My name is Frank Bailey and I have secondary myelofibrosis (MF).
My MPN story is a bit complicated due to moving between New Zealand and Australia over the years. I moved to Australia in 1980 and was granted Australian citizenship in 1983. However, I left Australia in 2013 for work, and to spend time with my ailing mother. It was back in NZ that I was diagnosed with polycythemia vera (PV). This is my story.
Diagnosis
I was diagnosed with PV in 2016. That diagnosis came about after I attended a medical centre with a severe headache. At the triage stage I was found to have extremely high blood pressure and so was taken to Waikato hospital’s Emergency Department (ED). While waiting, my headache became excruciating and other patients became concerned as I was sweating profusely. My face was changing to an extremely reddish colour and I found that even passing urine was very painful. And my urine contained several small blood clots as well as copious amounts of blood.
I flagged down a passing nurse and she agreed that this was not normal. Fortunately, I was triaged into a higher category and bumped up the waiting list. The ED doctors ordered heaps of blood tests, Xrays and an ECG. I was admitted overnight and the next morning I was seen by a cardiologist who advised that heart wise I was good. More tests and scans followed as well as the indignity of a urine catheter as I continued to pass more blood clots in my urine. A few other doctors examined me and were just as puzzled as the cardiologist. On day 3, I was seen by a haematologist who arranged for more diagnostic blood tests. She was very experienced, had trained in Glasgow Scotland and had been part of a research team working on PV and the Jak2 mutation. She was able to confirm through my blood tests that I had PV and the Jak2 mutation. My haematocrit (HCT) level was close to .60.
Initial treatments
So once diagnosed, I had 4 phlebotomies over the next three days. On the first day, I had two phlebotomies done within ten hours! I had a catheter and fortunately a drip. Once I was stabilised, the haematologist prescribed hydroxyurea (HU) and I was discharged from that hospital a fortnight after being admitted.
Ongoing care
In New Zealand
After the discharge, I had monthly blood tests and monthly phlebotomies to keep my HCT below .45. I also had three monthly haematology appointments until after I left NZ to return to Australia in 2018 as my two sons and a daughter and grandchildren live in Western Australia (WA).
In Australia
Back in Perth from 2018 I was able to obtain a short and uncomplicated referral to a haematologist at Royal Perth Hospital and under whose care I remained until I left Perth for a road trip to Queensland in August 2020.
I arrived in Queensland near Toowoomba in August 2020 and obtained another uncomplicated referral to a haematologist at the Toowoomba base hospital where my care – blood tests and phlebotomies -were done and HU doses were altered as required. I then left for the Cooloola coast in February 2021.
So to recap, throughout the period from being diagnosed in 2016 until leaving Toowoomba base hospital in February 2021 (about 4 and half years), I had been having regular monthly blood tests and phlebotomies. I can recall that some stretched to two months and on one occasion 4 months.
The real drama stated for me in 2021 when my mum’s health and wellbeing started to decline and I prepared to go back to NZ to spend quality time with her and to share the load and responsibilities with my sister. This was the tail end of covid times and still causing travel restrictions.
Covid restrictions, their implications and my ongoing care
I booked a flight from Brisbane to Auckland, organised a room with one of the NZ quarantine establishments, and arranged for my sister to collect my dog Lucy, a Jack Russell, from the airport. Lucy had been my constant companion since 2015 and dogs were not subject to any covid quarantine.
A week before I was due to fly out. I was informed that as I am an Australian citizen I wasn’t allowed to leave Australia in case I brought covid virus back when I returned. This was even though I’d stated I’d stay away for two years. So Lucy had to live with my sister in NZ and I moved from the Toowoomba area up to the Cooloola coast without Lucy.
My GP on the Cooloola Coast sent off a referral to the Queensland Health Service on the Sunshine coast. The referral was asking for me to be seen by one of the regular visiting haematologists to Gympie hospital. However, in their wisdom, the people in charge of making decisions decided that I was not eligible to see a haematologist. So under the care of my GP, I still had my monthly blood tests. As my HCT was slowly creeping up, my GP organised for a phlebotomy on two separate occasions. But both attempts had to be aborted all together. The first one could only get 20mls and there were no experienced phlebotomists available in that area. And neither of the practice nurses had been trained to do phlebotomies.
I was eventually allowed to leave Australia in mid April 2021 when borders opened again for Australians to leave the country. Two weeks of isolation in quarantine in NZ followed and, after Anzac day 2021, I was allowed to live normally in NZ.
