New Hospital new start

[JeniMac]

Hello all

Hope everyone is well

I wrote on here a few months ago about changing my Haemotoligist as felt I needed new eyes on my case.

So today I went for my first appointment and what can I say

Totally different experience listened to my concerns agreeing to how I was feeling was symptoms of my condition

Had a BMB as feels my ET may have progressed to MF due to symptoms I am showing

Really feel like someone is finally listening.

Onwards and upwards. 🤞😊

[hunter5582]

Very glad that you took action to arrange for higher quality care. The right care team makes all the difference.

All the best moving forward.

[JeniMac in reply to hunter5582]

Thanks Hunter. You are so helpful and knowledgeable. It was through you that I realised that I needed a positive outcome with this. Its hard enough having to cope with a condition without support and I rea lly feel I have done the right thingThanks again for all your support on here

[MPNBlog]

So glad you had a positive experience. Being listened to is so important. I hope the good care continues.

[Meatloaf9]

Glad you found a Dr that you are comfortable with and who listens to your concerns. Sounds very promising. May I ask what symptoms you are having that makes your new Dr think that you could possibly be progressing to MF. Progression is always in the back of our mind and I think we have various symptoms and wonder about progression. Best wishes to you always.

[JeniMac in reply to Meatloaf9]

Hi MeatloafI have lots of Bone pain, Hot flushes. Heart palpatations. Dizziness Brain fog and really bad Fatigue.

They seem to think this may be a progression also when I had my BMB they couldn't get any fluid. I should find out in 2 weeks so hopefully it's not the case and just other reasons for the change hope your well

[Mostew]

It’s so important to be listened to . We have enough to deal without the people advising us making us feel worse.

Hope your symptoms can be controlled

Well done for not just accepting care you had x

[JeniMac in reply to Mostew]

Thanks Hope your well

[Cja1956]

I’m glad you found someone who is listening to your concerns. I just had a BMB to see if my MF got worse. Luckily, it did not. I hope you have similar results and that your ET didn’t progress. Let us know.

[JeniMac in reply to Cja1956]

Thank you will do. Can I ask did you have any symptoms for your MF. I feel my condition is getting worse. Did you have any other condition before MFThanks again

[Cja1956 in reply to JeniMac]

Yes, I was diagnosed with ET jak 2 in 2008. It evolved into myelofibrosis a few years ago. I was feeling extremely fatigued with extreme brain fog and dizziness. My hematologist at the time didn’t think I progressed so I found a specialist and she did a bone marrow biopsy and said that I did progress to MF intermediate 1.

[JeniMac in reply to Cja1956]

Thank youI have had same symptoms for ages my old haemotoligist said there was nothing he could do. I did have a BMB done in 2009 which showed fibrotic changes then but he didn't seem concerned. I changed hospitals went for my first conseltation on Thursday and so pleased that they actually listened to me. I was given a BMB and was told my fluid in marrow was dry so would have to wait until results. All my symptoms push me towards MF as I have had ET since 2008. So just waiting for results. I will be gutted if it has progressed and something could have been done last year. Hope you are well

[Cja1956 in reply to JeniMac]

I know how you feel. My original hematologist didn’t believe me even though I was anemic and my platelets kept increasing. My specialist can’t really tell when I transitioned , but she thinks I may have even had prefibrotic MF in 2008. I had brought my original records with me to my initial visit with her in 2019. It’s so frustrating. I partly blame myself for not finding a specialist sooner.

[pj1963]

Hello JeniMac,

I'm just wondering how easy it was to change haematologist. Have you had to change hospital? I am seen by anyone from a team of haematologists at my local hospital in Scotland but would prefer to see the same person each time (which I'm told isn't possible).

[JeniMac in reply to pj1963]

Hi hope your well. I went to my GP and just said I felt I needed a change in haemotoligist.She ask why and I said I don't feel I am getting the continuous treatment and need a new approach to my condition ET she said she would refer me to a new hospital. It took about 6 weeks but as soon as I had my first conseltation on Thursday I knew I had done the right thing Good Luck and don't give up remember it is your health be positive and don't take no for a answer