Frustrated: So as I wrote previously I am changing... - MPN Voice

MPN Voice

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Frustrated

JeniMac profile image

So as I wrote previously I am changing Haemotoligist some are saying why after all these years well let's tell you my last conversation with haematology nurse not haemotoligist to busy

N Your bloods are a little up

M what is up

N Your platelets

N How you feeling

M Fatigue, bone pain, brain fog

N OK if you still feel like this go see your GP as it won't be your ET Take Care

GP Have you spoke to your Haemotoligist about your symptoms

GRRR

41 Replies

Yes I can empathize with this. I have also changed consultants. Good luck.

Oh, JeniMac! I’m SORRY to hear that!! You are RIGHT to change providers. It’s SO FRUSTRATING, isn’t it!!

I’ve got a similar situation here, in California. My Hematologist Oncologist Physician is GREAT and helpful, but VERY busy and it was hard to get appointments with him. His office kept scheduling me with his P.A. (Physician Assistant). She talked as though my newly diagnosed case of ET/CALR was really NOTHING to worry about and dismissed symptoms I had reported to her (fatigue, aching, ocular migraines, constantly ringing ears, history of extraordinarily heavy periods, prior borderline Von Willebrands diagnosis, recent huge weekly jumps in platelet levels (900s to 1200s to 1470), etc. saying they’re either nothing to worry about or are unrelated. Since March, she has given me so much information that directly conflicts with what my Physician has told me that I refuse to see her again, even if it means waiting a little to get an appointment! I did let the Physician know she was giving conflicting information and that was adding to anxiety over my health. I ended up having a major GI hemorrhage a couple months ago after a minor procedure. I will no longer let anyone be dismissive of my issues.

You’re doing the right thing! You deserve much better treatment, too, JeniMac!

GrammyG

JeniMac profile image
JeniMac in reply to GrammyG

Thank you hope you get the treatment you deserve xx

Wyebird profile image
Wyebird in reply to GrammyG

Does that mean that your meds were not adjusted when you platelets jumped?

JeniMac profile image
JeniMac in reply to Wyebird

No they just keep me on same dose 2000mg hu I'm sure it's not working as been on this for 13 years

hunter5582 profile image
hunter5582 in reply to JeniMac

That seems like a rather high dose of HU to have so little effect. Perhaps it is time for a new plan.

JeniMac profile image
JeniMac in reply to hunter5582

Yeah my haemotoligist is not into changes that's why it's my time to change

hunter5582 profile image
hunter5582 in reply to JeniMac

Definitely time for a change. Here is the list jut in case you have not seen it recently.mpnforum.com/list-hem./

Wyebird profile image
Wyebird in reply to JeniMac

On my word!!! Time to get a second opinion!

JeniMac profile image
JeniMac in reply to Wyebird

Definitely

I wish you well with your search for a replacement haematologist. It’s not easy. I too have been trying to change my haematologist. I did manage to see an mpn specialist but she would only see me once for a second opinion, not take me on as her patient. Hope you find a good one really soon 🙏🏻🤞

JeniMac profile image
JeniMac in reply to Amethist

Thanks I can't find a Mpn specialist either but have been told that the new haemotoligist is mote thorough so we will have to see hope you get sorted

Ggggrrrrrrr

Hi JeniMacI think that your GP and 'specialists' are acting appallingly. Unfortunately, this seems to be the trend at the moment, to push people from pillar to post, and not actually take any action.

The questions you were asked were, I would say, stereotypical of all appointments with haemo. I too find it so frustrating, there must be more that can be done, than just leaving you on the same medication for so long. Unfortunately, once diagnosed and told in my case with MF that there is no light at the end of the tunnel, that's it. Every two months I get to speak to someone different, who never answers any questions I have, so I empathise with you on all sides.

Please don't give in and persist in finding someone who can make a sensible suggestion as to your further treatment.

Best wishes, and let us all know what happens next?

Thank you it gets so annoying. I hope you get the support and answers you want I'm really hoping the new haemotoligist is going to be more forthcoming and listen to me.

