URGENT - Frustration with Haematologist over Urgent Question

[Gaithersburg]

Please may I ask for urgent advice, as I am so upset, anxious and frustrated. I have just tried to speak to my haematologist and was told they are in clinic and had to insist that they leave an urgent message to call me back. The nurse, was fielding calls, was trying to answer my question and although I was not rude I had to insist that a message was left for a haematologist to call me asap. Here's what happened to me...

Sorry this is a long one.,,

On Saturday night my nose started bleeding and would not stop. Every time it slowed down and clotted and I moved, even slightly, it started gushing again and I was coughing up huge blood clots. (I have ET and take aspirin and Anagrelide). By Sunday morning I was so weak and my nose was still bleeding so after a call to 111, my husband took me to the local A&E on Sunday morning. The ENT Doctor said that I have burst a blood vessel and inserted a balloon into my nostril to stop the flow. She advised me to come back this afternoon to have it cauterised. Even before I left the carpark, I had bled through the balloon. I had to return to A&E where the ENT Doctor asked if I knew about Tranexmic Acid tablets and could I take 3. Obviously I had already explained about my MPN and said I took these when I had heavy periods but no more than 2 per day I was advised which was what I took. The bleeding has stopped but I now have a huge dilemma as yesterday I did not take my aspirin in the morning due to the heavy bleeding and then I took 2 Tranexamix Acid in the afternoon. The ENT Doctor wanted me to take more Tranexamix Acid today too but I am wary due to not taking my aspirin yesterday and do not know whether to take aspirin and or Tranexamix Acid again today. I have to be at the hospital at 3.30pm today.

I feel very alone and tearful that I cannot speak to anyone on my haematology team and I am asking you, my fellow patients, for advice please. I hope that I get a call back but I feel the nurse thought I was being unreasonable and was not going to rush my message through.

Thanks so much.

Lisa

[Mazcd Partner MPNVoice]

hello Lisa, what a horrible experience for you, very frightening for you. I am afraid we cannot advise you on what medication you should take, either the Tranexamic Acid or the aspirin, you really do need to be advised by a doctor about this, preferably your haematologist. It might be worth giving the haematology nurse another call, and explain that you are really anxious about what to do, and ask if either she/he is able to advise you on what you should and should not take. I hope you get the bleeding sorted out and that it stops. Best wishes, Maz

[Gaithersburg in reply to Mazcd]

Thanks Max - I appreciate it.. I have called again and got a message back from the doctor now which is a big relief.

[hunter5582]

Glad to hear you heard back from your hematologist. I must say I am a bit surprised that the ENT doc did not do a doc-to-doc consult immediately based on your situation. Most doctors know very little about MPNs and would not have the expertise to make good decisions in the absence of a consult with a MPN Specialist.

For what it is worth, I have discontinued aspirin for several weeks at a time when I was bleeding post-surgically. Something to note is that with thrombocytosis, you are also more prone to hemorrhage, particularly at higher platelet levels. I had a history of elevated bleeding/bruising when my platelet levels were 800 or higher. This is a well known issue for people with thrombocytosis.

Hope this all gets sorted out ASAP.

[Gaithersburg in reply to hunter5582]

Thank you so much Hunter. It's a relief to hear that you have stopped aspirin for quite a while. I will take your advice and ask the ENT Doctor to liaise with a Haematologist preferably with MPN knowledge when I have my appointment later.

[Ebot]

It would be good to know what your haem said to you when you finally spoke. Like Hunter I have stopped aspirin for a week before surgery. I also stopped aspirin while on Tranexamic Acid for three or four days at a time. Do hope you feel better soon.

