After today's appointment I'm

I had my regular 8 weekly blood check today and all the results came back fine, Hb and Hct within 'normal' range. Which is excellent news for me as after Octobers venesection I felt like cr@p for 14 days as my BP had fallen dramatically (this didn't happen while I was in Day Case, but after I had arrived home) So no fault of the hospital.

I was dreading having to have a venesection today due to the not so good reaction in October... but honestly thought I would need one as my symptoms have been really bad for many weeks, causing loss of sleep. Chronic Itching, Acid Reflux, Bleeding gums, fatigue and unexplained bruising ~ I haven't had a full nights sleep in nearly a month and have felt totally wiped out.

I didn't see my Haematologist today as it was just a 'regular' blood check, so the specialist nurse I saw advised that I see my GP and ask for referral to Gastro and has brought my appointment to see my haematologist forward by one month.... January instead of February.

When I arrived home after the appointment I was pleased and relieved.... YAY!!! no venesection.

Now after it's too late to ask I'm beginning to think WHY another referral?....

I've had acid reflux for years..... way before my PRV diagnosis, and also had a stroke in 2012 before PRV diagnosis.

I know for definite that I am Jak2 positive and I had a stroke in 2012. I don't smoke, drink alcohol or only occasionally, weight within 'normal' range, walk every day as I don't drive, eat my 5 or 10 a day. And even though I am self employed I still try to de-stress everyday, and my teeth and gums are fine as I had a dental check last month (no treatment required)

So....Why do they recommend Gastro and why bring my appointment with my Haematologist forward? When my FBC was within 'normal' range.

My PRV is currently managed by Aspirin and Venesection, other than that I take Verapamil for SVT (supraventricular tachycardia) diagnosed before PRV and Lansoprazole for the reflux. I've had so many investigations I'm wondering what more they can investigate... needles, cameras (in, down and up), MRI tubes x 3, bloods every month. :/ My head is now just thinking 'Gastro??' What next...??

At the same time I'm also relieved and pleased that further investigations have been called for, hence the heading.

Worry wart me....

6 Replies

  • Hi, sorry you are going through so much. I know what you mean when you say what next??? If I were you I would ring the specialist nurse and explain how you are feeling and ask her to explain why the referral and change of appointment to January. She may put your mind at rest.

    Karen x

  • Hi sorry to hear you are having such a rotten time. As Karen has said please phone and ask for an explanation. Worrying about it will affect your health and emotional wellbeing and you want to enjoy Christmas. Take care, let us know how you get on. Aime xx😺

  • I think they are probably just trying to annul your discomfort in any way they can. They did the same for me when I was plagued with burning reflux which I had for some time before my pv diagnosis. My haematologist said to me that her job is to keep my blood right and other problems I must ask my GP and she referred me for GI investigation. It turned out I had ulcers and hiatus hernia which is quite well-controlled but the balance can be upset quite easily. For instance, after a longish flight or a rare glass of wine. Two night ago after doing both I had a horrendous reflux bout which ended with me vomiting. Fine again now though. We get so used to feeling no one is listening to us that when they do and attempt to ease our pain, sometimes we get a fright. Your haematologist obviously cares. Isn't that lovely. Hoping u feel better for it soon.x

  • Hi Kari, sounds like youre feeling rubbish at the mo, sorry to hear it. Did you call your nurse? X

  • Thank you everyone. Sorry for the late reply ~ I was working until quite late last night and felt wiped out after I had finished.

    I spoke to the Nurse and she reassured me. She wants me to be referred to Gastro as they have no record of any of my previous Endoscopies (they were performed at another hospital, in another Country) And as I am already taking Lansoprazole and still suffering with Acid Reflux she thinks it's best to get it checked.

    The Clinic appointment has been brought forward as there appears to be a pattern developing with my bloods. I was under 0.45 on Monday but she seems to think I'll be ready for a venesection in January and doesn't want me to wait until February.

    I've stopped worrying now :)

  • I have reflux too, apparently caused by aspirin. i take the coated aspirin now and follow all the reflux guidance, and am so much better. I have not had venesection for 7 months and my hematocrit is stable at 40-41%. I also take Hydrea. So, be strict with yourself about the reflux guidlines. My hematologist is pleased with my progress. Oh, and I take Pantoprazole 2x20mg daily (am/pm) and Gaviscon as necessary.

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