Hitting my head against a brick wall was painful but I broke through

[jillydabrat]

Went to see my haemo, Dr Marianna David, at James Cook Hospital today. My appointment was brought forward by my specialist nurse because she couldn't answer any of my questions regarding PV, she also admitted she hadn't a clue why I was so breathless. I sat for two hours waiting to see Dr David, only to be called in the consulting room by one of her registrars. Unbelievably, he couldn't tell me why or how to manage the symptoms I am experiencing such as the breathlessness, dizziness, itchy skin, confusion, painful intimacy.........absolutely nothing. He tried to tell me that none of the above were associated with PRV. Thankfully I had printed off the "What are the signs and symptoms of polychemia vera?" from the National Heart, Lung and Blood Institute. I gave him the printout, which listed all of the aforementioned symptoms and he read it but still insisted that what I was experiencing might be due to my other medication rather than the PV.

I was pretty exasperated by this time and I told him I was fed up of getting conflicting information from everybody I had seen, from my GP to my Haematologist. I told him I have visited my new GP for a referral to Professor O'Brien at the Freeman Hospital but my GP couldn't justify a referral because my blood readings were within normal range so, according to my GP, "at the moment you don't actually have PRV?????" Got to admit the registrar shook his head at that comment.

I told him about how MDVoice had provided me with more information than any health professional I had seen and that, through this site, I had been told about Dr Diane Plews, a specialist in red blood cell abnormalities, who was based at James Cook and I wanted to see her for definitive answers regarding my condition. He had already tried to tell me that PRV was not a cancer! I think when I told him that according to the World Health Organization, it was classed as a cancer and that also it is known as a progressive illness he realised I wasn't some sap who would listen to any spew and be expected not to question it.

Anyway, to stop rambling, I will be seeing Dr Plews in 3 weeks. I actually think I was going mad with all the conflicting information. I was so pleased when I read all the posts on here to realise I was actually normal with my symptoms. All I can hope now is that Dr Plews will listen and explain.

I think we need t-shirts printing saying "I'm not lazy, drunk or senile...I have an MPD"

[Tinkerbell13]

Well well done for persevering and looks at long last as if you are going to see just the right person. Please let us know how you get on. As ever, very best wishes, Tinkerbell13 (a big fan!)

[Jawas]

Hi Jilly,

Your experiences are not uncommon for MPN patients as they are rare conditions. I wish you luck with Dr. Plews.

It may be that you are suffering from inadequate hydration. Please see

mpdvoice.org.uk/wp-content/...

Look at Improvement in Symptoms (Week 32)

Aim for 2-3 litres of water per day.

Videos available here

patientpower.info/organizat...

All the best,

JAWAS

[Val_P]

Well done Jilly. I feel your frustration and would love one of those t-shirts too xxx

[clematis26]

I think our posts should be required daily reading by Haematologists of all grades and the CNSs ..... get all the information you can between now and your appt - thinking of you, Sue

[Janet123]

Dear Jilly,

I do know exactly how you feel. The hemotoligist tells me to talk to my GP and vice versa. So we have to research everything ourselves to prove what we really have going on.

My husband, family and hemotoligist have already told me it's not cancer. So how do you real wrap your head around that? ?

Also A friend of the family has ET. She is 73 years old and is taking hydrea and her doctor never did not tell her that MPN'S were cancer, nor that Hydroxydrea was chemo. She was dismayed when I mentioned this, so I backed off because I did not want to upset her.

Try pharmaceutical grade mineral oil for the itchy skin. It has helped me and even though I am not itching now I still use it several times a week as a precaution. It hurt so bad and I don't want it back.

I saw a hemotoligist for a 2nd opinion about a year ago, and all my symptoms she said were menopausal. Nothing to do with ET. So sometimes everyone thinks we are overreacting, but we know our own bodies and what is normal and what is not. Menopause was about 15 years ago for me.

I hope and pray that your next appointment will be a better experience for you and you find a good fit with a doctor who really listens.

Blessings, Janet

[jillydabrat in reply to Janet123]

Hi Janet, thanks so much to you and everyone else who have responded to my post. MPN's ARE blood cancer as defined by WHO (World Health Organisation in 2011 I believe). Any condition that involves the over production of neoplasms, be it red blood cells or white is now considered a cancer. This is going to sound strange but unfortunately, because we don' t have the more "popular" leukaemia, then GP's and even Haemo's don't want to recognise it as such but tough. I would love my health professionals to walk a week in our shoes to see what we have to deal with. So, if you are told again that you do not have a blood cancer you tell them they are talking through their arse and tell them to look it up with WHO. I am a fighter as you can tell and I don't take no for an answer from people you expect to know more. Good luck with your own fight luv xx

[Shelly1960]

Well done jilly and look forward to your future posts as they progress

[Aime]

Hi Jilly, so glad you have reached your goal, well done for sticking to you guns! Love the idea of a t shirt - Maz what do you think? Kindest regards Aime xx😺

[Polly-PV]

Good on ya Jilly-this is exactly what I was advocating a couple of months ago, being assertive about symptoms. Nobody knows their own body like the owner and, for me, it's only been through pushing have I had numerous tests; bloods, scans etc to pin down the cause of sleeping for England! Not there yet but taking the Vit D (as suggested by a haem at Poole Hospital) I feel has really helped.

As for MPNs being categorised as cancer, they are now recognised as such and that's why we very special folk qualify for a prescription cost exemption card. It saves me a fortune as HU & Clopidogrel are not my only regular meds.

It's people like you Jilly, who won't take 'no' for an answer, who ultimately re-educate the professionals or at least prompt them to think outside the box. They then have to have a re-think if you don't accept what they say & challenge stuff. You know you and what you're experiencing. Much love, Poll X

[Hughes-Comrade]

Jillydabrat:

How was your cbc specifically your HCT aka hematocrit? My wife and two kids have polycythemia, so familial polycythemia. It is a form of leukemia however my wife's original specialist told us to think of it as treating high blood pressure; as long as we keep it under control then no worries. Here in the USA my wife's magic number is keeping her HCT under 46. She's never had the itching problems, but my son has. I hear to avoid hot showers or baths for the itching. You might also try a different laundry soap for clothes and sheets just in case that has caused some of it for you. Sending you healing wishes!

I also have a hunch that a good daily fish oil can reduce the frequency of phlebotomies.

My daughter swears that good hard workouts reduce her treatment frequency.

No medical training here...

[jillydabrat in reply to Hughes-Comrade]

Hi Hughes, my HCT is now down to 39 where it was 65. The itching is not too bad, don't itch all the time but when it starts I could claw my skin off and, strangely, it's not when I have had a shower! You can guarantee that my neck will start itching while we are out and I end up with huge red welts across my neck. I am sure if anybody saw my my back they would think I was into something kinky lol. Off to my phlebotomist for inr blood test now and its such a beautiful day that I think a good walk to the hospital is on the cards. Best wishes, dabrat