Second opinion

[Woodlandgarden]

Although my bloods were consistently up, and going up, my first haemotologist said he was very surprised at my BMB result of ET. He also told me he is an optimist, while putting me on daily asprin, a plan to watch & wait. At the outset of Covid in February 2020, he sent me of on my merry way while saying I will see you in 6/12 months time. This was just at the outset of the Covid pandemic reaching Ireland & our subseqent lock downs.

I haven't seen or spoken with him since that day!

Following my official diagnosis, my platelets continued to increase. I went through 18 months of frustrating & upsetting teleappointments with a series of interns, including one who knew absolutelt nothing about MPNs. I contacted the Haemotologists secretary on a number of occasions regarding my health concerns . She was rude, incredibly unempathetic and obstructive with regard to accessing any information, advice or appointments. The specialist nurse I was assigned to knew less than me about MPNs or ET!

Last July, following an A&E referral for Cardiology concerns including breathlessness and bad chest pains, I had a most upsetting face to face appointment with "a soon to be Consultant" (her words) in my local haemotology/ oncology department. I was informed by this same doctor( the soon to be consultant!) that my myriad of symtoms were in my head, nothing to do with ET, their MPN department and told me to go and get some counselling for myself. I left her office in tears.

It is important to note here that early in my diagnosis my daughters contacted a cancer support counselling service for me which I attended attended through out this period via phone . The counsellor was excellent and helped me come to terms with my diagnosis and to the changes to my quality of life due to my symptoms. However, and ironically, this very counsellor was one of the strongest encouragers, along with my daughters, of the need for me to get a second opinion regarding my symtoms their impact on my quality of life and appropriate treatment for same!

MY JOURNEY

My GP did not want to refer me for a second opinion without the haemotologist's agreement. She tried to contact him but he nor any of his team reverted to her or me at any stage with regard to this.

However, on foot of my A&E visit 8n July and due to Cardiology concerns my GP did refer me to a private cardiologist in Dublin for a cardiac assessment. During the assessment I was admitted as an emergency due to intial symtoms at the assessment . They carried out the full range of Cardiology tests & investigations. After a few days, I thankfully received their all clear from a Cardiology perspective.

The cardiologist, was equally perturbed as me regarding my inability to source a second opinion. He said I was totally entitled to seek a second opinion . After discussing the Cardiology test results with me, my blood results and symtoms he was more than happy to send a detailed referral for me to Dr Conneally 's MPN clinic in James Hospital and updated my GP also with regard to this.

Finally, I was successful. I had a referral to an MPN specilist & clinic for a second opinion

I received an appointment to see Dr Conneally in August 21. She carried out a very thorough consultation with me and ordered the full range of blood tests. She listened to everything I described about my symptoms and how much my quality of life was being affected by them on a day to day basis. She took all I said seriously and without judgment while also asking a number of very pertinent and relevant questions about my general health and history. In view of her assessment and my initial bloods prescribed hydrea for me.

Following on the range of blood tests she ordered my diagnosis was subsequently narrowed down to ET Jak2 positive ( my previous department had said I had no mutations). I had a second consultation with one of her team . I was fully informed of what my new diagnosis meant and the treatment required.

Most happily for me, I was admitted as a patient to this clinic and am now attending Dr Conneallys MPN clinic for my ongoing treatment.

At my intial consultation I was imprescribed 500mg hydrea daily. On a later consultation Dr Conneally subsequently upped this to 1000 mg three days a week & 500 mg for the other four days days. My platelets, as of last week are now down in the 200s 🙂😄🌟 . I need to remain on this dose for the foreseeable future to maintain my blood count at this level.

In comparison to this time last year I feel so much better 🤗

My symptoms, including the horrendous headaches and breathlessness have totally subsided. I have my ups & downs and still have fatigue. However, in reality this is just part of the course in general for us. I have learned to accept and manage the fatigue by simply taking each day as it comes and enjoying whatever and where ever the day brings me.

Everybody tells me I am looking fantastic 🙂. I respond by either saying thanks ," I am feeling good today"or alternativly "thanks not feeling so good, so just taking it easy today."

Dr Conneallys team have been wonderful. They listen to me while also giving me proactive and positive advice and information on what I can do about any health issues

My experience with this team secretary, interns, nurses, shos and consultant has been so refreshing & such a change from my previous experiences in my local oncology/haemotology department and team.

Almost two years down the road from my initial official diagnosis:

My recommendation is; should you feel uneasy or upset by the treatment you are currently receiving from your haemotology team (I felt both) persevere through whatever channels are available to you in seeking a referral for a second opinion with an MPN specialist.

MPN specialists understand what we are experiancing. They have the skills and knowledge to monitor our treatment appropriately ☘

[amhann]

Hello woodlandgarden - goodness that has been an upward struggle for you! - it is so demoralising to be treated in such arrogant and unwarranted fashion - it is I think 3/4 s of ‘the battle’ won when we can find a compassionate, knowledgeable team to take concerns seriously and help us to help ourselves. I am so pleased you are finally with a team you can be confident with (I have every intention of getting a referral if I feel things are escalating with my conditions/symptoms, but am ok for now - I am ET JAK2+ but with a rare lymphoma as added bonus)! Very best Anne-Marie.