[Gaithersburg]

Hello Ebot and thanks for your message. My Haematologist didn't call me back, I just got a "no to aspirin and yes to Tranexamix Acid" message from the nurse but with no indication on how long for! Anyway I went to the hospital and I did have my nose cauterorised which has stopped the bleeding thank goodness. However the new ENT Doctor, who I saw, said I should continue the Tranexamix Acid for a week which I told her I did not feel happy doing due to my ET. She said my blood levels were fine yesterday but she's not a Haematologist.Therefore I will take it again today and try to get some indication of how long I should take this and also when I should restart Aspirin from my Haematologist. Quite honestly I feel like I am being a nuisance when I call which I don't think I should do which is sad and certainly not the relationship I'd like with my Haematologist.

[Na56 in reply to Gaithersburg]

Hello and what a dreadful experience you have had! After taking aspirin for about 8 weeks I kept having nose bleeds and I rang the haematology nurse. She spoke to my haematologist and I was told to stop the aspirin. I also take hydroxycarbemide tablets. I’ll discuss the aspirin problem at my next appointment in a few weeks time but I’m assuming that aspirin is just not for me. I hope everything goes well for you. Irene

[Peachjoy]

Hi. I’ve just read your post, I don’t know what to suggest for best…but I recognize your distress, you are not alone. Sorry I can only send a virtual hug x

[hollymae]

I too had a severe nose bleed last November. I called the ambulance fairly soon after the onset. I am on riveroxiban and I knew it was serious straight away. It took 13hours to get it under control. I would advise anyone to get attention early.

[Gaithersburg]

Thank you to everyone who has replied - it does help. Yet again today I am still frustrated and sad as waited all day for a reply from my haematologist as to whether I should restart my aspirin or continue the coagulant and no reply. I called twice and just do not know what to do. The only message I received the first day when I first posted this note was no to aspirin and yes to Tranexamic acid but no timescales. I don't think I am being unreasonable and understand that the doctors are in clinic but please just look at my records and send me a message. At this moment I am managing my own healthcare which is very concerning to me. Obviously I don't want my bleeding to come back but must accept that I have been advised not to take Tranexamic acid for more than 3 days. Should I toss a coin?!

[hunter5582]

That is very frustrating. It seems rather negligent for the doc to not respond after you had a significant bleeding incident.

In your situation, I would call the hematology office and let them know that I would not restart the aspirin until they call to tell me to do so. That way the doctor knows what you are doing and would call if there was a significant concern. I would start calling twice a day first thing in the AM and them shortly before they close, until I got an answer. That presumes that you do not have access to a patient portal. Or access to a hematology nurse specialist. You might get a more rapid response to one of those options.

I would note that I have never had a problem getting a same-day answer from my hematology office. the nurses are terrific and will get an answer out of the doc if they cannot advise me. If your hematology office is that bad at timely answers, perhaps it is time for a new hematologist.

Hope you get it all sorted soon.

[Gaithersburg in reply to hunter5582]

Thanks once again, Hunter for your advice. I will do just that tomorrow. I called them first and last thing today but nothing and sadly we do not have a patient portal nor have I ever been allocated a nurse. One thing for sure is that this highlights how poor the situation is at this practice, should a patient actually need some urgent advice, and I am definitely going to change my haematologist after this as I have lost all faith in them.

[hunter5582 in reply to Gaithersburg]

Just in case you have not seen this, here is a list of patient-recommended hematologists with MPN expertise. mpnforum.com/list-hem./

[Gaithersburg]

Thank you, Hunter for the list of MPN Specialists - I will definitely change my haematologist after this. Anyway it worked what you recommended! I told the secretary that I am stopping my aspirin until I hear from a doctor and thinking of talking to PALS (patient liaison service) and I got a call back from a doctor at last. He said to stay off the Aspirin until Monday and only take the Tranexamix Acid if it starts bleeding again. He will call me Monday to see how I am. This is nice but last time I saw him I had to say how displeased I was as I'd had my bloods done in February, then got Covid and was unable to attend the appointment. I then fainted a few weeks later and I rang 10 times to find out what my levels were in case this was why I had fainted and no-one ever called me back on what my results were and I didn't know until I attended my next appointment 3 months later!

So all in all not a one- off and totally unacceptable but a huge thank you for being there and helping when I needed it - really appreciated.

Lisa