Yesterday's reminder

Hi guys, had a haem appointment yesterday which went well and I was feeling good until the haem said, we have to keep an eye on you because PV can progress! Which of course I know it can but does anyone else get the sudden deflated feeling when reminded of our condition? It seems daft to feel like that but I had the same feeling when the insurance paid out on my critical illness policy!

Hey but I'm fine, I'm lucky just now, just feeling a bit vulnerable I suppose. Just some thoughts, like our brave JR, I am grateful to have friends to share them with. Aime xx

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  • Hi Aime,know what you mean.I am 'deflated 'just now.I have to go on to Plavix and a statin,on Hydrea &aspirin normally,Doc says 'I am at risk' so yes the worry starts again.

    Hope you keep good blood results,my H C T is high ,think that's why I must change meds.How cheerful J R stays,wish I had such spirit.Best to you.

  • Thank you Inca, hope you get back to being stable soon. Aime xx

  • Aims , , it's all very real especially when a consultant points out the fact that it can progress. . And to the point where the drugs which by and large treat symptoms of the underlying condition as was my case with MF, stop being effective and a more radical approach is needed. . That doesn't however mean yours will so stay upbeat and don't let the xxxxxxxx grind you down. . 😃😃😃JRx

  • I won't JR, same with you, keep smiling. Aime x

  • I totally get that Aime a visit to the heam is always a gentle reminder of the reality of things .

    thank you for sharing those feelings it's good to know others feel the same .

    Helen x

  • Hi Aime I total agree. It's very sobering sometimes but JR is right, the transformation dosnt happen to everyone and we have to hold on to that positive thought. Keep smiling,

    Karen x

  • My hubby changes character totally in the week before a haem visit. Hes clammy on the day and fine as soon as we come out. I think he would fall apart if haem told him anything bad. He doesnt cope well mentally with his mpn

  • My hubby ended up in hospital last week with pneumonia which also caused atrial fibrillation. He wasn't coping well either for a start but seems a bit better now. He panics easily about his health, has ended up on warfarin today and also needs a hearing aid. It makes a change as it is usually me at the medics. However I think I have persuaded him its probably a blessing in disguise that the AF was picked up because of the pneumonia.

    I think we are both very lucky that our conditions were picked up early enough before they caused us serious problems. Kindest regards Aime x

  • Hi Aime-yes, most days I sail through the day not worrying, but like you something happens - in my case it was the remark that I might progress to blood transfusions down the road- to remind me and I do feel vulnerable. I usually go for a walk, somehow putting one foot in front of the other makes me feel a bit more in control. If the weather is bad, I get out, I think to feel part of the world. As Helen 1952 said I'm glad you shared its good to know others feel the same.

  • Dear Aime,

    Good to hear from you and good you are sharing your fears. I wondered if I would add a message and in the end decided I would.

    You and I started on this road almost at the same time you know, I think you were one of the first blogs of interest to me. I was so surprised to find I had PRV as I never had anything to worry about health wise. Having a super doctor who explained everything to me I relaxed and decided to go with the flow. That was three and a half years ago.

    Since then there have been changes and a bone marrow biopsy last year showed us that I had progressed to MF. Not me, couldn't be I thought, but, the truth was there.

    Now I want to tell you, the fear is definitely worse than the fact. I met and was accepted by the wonderful Professor Harrison who imparted nothing but positiveness and offered me the drug Ruxolitinib. It has worked superbly for me, causing a bit of an anaemia problem which is addressed as necessary. Whilst on this particular point following up on something Jean r mentioned, I have had two transfusions months ago and that went without a hitch. Another fear faced, addressed and forgotten.

    What I am really trying to say, is don't worry before there is a problem because there is no reason particularly why it should change from PV - some of our bloggers have had PV for years and years, AND if it does, only IF it's not always going to be that bad. Please don't worry overmuch. By the way how is your shoulder?

    Best wishes everyone,

    Linda

  • Hi guys, thank you so much for your replies, they mean a lot. Linds thank you got the all clear for my shoulder too, surgeon removed a big bone spur which was rubbing on a tendon. As he says when it's gone, it's gone, so it's fixed!

    I agree fear is often worse than the fact. I have said that to lots of people who fear cortisone injections. If you can relax, they are easier to receive.

    You guys are great, that's the strength of this forum, we understand how our fellow sufferers are feeling. Best wishes Aime xxx😺

  • More on your plate with hubby poorly,I cannot manage my horses now,house and garden need help.....I do work( am sculptor),but slowly,frustrating! My hubby needs an op on arm,so that will pose problems!!!Hope yours recovers soon,you keep as wll as poss too,try not to worry,just makes life worse,best wishes.

  • Oh I know Inca there is always something needing done. I must admit I am finding it harder to work full time nowadays. Quite a struggle especially when something else happens like hubby in hospital, a bug or virus pops up, etc. we can only do what we can and I have come to realise that if eg clothes don't get ironed because I'm shattered, they r clean and that's all that matters. Hope ur hubby's arm op goes well and it's not too stressful a time for you.

    I think my attitude has changed a lot since being diagnosed with PV, it was a reminder of mortality, to make the most of what I have got and even with PV I am so much luckier than many folks. Take care Aime xx

  • I too,have learned to let things go,my Dr advises ,do what you enjoy,so I try.Thing is we need the support of husbands,mine has to do things he never dreamed he would have to!!I worked on a sculpture this morn for too long,ended up just about off my legs ,then slept for the whole of the afternoon.Feel now I must get the work done that I need to do,having P V and not sure what is going t,o happen next certainly,as you say ,makes you face mortality.So good to talk on here to people in the same boat.Bon Chance you and hubby for better health soon.Warm wishes from a scorching S W France, very hard to cope when an M P N er !!!!

  • Yes husbands have to adapt! Hope you have more energy soon. I sympathise with the heat. Once it gets to over 20 degrees I start struggling. Thank goodness it doesn't go up to 30 very often in sunny Scotland. Best wishes Aimexx😺

  • As I was diagnosed with my MPN in January I just wondered how many years does PV normally take to progress into something else such as MF? My Haematologist told me it can go from one to another and back again.

  • Hi Mark,

    My understanding is that there is no answer to this question. For some people it can happen quickly, for some it may never happen.

    I believe only about 10-15% of people with PV/ET go on to develop MF. There are people who have had PV/ET for decades without progression.

    People with ET can find themselves changing to PV, and people with PV can find themselves with elevated platelet counts as you would find in ET.

    I have never read anything to suggest people go from MF to ET/PV - i think for that to happen the bone marrow, which becomes scarred (the fibrosis) would have to reverse itself on its own.

    Paul

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