PV Help with Symptoms

[josup26]

I need some advice. I was diagnosed in Dec 2019. Since then all of my numbers have come down to normal and hematologists is pleased with phlebotomy and aspirin alone. Though I am doing well I have symptoms that I would say run in waves. Such as sort of a disconnect in my head sometimes a slight headache. From time to time I get a numbness in my fingers that comes and goes fairly quickly. When this happens I immediately think my mortality is near? So then of course I get depressed which makes things worse. I think knowing that these are some things associated with PV you just learn to live with I would be more relaxed. I do take care of myself eat well exercise,bike and play Pickle Ball however here in the US in New Jersey with Covid-19 so many things are on hold which make life depressing for everyone.

I recently lost my beloved dog which is another thing that has broken my heart. She gave me such a distraction I worried more about her than myself. I would love to get another dog but I worry I may not be here long enough to care for another dog. Can you all tune in and help me with this decision.

[ksos]

Hi -- I have ET instead of PV, so I can't speak to physical symptoms. But I'm with you in terms of dealing with depression given the state of the world (I'm in San Francisco where everything is shut down, too) -- and I have so much sympathy for you with all that comes from losing your beloved dog. We lost our two dogs four years ago and it was so hard. Being practical about being in our late sixties/early seventies, we decided not to get another.

But then, two years ago, we changed our minds and got not just a dog, but a puppy -- the sweetest labradoodle in the world. It might not have been a practical decision, but it was a life giving one that I have never regretted. She is silly, energetic, affectionate, sweet and at times a complete dickens -- and because of her, I feel happier and more alive every day. I have some significant limitations because of my illness, and she makes it all so much easier to deal with.

Still, there are practicalities. We know that any day could bring realities that mean we couldn't continue taking care of her. We have an agreement with our children that should we get to that point, they will either take her for their own or find a good home for her. If my children hadn't been able to help out with that, I would have found a friend who would, or worked with a local shelter so that my mind would be at ease. I also know of trusted dog walkers who can help should that get to be difficult.

I hope you feel better on all fronts. Take good care of yourself.

Kim

[josup26 in reply to ksos]

Thank you Thank you. I am so glad you reached out. You have answered my question. If a dog helps to fulfill your life and improve your attitude toward our issues they make our lives worth living. I do have a spouse and close friends that would with pleasure take on finding a loving home if that became necessary.

I hope you continue to move forward and keep loving that puppy. I can see your smile from here.

[ksos in reply to josup26]

And I can see yours! Let us know if/when you find your pup!

[hunter5582]

I think it is important to plan to live with PV, not to die from it. While it is true that PV may shorten our lives, none of us have a MPN-timer ticking away in our bodies. For myself, I focus on living a high quality life for however long that may be. My focus is on maintaining a high quality life for as long as that is possible. All of my treatment is focused on that goal. It is likely that many of the things that support my quality of life will also extend it.

As a person of faith, I do not fear death. Something better awaits me in my next phase of existence. However, I am not quite ready to leave this plain of existence. There are people I love, things I love to do, and many things I would still love to experience. Keeping my focus on all the people and things in this world that I love helps me to keep going even when things get a bit challenging. You can still find joy in life even when things are challenging by focusing on what matters most.

If having a dog in you life is something that brings you joy, then by all means get another one. Whether a puppy or an adult dog, that bond sounds like something you love to have in your life. If you are worried about taking on a pup, there are many wonderful dogs in shelters who need adoption. There are organizations that need homes in which to temporarily foster dogs as well. There is a way to bring a dog back into your life. You just have to choose which way to do it.

All the best to you. Hope you enjoy bonding with a new four legged friend.

[josup26 in reply to hunter5582]

As always Hunter, you lift my spirits. I can't thank you enough for your reply.

[lizzziep]

Hi, I have ET not PV but many symptoms are the same. I often get that detached feeling, and brain fog and itchy ........ the list goes on! I was diagnosed about 10 years ago. I read the leaflet they gave me, looked ET up on the internet and decided I would probably be dead within a month! After a couple of years on aspirin I was put on hydroxy, again I thought I would at least glow in the dark if not grow another head. None of which has happened (so far!!) I too have dogs, they give so much love and joy. Sadly my older dog has cancer so we know every day with her now is a bonus. Please consider at least fostering a dog or giving a home to an older shelter dog, the love you will receive from them will fill your life with joy.

This Covid virus is blighting so many lives we all need a distraction from it. Stay safe X

[josup26 in reply to lizzziep]

Thank you so much for your reply. I guess with many illnesses you must learn to live with the good and bad days. I must learn to adjust to this. Yes I think dog would help me a lot. Something to take care of and not think so much about myself. Life for me has not been the same since I lost my beloved dog. Thank you!