PV strikes again

Hi all
Apologies for being absent from the forum for the past couple of months, I have been in hospital. Polycythaemia vera (PV) caused clots on the veins of my bowel, then just when I thought I was recovering my bowel lining detached itself, a horrible process. This all left me so weak that I am receiving respite care in a lovely little are home inTintagel for a month, then I am hoping to be able to go home. Obviously my previous blood thinners did not work so now I have been put on warfarin.

Whilst I was in hospital I was having daily blood tests this did not prevent me getting a deep vein thrombosis in my right arm. The ward I was on did not have an INR machine that worked so instead of a little prick on my finger I had to have the needles inserted and a couple of vials of blood taken daily. I really hate needles.

Life seems to have become a bit of a lottery, I have survived clots in multiple places but don’t know where or when the next clot will appear.

I am sure the nhs are doing their best but it is less than impressive, communication whether it is between dr and patient, dr and nurses is totally lacking and whilst nurses are highly qualified on paper their people skills are totally lacking, I know they are short on staff but personal care seems to have vanished, some days I didn’t even get a bowl of water to wash, and would wait for hours for pain relief, my experience in A and E is too horrific for me to recall, hours and hours of waiting whilst in pain, I was eventually put in a high dependency unit. However I am still alive and for that I am grateful.

Marylin

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Hi @Marylin

Oh my goodness, I’m so sorry you’ve had such a terrible time. It must have been so frightening. And for such a long period too, and in so much pain. I really feel for you.

I hope the place in Tintagel is lovely, and that you’re able to relax and recuperate and make a speedy recovery.

Take care.

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Oh @Marylin we have missed you and your experiences and support to others.
You certainly have been through the scary mill, yes, you must feel very weak and respite care in a lovely little home in Tintagel sounds just what you need.
As you say you are still alive and for that you are grateful.
The Blood Cancer UK support line is there for you as are we so you can say it how it really is for you.
This is your time to regroup and recharge your batteries.
Please look after yourself, be kind to yourself and spoil yourself.

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Hi @Marylin. It’s really lovely to hear from you but I am so sorry to hear you have been so poorly.
All of this must have really taken it out of you and I can only imagine how you can be feeling. I’m hoping the the beautiful respite spot is helping with the recovery.
Yes, it’s great to be alive but it’s fine to feel fed up and frustrated to.
I hope sharing on here has helped. It’s good to have you back and please keep us updated on how you are doing, when you feel up to it off course X

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@Marylin

Welcome back but so sorry to hear you’re having a rollercoaster of a time.

Always eager to particular hear from people with Polycythaemia vera (PV) as I’m still in my early years and trying to make sense of it all and what to expect. I had a pretty major heart attack, though I’m still in denial, in November last year and that was my experience of a clot and though I had zero idea what was going on I was lucky to ring up 999 as in hindsight it saved my life. Ive not had anything conclusive to say what brought it up but there is a chance is was the Polycythaemia vera (PV), which like you, has put me on edge since.

November was the very first time I’ve ever spent time in hospital and In my short stay (4nights) I had great interactions with staff and poor ones too and it’s amazing how much of a difference it makes to you. Seems hospital experience is a bit like the weather and its a real shame the levels of inconsistencies of help & support people are receiving. With all the chaos going round, you just have to benefit of the doubt sometimes but that’s not deter the fact your suffering and needing of care.

Hope you’re recovery is treating you well and I very much look forward to hearing updates from you.

Thank you for sharing and take care

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Hi @Marylin I have been thinking about you and just wondered how things are with you now?
Look after yourself and be kind to yourself

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Hi all
Thank you for asking how I am. I have been home a week my respite care was just what I needed. They were so caring and supportive.

My recovery is now being organised by my treasure of a carer. She has kept my bungalow and garden in order whilst I have been away as well as coming to visit me and bed Bath me in hospital twice a week. I really don’t know what I would do without her.

I am gradually improving and treat myself to half an hour of pruning and tidying up in the garden every day if it isn’t too hot. It is so therapeutic to be amongst growing things that are beautiful.

Today I drove our car for the first time in over three months, it was Sunday so the traffic was fairly quiet. I felt that that was one big hurdle I had managed to overcome. A great boost to my rather low moral. Several friends and neighbours have called with bunches of sweet peas and runner beans, offers of help it is quite overwhelming how kind everybody is. My husband is in a care home having his care needs assessed by adult social care, we await the results with trepidation.