Dear JeniMac, I was fascinated to learn how your experience mirrors my own. "Fatigue, bone pain, brain fog," are, it seems, very common features of our condition/treatment, yet some of the highly trained specialists seem unaware of this or prefer not to acknowledge it. The telephone consultations are usually just as perfunctory as you describe. DancingElephant's comment also struck a chord: "The questions you were asked were, I would say, stereotypical of all appointments with haemo."

I wish you well, as it is not always easy to tackle problems such as this, where the power relationship is so unbalanced.

JeniMac profile image
JeniMac in reply to Peter18

Thanks they make you feel like its in your head. Sometimes I feel like just coming of my hu and see how I feel.

I had an inconsistent and a frustrating time at one hospital where every consultant came up with something different. In the end I asked for the head consultant to write a treatment plan we agreed on and put it on my file. That worked pretty well for a while but then the head consultant started to go against the treatment plan he wrote with no explanation so I changed hospitals to Guys and they have been great. Shop around and also ask for a treatment plan.

JeniMac profile image
JeniMac in reply to Jenny_F

I really hope so hope you are well

What is wrong with the medical profession these days? I’m so sorry you are going through this. I’ve been fortunate to have caring doctors, but the problem is that there are still so many that are ignorant about our condition. I changed doctors after 10 years because I felt he had reached his level of knowledge about MPNs. I found out from my new doctor that I had progressed from Et to MF intermediate 1. I hope you find a capable and caring doctor soon.

JeniMac profile image
JeniMac in reply to Cja1956

It's really hard as I think haemotoligists are OK generally but don't specialise in our conditions which means things go amiss. They seem more text book. Hope you are well.

If that conversation was not so appalling it could be a comedy sketch. More like a comedy of errors. That is so ridiculous that words fail. As others have indicated, this sort of thing is all too common I would very definitely do whatever was necessary to get to see someone else who actually knows something about MPNs.

Hope you find a decent provider ASAP.

HelloThis is exactly the same for me. I have also asked my GP to refer me to somewhere else. My haematologist is based at Huddersfield UK and must say the nurse I have been allocated has the same to reply to me on any of my concerns. “It’s not your ET” or the new one is “ well it can’t be your medication you have been on it too long “ !!

My GP has agreed with my request.

Yvonne

JeniMac profile image
JeniMac in reply to YBSx

It's a nightmare I'm really hoping I will get some answers hope you get sorted

hunter5582 profile image
hunter5582 in reply to JeniMac

The good news is that the nightmare can turn to a better dream with the right providers. I have a MPN Specialist at Johns Hopkins who is terrific. Very responsive and answers questions promptly when I send a note in the patient portal. My regular hematologist who handles my ongoing care is a wonderful physician who demonstrates what it is to be a healer. Both docs listen to me and are responsive to my concerns. Both docs respect me as an individual and genuinely care about me as a patient. Both docs respect my right to make my own treatment decisions and provide me the information I need to make good decisions.

This is what everyone deserves. We have enough to deal with in managing a MPN. We should not need to be combatting ignorance nor unresponsive systems of care. When that happens, it is time for a change in where we seek care. This is both our right and our responsibility. Inadequate care can only continue when it is tolerated.

Hoping for better treatment for all who are engaged in a struggle with inadequate care. All of the best to all of you all.

JeniMac profile image
JeniMac in reply to hunter5582

In uk we are not lucky enough to have a patient portal. It's hard to get to see a GP and hospital appointments seem to always be rushed

hunter5582 profile image
hunter5582 in reply to JeniMac

We see similar problems in some healthcare systems here in the States too. Access to quality care is often driven by private insurance and the quality of the insurance you have.

Something I really do not understand is why patient portals are not uniformly in place across the entire NHS (or any other system). Access to your own record is so easy to provide and promotes effective care management. This should be considered a basic standard of care in any healthcare system. Some docs are not responsive to messages in these portals, but being able to look up your own labs and reports is so helpful that it makes no sense not to provide access.

Perhaps advocacy on this issue is in order. Meanwhile, I hope your new MPN provider will do a better job.