I was accepted as a new patient at a local medical practice and had a consult with the GP. This was a one year gap between blood tests, and it turns out that between leaving Toowoomba and my first phlebotomy in NZ, my HCT had gone up to .52.
However, the decision was made by the GP not to refer me to a haematologist but rather to maintain my HU medication and continue to have monthly bloods to monitor HCT. And if my bloods exceeded .45, I would be contacted to go to a private pathology lab to have a phlebotomy.
All was well with this system until my HCT levels seemed to level out and if they went up to .47 the phlebotomy was deferred to see what the next month’s HCT was. The length of time between my phlebotomies was getting longer but I was starting to feel not quite right. I ended up insisting on being referred to a haematologist. I was, but I only had three phone consultations from April 2022 until Jan 2023 when I had my first face to face consultation since leaving Toowoomba in 2021, a two year gap.
As a result, I had three face to face haematology consults over the next three months. This led to changes to my HU doses and one phlebotomy during that time. On the face of it, everything seemed to be sorting itself out but… one thing leads to another.
A myelofibrosis diagnosis
By February 2024 my haematologist referred me to have a bone marrow biopsy (BMB) due to changes to my regular blood test results. At my consult on 27 March 2024, after the BMB, I was informed that the PV had progressed to secondary myelofibrosis (MF). That was nine years from my PV diagnosis.
Medication changes and life changes
I was then taken off HU for two reasons. Firstly, because I had problems with ulcer type sores on my lower legs (some taking 12 months to heal). I was put onto an interim daily dose of busulfan before going onto Pegasys interferon in November 2024. My Pegasys dose was 45mcg once a week for the first five weeks. Then it was increased to 90mcg weekly and, for the next few weeks, it was be a decision as to whether it stayed at 90mcg or would go up.
But then on 1 March 2025, my best mate Lucy, my Jack Russell since 2015 had to be euthanized due to a misadventure. Then my mum also passed away on the 6 April 2025 after a long illness and disease. I am so pleased I was able to stay with my mum until the end and it was good to have also been there for my sister. Apart from my sister, there was nothing left for me in NZ. So, in May 2025, I came back to Perth to be closer to my daughter, two sons and 9 grandchildren, three of whom were born while I was away in NZ on that last trip!
Before I came back to Australia I also came off the Pegasys. After the death of my dog and then watching mum quickly fade and waiting in NZ until she had passed away on 6 April, I think my haematologist was a bit concerned about me. So I don’t think she wanted to risk Pegasys aggravating anything in case it was depression. She had no hesitation taking me off Pegasys and restarting the HU. At the time there were also severe Pegasys supply issues and in addition, in my case, refrigeration and storage issues.
In her notes for the transfer back to an Australian haematologist, she mentioned that I might be eligible for Jakavi but she also mentioned that I’d been through a tough time losing my dog and then my mum in a very short period.
After arriving back in Perth this time, it wasn’t as smooth regarding referrals seeing a haematologist as last time. The same GP I was under before I left Australia, sent a referral to the central referral service a week after I arrived back in Australia. By mid June 2025, I started to get anxious as my HU was close to running out and I’d been informed that a specialist had to prescribe the original prescription for HU.
So, even after a follow up phone call to the central referral service, I was told that no decision would be made for several weeks – long after my HU had run out. A lot of people don’t understand where MPN patients are at. As a result of that conversation, I took myself to the RPH Emergency Department to see if they could arrange for a haematologist to prescribe HU for me. I underwent a full raft of bloods, xrays ultrasounds and was admitted overnight for observation. Next morning in mid June during ward rounds, I was seen by a Professor and a haematologist. I was immediately discharged with my discharge management plan to have a consult with the same haematologist that was looking after me before I left Perth in 2020.
Since that first consultation in early June after arriving back in Perth, I’ve kept up with monthly bloods, another raft of CT scans and on 14 August I had my second BMB and samples were taken from the other hip and all confirmed the NZ results that PV had progressed to secondary MF. As a consequence, it was decided that I met the criteria to be prescribed Jakavi 20mg twice daily.
Now
The Jakavi regime started at the end of August this year (2025). I’ve just finished nine weeks and I have had one blood test followed by a phlebotomy. During that time, I also had a spleen ultrasound and I’m awaiting those results. Coming up to the ten week mark and the next blood test and haematology appointment, I do feel a lot better. Although there are a few other issues that I’m dealing with as well. One of those issues is possibly related to PV and MF – shortness of breath at times. But I haven’t had a smoke for 15-20 years and I’ve had respiratory tests done and very disappointingly, am classed as a smoker.
Despite this, in terms of my MF, it looks like things for me may be stabilising.