I now have a safety key holder by the front door and a button to pressin case I fall. I have been put on warfarin as apixieban didn’t work for me hopefully i won’t get anymore clots but life is a bit of a lottery. The GP says it will be at least two months before I make a full recovery but just being home has been a big boost.

Apart from looking rather tired people say how well I look which sometimes irritates me, Polycythaemia vera (PV) gives my skin a tanned look which is deceptive. I would love to wake up one morning and feel normal again but I don’t think that is going to happen somehow but I know there are many who are worse off than I am. Another blood test tomorrow, how I hate them. Marylin

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Oh @Marylin great to hear how you are and a lot has been happening with you.
You certainly seem to be achieving those hurdles, you will be Cheltenham horserace winner soon.
I find personal achievements/hurdles really give me a boost.
Your carer really seems a a true friend.
How easy for you is it to ask for and accept help.
I love sweet peas,.
Let us know how your husbands assessment goes.
Oh, you know how annoyed I get by the ‘oh, you do look well’ when I am really struggling and feeling awful.
Yes, blood tests are horrible emotionally and physically but at least you are being monitored.
Don’t forget slow and steady wins that race and be ever so kind to yourself and spoil yourself

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Thanks for the update @Marylin its lovely hearing from you.

Echoing pretty much everything @Erica has said…

Though time in hospital can be very hit and miss, it’s very nice to feel cared for and looked after and your carer sounds a real gem.

There’s nothing like regaining a bit of independence back and taking control to do things you enjoy and make you happy. It comes in so many forms and I really think you only appreciate it when it’s been taken away from you.

Yea waiting for test results and having blood tests. But they are done for you best interest and a way of monitoring what is best for you. Though I know it’s not nice as they often play make you feel like a puppet whereby they are the strings.

Like Erica has said small steps in your recovery to get to where you want is best.

Continue to keep us all updated :slight_smile:

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You sound like you have had a rough time @Marylin but hopefully you can see the light at the end of the tunnel and your luck will improve. I can identify with your hospital experiences as I always found hospital staff more concerned about their clocking off time than how I was feeling and I felt very alone whilst I was an in patient. I had a horrific time in A&E too and was treated really roughly and unpleasantly by staff there. As others have said though, small steps to something better.

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Hi all,

Hope you are all keeping as well as you can do. I have not been on for a while as I just seem to be plodding along not really knowing what’s going on with my Polycythaemia vera (PV). My tablets increased in April to 3 hydroxy a day, but I had a consultant appointment Tuesday (if you can call a 3 minute phone call) an appointment and was told my platelets are still high and haven’t responded to the increase. He then said he didn’t want to increase them anymore (which I am pleased about) as this would make me anomic, so now what? Oh lets just review again in 3 months! I think the service I am getting is shocking, he told me my platelets are high and then said, I am happy with that! I asked if he could make the appointment 2 months rather than 3 as that’s a long time and they certainly wont go down in that time, only up even further, and his answer was, well it depends on the clinic! I guess 3 minuets of his time is too much to ask for 2 months time:-( I am not sure why but my red blood cell count is behaving and staying in the normal range but my platelets just wont do as they are told. Does anyone else know what the next step may be or an alternative to the hydroxycarbamide?

happy Friday everyone :smile:

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Hi @Colbert1970. I really feel your frustration and it is completely understandable. Telephone consultations can be so difficult and it’s really hard to ask all the questions that you want to when you are not face to face with your consultant.
It sounds like there are lots of things you want to ask. Is there any chance you could request another call or do you have a specialist nurse you could contact?
It may be you could request a second opinion or the Patient Liaison Service may be able to help?
In the meantime it may be worth giving the BCUK support line a ring.

They will be able to advise more on next steps and ways forward.
Please keep us updated on how you get on :blush:

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Hi @Colbert1970 that feeling of not knowing and not feeling satisfied with your level of care must be horrible and leaves me with a nasty taste in my mouth and feeling in my stomach.
It would be difficult for us to answer your questions as we are all very special unique beings and your consultant might be taking so many things into account when he speaks to you that in 3 minutes he could not discuss with you.
Have you got a CNS (Clinical Nurse Specialist) you could contact to ask your questions to?
I will copy your post to the Blood Cancer UK nurse advisors for you @GemmaBloodCancerUK @LauranBloodCancerUK @Heidi_BloodCancerUK
Look after yourself and please keep posing, A very happy Friday and weekend to you too.

