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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (400)Comment receiving replies
Ms. Lori, you are such a gem!
I too have had some fear and believe fear is a good thing if it motivates not stagnates. Information is power, there are a lot of different views I think to fit different situations and we are all different and have different needs and treatments. Ms. Lori has been tremendously helpful and level-headed. I'm in a not know stage of PV. We can't find the cause so far, we have checked my stomach organs, and nothing significant. I found labs from 2015 where my RBC and HT were elevated if not high. So I've had it for a few years now. I've been referred to a cardiologist now and also referred to a sleep apnea test. I understand from my doctor that sleep apnea can cause this elevation. I know I have not slept well since my cervical injuries and surgeries in 2003 and 2006. So we are still looking for the cause and again if I understand correctly, if we don't find an obvious cause then I could still have PV and my body or bones or bone marrow could just be screwy. The issue is when you don't have a clear-cut gene-supportive diagnosis or have clear-cut damages. I've got damage but it's age-related or injury-related so I don't have a clear-cut PV result at least yet.
We have tried one phlebotomy to see how I respond to it. I just had that done this past Friday.
We are all different, and this disease is different and has variations and versions, and well not all is known about it either. There isn't necessarily a finite answer or diagnosis or treatment for all. I hope everyone finds that perfect individual treatment that makes them feel better and has a good doctor and support. If I can help anyone to listen....I'm here! slow sometimes but I'm here.
Thank you Ms. Lori for all your level and supportive words and all on this site. It gives me lots of resources and a comfort.
Replies to "Ms. Lori, you are such a gem! I too have had some fear and believe fear..."
I couldn't agree more, Lori has and I know will continue to be a huge support to all of us, thank you Lori!
I was a blood donor for YEARS and when I found out I had the good "baby blood" it motivated me to give as much as possible. About 5 times a year, it was easy peasy for me, I'd fill the pint in less 10 mins and had no probs with walking out 10 mins later after a juice. That had kept my PV in check, who knew? Then we head to covid...no blood drains as I called them or now, jokingly, Vampire Visits 😉
Prior to the PV diagnosis, I went through a horrible gastrointestinal few months, lost close to 40 pounds and finally diagnosed myself with the help of my health coach with SIBO - ALL the years of goastro docs telling me I had IBS. Nope, had SIBO which is the #1 cause of IBS and here's the kicker - curable! I was kind of furious, I've had these issues since a kid. One bout of food poisoning can cause it, if you have IBS - research, read and I can give you books and podcasts to follow etc. I educated myself. Apparently gastrointestinal docs don't tell us this because most don't want to do the work involved to fix it, they want a pill. It's not easy but I had NO doubt I was putting in the work. I've healed my gut and can actually enjoy a cup of coffee now and then. Well worth the work to me, not for coffee at all, but for having a normal life.
Sorry for novel, moral of the story is, do your research, get in tune with your body, don't expect doctors to "fix you" but you need their guidance and advice. Push back with questions, ask them and be your own advocate.
I've been dealing with the fatigue and other not great side affects of PV, next BP spiked and it's looking like because I need to be more active....like I used to be and LOVE. I'm on a plan (thanks to my best friend) to build my endurance back up to go out west and ski for 2 weeks this winter. Of course that comes with not skiing like I used to ski and may need to get CBCs done and blood drawn, easy peasy. I will not give up what I love to do if at all possible and continue to live life to its fullest! I'm a young 60, my Dad is 88 and mom 83 (who ski's with me) and they don't run like they used to but kudos to them to always wanting to do the right thing health wise and keep active - body, mind & spirit. That's key.
End of novel....ps, I'm not reviewing so I'm sure tons of typos 🙃
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Good morning, @chella65. Thank you for your kind words. I’m happy I can be that voice of calmness and comfort for you. I can assure you I wasn’t always this way but my experience with overcoming an aggressive form of leukemia has put life into a different perspective for me. I always feared the worst…not even knowing what that meant! I think we humans all have that fear of the unknown or some nebulous thoughts to “What if??” Oddly, after experiencing ‘my worst’ I was left with a sense of calmness and learned not to fear much of anything…ok, heights are still an issue! 😅
Our blood is incredibly complex so it can be a challenge sometimes to pinpoint what is causing a condition such as PV. Your doctor is right, there can be a correlation between sleep apnea and a high RBC and Hematocrit. If you’re not getting enough oxygen while you’re sleeping, the kidneys sense this and send a signal for more red blood cells to be produced. The cardiologist or your hematologist can also check the erythropoietin (EPO) level in your blood. It’s a hormone that your kidneys primarily produce and helps your body maintain a healthy amount of red blood cells (erythrocytes). If it’s low, that can show you’re not getting enough oxygen. They may also check your kidney function…usually there is indication of issues there with blood work.
The overnight oximetry test is super easy. It uses the little oximeter unit that you’ve most likely had when having blood work done. It checks for oxygen levels in the blood. You clip it on your finger overnight, connected to a wrist band that collects the data.
If this isn’t the issue, and if your doctor hasn’t done so already, you may likely have more blood work done to check for an acquired gene mutation such as JAK2 mutation. That is the usual culprit for myeloproliferative blood conditions. Your doctor may also suggest a bone marrow biopsy. (Sounds much worse than reality) The doctor takes a sample of the marrow and peripheral blood from the bone marrow…which is the manufacturing site of our blood…the heart of the immune system. That can give your hematologist an overall picture of the health of your marrow and its ability to produce healthy blood cells.
Our bodies are meant to heal. But sometimes things get thrown off track and then we need help to get back to functioning properly.
I’m right here for you any time. ☺️ Please let me know what you find out from your oximetry test, ok?