I feel your pain♥️I truly do! Good luck with getting someone who will listen properly and help you. Keep us posted.

JeniMac profile image
JeniMac in reply to IrishHiker

Thanks ❤️

Hi Jeni,Much the same with my heamatologist. He’s retiring but wanted to stay on at the hospital and the hospital said no, so he couldn’t care less. Asked if I was ok and pretty much the same as yours, listened and then said, well you will see someone different next time. Bye!

What an utter waste of space some of them are.

I have had enough, so have stopped all my meds except for a baby aspirin and a multi-vitamin pill. I now know that the meds were responsible for all my horrible symptoms.

I perhaps won’t live as long, but at least my quality of life has improved no end.

I’m sure a lot of people think i’m crazy, but I was utterly miserable and that is no way to live.

Good luck with your search for a new beam Jeni.

Be well and happy.

Hugs,

hunter5582 profile image
hunter5582 in reply to Mardigras

I certainly do not think you are crazy. That actually sounds like a rational decision based on your treatment priorities. Some of us cannot tolerate some of the meds used to treat MPNs. We are all different in what we can benefit from and tolerate. I could not tolerate hydroxyurea. i had adverse effects even at low doses. I refused to keep taking it. Tried phlebotomy-only to treat the PV, but after a while the iron deficiency was really a problem. I am now on Pegasys - 45mcg/week. What a difference! All benefits - no adverse effects.

Whatever treatment approach you choose all the best with it.

Mardigras profile image
Mardigras in reply to hunter5582

Hi Hunter,Well done you for holding out for a treatment that suits you. I’m so pleased you are doing well on it and wish you all the luck in the world.

I stopped all my meds on 31st August after my hematologist’s appointment. I was at my wits end. Hydroxyurea, Simvastatin, Lisinopril for blood pressure.

I had no energy, silent migraines, heart palpitations, breathlessness, sickness, hair loss and pains in my legs and joints. I felt 100 years old.

In less than three weeks, I am brisk walking 45 minutes a day. Eating really healthily and feeling really great. My blood pressure is more or less the same and I will find out about my platelets at the next hospital appointment. So fingers crossed eh!

Thanks for your message Hunter it was really appreciated.

Be well and happy,

Hugs.

JeniMac profile image
JeniMac in reply to Mardigras

It's a lottery who you get I'm hoping my new haemotoligist is better will let you know take care you need to do what's best for you xx

Mardigras profile image
Mardigras in reply to JeniMac

I really hope you get a good haematologist this time Jeni and start feeling cared for. Good luck.

JeniMac profile image
JeniMac in reply to Mardigras

I hope you get what you need if you ever want to chat I'm here OK

Thank you Jeni, the same goes for you.Keeping everything crossed for you.

I know exactly how you feel, Jenimac. My way round these type of answers is to take my notebook and go through the various results one by one eg platelet count, white cell count including neurophylls, haemoglobin. Because I keep a note each time I question any change, I have no clinical nurse but have now been able to see a haematologist who does know a bit about MPNs. I have no MPN specialist either so really appreciate being able to join in the seminars that have been running from Guys over this difficult time. That way I can listen to the most up to date information as well as join in with a group discussion with others who have PMF like myself. Yes, it is hard, but you just keep on asking questions and very best wishes. x

JeniMac profile image
JeniMac in reply to Mujer

Thank you. I have had over 13 years of this at first I managed well working full time, but over last few years I have felt a deteriation and getting no answers so onwards and upwards. Great idea about taking notes I will take that on boardTake Care

I am waiting for a GP appointment as the same thing was said to me at the hospital, I said I had bone pain and fatigue but was told it was not relative to my PV condition so will see what GP says, am not feeling hopeful!

JeniMac profile image
JeniMac in reply to ktd1955

Same as me. My doctor wasn't helpful so I asked to be referred to a new haemotoligist at a new hospital she agreed and I have My first conseltation on 30th so hope it's better than lastTake Care

Hurrah for the new hematologist. Hopefully the new doc is a MPN Specialist like the docs on this list mpnforum.com/list-hem./ .

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