Last week I took myself off for my INR blood tests because I am on life-long Warfarin because of 3 DVT's. Suddenly, along the way, I became really unwell. I didn't want to open my eyes, I just wanted to slump forward and I felt really sick. I got to the hospital and asked my nurse for a drink of water. I was very shaky. My nurse was really concerned but I just wanted to get home. I called my hubby to tell him I had had a funny turn and if I wasn't home in half an hour to come looking for me. On the way home I had to stop and be sick in the hospital hedgerow and,once again, had to battle to keep my eyes open. I got home just in time to run to the bathroom to be violently ill. My hubby made me a cup of tea and I was sick again. I sat on the sofa and my hubby videod the rest on his iPad to show me how awful I looked. My eyes were rolling in my head and I was slurring so badly he couldn't understand me. If I had downed a bottle of vodka I couldn't have looked more drunk. Hubby was desperate to phone an ambulance but, and I know this sounds bizarre, I just felt too ill to go anywhere. Now if I get tired, which is a lot of the time with PV, he is panicking that it's going to happen again. I did go to the GP and he is talking mini stroke. Hubby was given strict instructions to phone 999 should it ever happen again. I feel pretty devastated that this could have happened on top of everything else.
I think I need a kick up the bum: Last week I took... - MPN Voice
I think I need a kick up the bum
Hi
I dont think you need a kick up the bum, it sounds awful.
Honestly i would bypass the GP and go see your consultant asap. I know you dont feel well but i really thing you should force yourself.
It could be the effects of treatment, but you really should get checked over by people who understand your condition.
Hope you feel better soon
Paul
Hi what a horrible thing to happen hope u feeling better. You were at a hospital they should have seen how unwell you were are you having more tests . I have PV and get very tired hope you can rest it must have worried you but I have learned from this site keep asking questions and taking the pills best wishes Poppy 6060
Sorry Jill you had such a frightening experience and I can appreciate just wanting to get home and not go anywhere. As others mentioned do chat it over with your treating consultant who can tie it all in what you have going on with your MPN and give some assistance it would be sensible to get checked out. Here's hoping a one off. All the best girl the other Jill X
Oh you poor thing, no why would you need a kick up the bum! you look after yourself ,and take you medication reguarly . maybe have a word with your consultant you see for your pv , so sorry to hear you been going through so much .i pray it doesnt happen again , take care Holly x
Hi Jill, that sounds awful and scary! Truly hope you get checked out asap as this kind of experience is very good at knocking our confidence in fear of it happening again! Really hope it turns out to be a pesky virus running through you, not to be repeated. Take good care and hope you feel better soon, Christine x
Jilly hope you feel better now. We do get these awful feelings,do you think you were over tired.?
Oh dear, poor you, you really have suffered. Understand that, if on warfarin and vomit, it is essential to get proper checkups, as, apart from anything, the actual vomiting will negate the effects of the warfarin, so that could be a bit serious, too. Hope you can be really sorted out and in the meantime, many 'get wells' and good wishes to you and your remarkable Hubby. Tinkerbell13
Dear me Jilly
I'm so sorry to hear this , I really hope you got seen by your consultant
That's very much what I had ( Tia )
Not that I'm a Doctor
Goodness I hope your ok x
If it is they say you should be seen within 72 hrs after a Tia , it's very important !!!!
Hope to hear from you soon x
Love Pam x
I'm so sorry this happened to you. Do you know if your INR is always in the therapeutic range? When I was on Warfarin I checked my INR at home. 3 times a week and I was developing blood clots within two days of my INR getting too low. So maybe you're still forming clots. I was switched from Warfarin to Eliquis which prevents fluctuations and better protects you from blood clots. Might be worth your asking about it. Please let us all know how you're doing and what happens. Katie
Thanks for the interesting information Katie, I haven't hear of Eliquis before, is it a new treatment. I have been well within range for a couple of months now and was within range when this happened so I never even thought that it could be a mini stroke. I have written it down in my diary to ask my Haematologist though, thank you
I forgot to ask: are you on hydroxycarbinide too?
Yes, Katie, I am on 1000mg per day
Hope you're feeling a bit better now. I think you should show the footage to your consultant. I know all you wanted was to get home but the nurse at the hospital shouldn't have let you go before making sure you were ok. X
My husband is determined to show the footage at my next appointment Lizzie. To be fair to the nurse, I kept insisting I was okay so it wasn't her fault, I was just desperate to get home and lie down.
Hi Jilly,
Have you thought about your response to the situation? Were you driving?
You were in a place where medical help was available and you chose to run and hide somewhere where help wold have taken time to reach you, putting yourself and other people at serious risk on the journey.
If this had been the start of a stroke the delay could have left you seriously disabled.
You scared your husband witless.
You were not well enough to make rational decisions.
What will you do next time it happens.
Sorry to sound harsh, but your health is important to you.
Dear Borage, yet again, another sharp response to a post of mine. I WAS NOT driving, if I had become unwell whilst driving I would have pulled over and got my husband to come out to me. I am neither stupid, ignorant, nor selfish as you seem to indicate. You can be so rude sometimes.
For your information, my greatest concern was not myself, it was who would look after my 93 year old mother if I was admitted to hospital. She is bedbound and deaf so SHE is my priority. I realized next day that I had been foolish not to seek immediate help but I DID make an appointment to see my GP the next day. You really should walk in other people's shoes before posting cutting remarks.
Oh Jilly, I know how you feel. I took ill because of my PV and kept quiet because I had the responsibility of elderly parents. Bless them they both passed away a few months later. I know this is really a selfish thought but at least I get time to be ill nowadays as my kids have grown up also.
You take care, you certainly don't need any kicks in the bum, you need a lot of "E" hugs which I'm sending to you now.xxAime 😺😺
Hi. Yes, you are so right, people today are quick to judge. If your doctor can write a prescription for a home INR monitor you can check it frequently to make sure you're not falling below the therapeutic level. I was tested and found to have a seperate type of genetic mutation making me a 'high clotter' (medical term is hyper coaguable). You could have that checked too. I admire you for your dedication to your mother. You deserve praise not criticism, especially by someone who doesn't know the facts. Take good care of yourself. You are a wonderful person ! Katie
Thanks everyone for your kind words. There have been many forums I have left because there was always one person who used the faceless opportunity of an online forum to be nasty and judgemental but, apart from two occasions. I have received such warmth, friendship and amazing support on here that I am not going to let those two incidents ruin this fabulous site for me. Thanks again.
Oh my I too have PV is this a PV site! Do any of u have APS ! I'm not sure how I got here! Thx I sure do hope you get well Jill! I think u just private messaged me, but my memory bad so forgive me if I'm wrong! Let us know what ur doc says when sees the video your very smart hubby took! Godspeed
Sorry Deb but I haven't private messaged you???? This is a site for all MPN disorders which includes PV. Hope you find the information on here useful.
Jill
Little critters 😩
Energy costs and inflation going through the roof and now the NHS finally gone to pot!!
A follow up to my post about switching from hydroxyurea to interferon. Questions about switching to besremi or anagrelide.