[hunter5582]

Thank goodness your persistence paid off. Receiving care from a MPN Specialist is the only way to ensure receiving optimal MPN care. It is ALWAYS your right to seek a second opinion. Any doc that tries to impede this is violating your right as a patient to seek optimal care.

Unfortunately many doctors, including hematologists, do not know much about MPNs. This is a reality we all have to deal with. I have found it quite common to need to explain what PV is and what the broader implications of the JAK2 mutation are. However, the science of medicine is only half of the equation in finding a good doctor to treat MPNs or any other condition. The art of healing is equally important. The very best physicians are knowledgeable in the science of medicine and gifted in the art of healing. They are the providers we need to seek out.

Educated and assertive patients receive higher quality care. Uneducated and passive patients do not. It is a credit to your self-advocacy that you found the right provider and have found a treatment plan that suits you.

Wishing you continued success going forward.

[Mostew]

Well done Woodandgarden

To many in the medical profession don’t listen. It’s great to hear you have at last found compassionate care. I’ve been in tears to many times over the years . Makes me stronger and more determined …

Love your name !!!

Carolyn ..

[Cja1956]

Thank you for sharing your story. I’m sorry you had to go through all that, Unfortunately the lack of compassion and knowledge regarding MPNs is all too common. It sounds like you’re in a good place now, just having a diagnosis and finding the proper treatment. I wish you all the best.

[IrishSarah]

So thrilled to read this Eithne! I’d hoped you’d find your way to Dr.Conneally’s team and into good hands to get the treatment you deserve 💚

[mhos61]

Hi Woodlandgarden.

What a dreadful journey you have had to experience before you got to your ‘happy place.’ It makes me angry for you. Unfortunately, experiences like this are all to commonplace.

I really can’t understand your GPs reluctance to refer you for a second opinion without approval from your haematologist. Strange about your mutation status too!

Lucky for you that there has been a good outcome. You must feel a great sense of relief. Xx

[Foodies]

Hi woodland garden.So pleased that you have found the support you need. It is so reassuring to meet a Dr who understands and is prepared to listen to the patient.

Keep going, live each day as it comes!

[Jean24]

What a trial you have been on. It would have been so easy for you to give up on it all, but you carried on. So glad you are now receiving the correct care and medication you need. It's so annoying when people remark how well you are looking. I do think lots of people get that, unfortunately those people who say how well you are looking don't know what's happening inside your body. Or even spend a good length of time with you. So all the best for your future care. X

[Oscarsboy]

Well done you for being so persistent. I had to do something similar to get seen and it is sad really that you have to push so hard to get the treatment you need. Thank goodness you did and you are now moving forward. Great advice for others encountering the same issues.

[MaggieSylvie]

May the universe preserve us from these "soon to be consultants"! Three months after I got the lecture in front of a training member of staff, I saw my haematologist. When she saw my smiling face, she asked me what I had been told. Then she gave me the truth. I had to push for all the details, but finally got there, and am learning all the time. I am on aspirin for my high platelets (500-600) and epoietin injections for my low haemaglobin, so am being as well looked after as I can be. The epoietin has helped the breathlessness, and I've just started on pregabalin for something else, and I'm feeling much better. I didn' t realise how bad I had been feeling!

[Solyesh]

Congrats on getting to where you should be; sorry for the trials and thank you for sharing! Without a doubt MPN specialists make a difference! But even then, informed, assertive patients tend to get the best care as you have proven! My MPN specialist is amazing but also human and during our last appointment, I complained about the insomnia I am experiencing with Peg (thankfully one of the few side effects) and he said he had not heard of insomnia as a common side effect! I pulled out the medicine pamphlet and some info I had from here and other places to share with him. He said he would take a look and then reverted to me two days later, thanking me for taking the time to provide him with the info and letting me know that he also reviewed dozens of his patients/cases and did see in a number complaints about insomnia when using Peg. It just wasn't on his "radar".

[Threelions]

Thanks so much for sharing your story. Thankfully I’ve been under brilliant supervision at Guys Hospital. It is so important that we receive the right assistance from departments that are aware of MPNs and know how to treat them effectively. Your story shows how important it is for those who don’t feel they’re being looked after efficiently to seek an alternative viewpoint.

[EPguy]

Such aggravation. It's known that women are more often accused of "...my myriad of symptoms were in my head" as you say; ...and we're in the 21st century, so wrong.

In my case with HU, I had 1000/day and bloods went down too far after 4 months and I felt lousy. It's possible you can reduce your dose if the same happens to you. Sometimes the Dr likes to see these numbers way down in the early months of therapy, which may not always be best for our symptoms. You can ask your Dr about that if your numbers continue declining. But if all is stable, that's great.

[Fizzydog]

Thank you for sharing your journey with us all. Your courage and determination in fighting to get the treatment you deserve & need is an inspiration, especially when feeling so much fatigue with the symptoms. It’s horrendous to hear what a battle you have been through just to get the treatment you deserve and need. I live in Wales & have been so lucky the first haematologist I saw was fully knowledgeable about MPNs.

I hope the original haematology team have now learnt from your experience & have gained a better understanding of MPNs so they don’t treat others the same.