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Hi @Colbert1970

I have Polycythaemia vera (PV) too and an alternative to hydroxyurea is pegysys interferon Alfa which I’ve been on and didn’t suffer any side effects apart from first dose which the nurse by mistake doubled up on… it wasn’t a problem as I was on a low starter dose.

If hydroxyurea isn’t for you it maybe worth asking about interferon which isn’t classed as chemo but does involve self injecting a small needle into you abdominal.

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Hi all
Thankyou all for your supportive replies. A lonely Sunday afternoon has made me feel a little down. I know a short walk would cheer me up but just don’t have the energy left to do one. So will have a moan to you all.

Had a letter from Adult Social care wanting me to sign to commit my husband for a year to the home he is in which. He doesn’t like. When we protested and refused to sign they said it was just to get funding allocated to him, if that is the case, why doesn’t it state that. I am not signing until it does.

Had a busy week, out to lunch 3 days with friends which was rather nice but rather fatiguing. I am having trouble sleeping, my GP prescribed pain patches they seem to take a couple of days to work and peter out before the next patch is due which might be a part of the sleep problem. I try not to nap during the day, after lunch is the worst time for my eyes to shut.

I have bought myself an air fryer as it seems such a waste of electricity to put the oven on for one sometimes 2 person. Still experimenting but put sausages and ciabatta frozen rolls in together for 12 mins and had a delicious sausage sandwich/roll. Frozen breaded fish comes out beautifully moist. It doesn’t seem to use as much electricity as my kettle when I look at the bars on the smart meter.

Dreaded INR test tomorrow morning, they cannot seem to achieve anywhere near my required 3.7, it’s either under 3 or way over 4. Not sure why itis so difficult. Need them to get it right as it makes me worry that I might produce more clots.

Back to watching gymnasts do impossible things in the Commonwealth games.
Marylin

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Hi @Marylin I am not surprised how exhausted and fatigued you feel and that you cannot sleep, you have had a busy week emotionally and practically and have a lot on your mind.
Your air fryer sounds a good purchase to me, I haven’t got one…yet.
You are not moaning you are just saying how it is for you especially today.
If you would like to speak to someone the Blood Cancer UK support line is there for you and as you know we are all here for you.
I hope your INR test goes OK tomorrow, please let us know how it goes.
Keep watching the gymnasts I enjoy doing that too.
Be ever so kind to yourself. xx

Good luck with the test tomorrow @Marylin . Your air fryer sounds like a culinary adventure!

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Hi
My INR has gone even lower, down to 2.2. This means that. My blood is thicker and more liable to clot. New regime to follow hopefully will start to remedy the dip. It is a bit of a worry. I suppose I should report it to my haematology nurse.

Went out to plant a honeysuckle that had arrived but couldn’t get my trowel in The soil. It is mostly clay which solidifies in a drought. It will have to stay in its pot until we get some much needed rain. The clouds are parting and the sun is coming out, so no rain today.

I have become hooked on a tv programme ‘Below deck’ . Put a mixed group of people in a small space, such as a luxury yacht, and the dynamics are quite entertaining. It’s probably on a par with the trashy novels I read but they keep me entertained too. Reading the papers these days makes me so angry, I rarely agree with all the ‘woke’ pronouncements, as for politics ‘boring’. I am a lost cause I know.

I shall try cooking a frozen ready to cook pasty in my airfryer, another experiment. It doesn’t require any effort on my part, apart from fishing the pasty out of the freezer, so I can do it.
Marylin

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Hi @Colbert1970,
Thank you for sharing this with us all. I hope you are doing okay?
We appreciate how beyond frustrating & worrying it can be when you do feel like the time you are given with your team is limited and you do not get the answers you are looking for.
May i ask have you been given a nurse specialist number at all who you can liaise with and also ask some questions of?
If not maybe this is something you could call your haematology secretary about & enquire.
Please do also know that you can indeed do as you have & request an earlier appointment in order to have any of your concerns or questions addressed.
In addition to this please do let us know if you think a call with our own nurse advisor team might be helpful in any way

In case it may also be useful in facilitating another conversation with your team our health information pages here talks about a variety of treatment options- Polycythaemia vera (PV) treatment and side effects | Blood Cancer UK.

Do Take Care, Lauran

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