diagnosis of ET (Essential Thrombocythemia). Regular bone marrow aspirations followed, and by 2020 the disease had progressed to Primary Myelofibrosis.  Myelofibrosis is often managed with medications to help suppress the blood counts, but it’s not a cure.

So that’s what we did: we managed it with medication, until I fell pregnant again in June that same year. 

That pregnancy threw everything completely off kilter. We found ourselves having to make some horrendous decisions: either carry on with the pregnancy and run the risk of both me and the baby dying or terminate the pregnancy and be here for my other two children. We decided we had to end that pregnancy. It has been a big weight on our shoulders managing the effects of this condition and the toll it has had on me emotionally and physically, especially with two little children to keep up with. Managing fatigue and pain can be very challenging.  

Oh, Emma. I’m so sorry to hear that. What a horrible position to be in. 

It was awful, but it was the right decision for us. At that stage I was living with a blood disease with no cure, and no bone marrow donor, and an anticancer medication regime that barely keeps things under control. It was frightening. 

And this was 2020, right? So COVID.  

My second dose of the COVID vaccine really knocked me around, and I ended up back in hospital. It was such a scary time. I was having panic attacks. It’s that fear of death, you know? Staring down an illness when you have no cure. It’s awful. 

But now, thankfully, we’ve found a bone marrow donor: a man in Germany, so I feel much more at ease now, knowing that a transplant is scheduled and we’re moving forwards with treatment. That’s scheduled for December 12th. 

And how are your kids doing with it all, Emma? 

We’ve kept them protected from it as much as we can. They’re still so young. But they know something’s not right because I have to rest a lot in between caring for the family, running our business and doing all the jobs mums do most days. They’re starting to ask questions now, and we’ve just told them that Mummy’s blood isn’t working right and that soon I’ll go to the hospital and the doctors will help fix Mummy’s blood. We have a couple of picture books from the Leukemia Foundation that I’ve just got tucked away up on top of the cupboard for when I’m in hospital. My husband might just need something to help explain to the kids what’s going on, so we’ve got those prepared. 

And how are things going with you and your husband? I imagine all this really changes your relationship… 

Yes, it does. It puts a lot of stress on your relationship. It affects the whole family, not just the person with the disease. We’re trying hard to keep it all together. We run our own business, so it’s not like I can just take sick leave and have someone come in and fill my role for me, we have staff and clients depending on us. We’re in construction, so they’re big jobs with long timelines. We committed to quite a bit of work a while back, before all this really started, so we’re busy with work now, and I just can’t do what I used to in the business. And we’re looking at a period of time coming up to Sydney, where we just won’t be able to commit to as much because of my transplant. So, it’s all a bit of a juggle financially, planning and prepping everything to ensure the bills can be covered, as we will shutting down until I’m back on my feet as I will need a career full time once I’m out of hospital.  

Arrow has given us some vouchers for food and fuel, and that will really help us out when I’m in hospital. I’ve put them aside, too, like the books. I’m just building up a stockpile of resources, preparing for what’s coming. 

Is there anything else Arrow can do? What would be the most helpful thing for you, do you think? 

Oh, I’m just so lucky that Arrow and other support services exist! The social worker at the hospital recommended you, and I’m so grateful to have received the vouchers. I’ve got them put aside for when we really need them. I’m just trying to get everything in place as much as I can before I go in for the transplant. 

We don’t have a lot of family around that can assist physically with the kids, so I’m starting to gather up a support network through our friends. We’re usually so fiercely independent, and we don’t ever ask for help, but this is one time we will. You just can’t get through this alone!

That’s one thing I would say to anyone facing a serious illness: reach out for support and know that you’re not alone. Reach out to support services and work out who can be a support for your family. Who can make a meal for you? Who can help with school pick up? I’ve been getting things in place with the school, too. We’ve let the school counsellor know what’s happening so that if the kids need any extra support while I’m in hospital, it’s already there and in place. 

The other thing I’d say to people is that it’s OK to have days where you’re not OK. Some days are tough, and you just have to hunker down and do what you need to do to get through them. And that’s OK. 

And how are things for you today, Emma?  

Today’s not a great day. I’m feeling a bit emotional. But that’s OK. I’m learning through all this that there’s so much I don’t have to hold onto anymore. I’ve carried so much baggage around with me for such a long time, and I don’t need to. I’m working through a lot of stuff, healing and letting go, so that I can face this next bit of treatment with love and an open heart. 

And how lucky I am to have found a donor! It’s like a second chance at life. I’ve been feeling a bit like a sitting duck, but now that we have a donor and a transplant scheduled, I’m excited for the future! 

What are you most excited about? 

Having the opportunity at a second chance at life, nothing is guaranteed with this treatment, but we are staying focused on the positive. I am excited about travelling again, getting back into fitness training, doing all the things I love to do, not being confined at home and most of all having energy again and being pain free. I’m really looking forward to getting back to my life with my family & friends enjoying all the beauty it has to offer and start living again. 

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