ET Diagnosis Process

Worried you might have a blood cancer?
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Hello there Bill @ProfessorJAK, just wanted to pop in to say how lovely it is to see you and @Ljj sharing experiences. This is what the forum is so great for, thank you both.

May I just wish you a happy 50th anniversary Bill, impressive stuff! Got a long way to go before my own marriage reaches its gold anniversary :treasure_chest:

It’s interesting to read of your experiences of US healthcare in relation to the NHS and vice versa. As a Brit in the US I’ve come to wish we could merge (more like cherry-pick) aspects of many healthcare systems, like the relative freeness of the NHS with the better, faster communications I have with my healthcare in California. Being able to email my doctors helps me keep on top of my various ailments. In the UK there might be a clinical nurse specialist or care coordinator to help organise living with chronic illness.

I’d say there’s also more accountability with US doctors so we have more say in our healthcare choices, whereas in the UK you tend to be at the whim of whichever specialist you’ve been referred to, and their availability locally. I’ve sadly read of many forum members around the UK not having specialists who’ve ever dealt with their specific diagnosis, even ones like our Myeloproliferative neoplasms ('Myeloproliferative neoplasms ('MPN')') that have a great body of research behind them. Meanwhile, in rural parts of the US, like where my mother-in-law lived, hospitals are closing as they’re not profitable enough :flushed_face:

Anyway, interesting stuff Bill and it’s valuable to hear of your experiences too, over in Florida I believe? Not made it to that part of the US yet.

Just a note to you and @Ljj but do bear in mind that the forum is public and so any personal information, including test results, can be visible.

And just to add @ProfessorJAK but do pass by your haematologist any change in supplementation or vitamins, like adding in that iron—early after my diagnosis with Polycythaemia vera ('PV') I realised I was taking a multivitamin with iron, which my specialists pointed out would only increase my body’s overproduction of blood cells. We don’t want to give our bodies extra work to do, right?!

My very British tip to you about injecting vitamin B12 is wondering whether adding it instead via yeast extract like Marmite or Vegemite could do the same job? Something to check that with your doctor perhaps.

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Hi @ProfessorJAK may I wish you and your treasure of a wife a very happy 50th wedding anniversary.

What a great team you make.

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Oh happiest of anniversaries to you both, you sound like an amazing couple x

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Thanks for that, I definitely wouldn’t share anything too private test wise, thanks for the reminder.

That’s definitely true, it does depend a lot on who you get with the NHS. I’ve been lucky so far so fingers crossed going forward.

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So glad you’ve had great care @Ljj, we should all hope to expect the same, and not be too embarrassed to politely ask for better when it’s not quite right!

Easier said than done, I know. Thinking back to a cancer scare I had back in Brighton and the doctor who did the biopsy taking the wrong sample!!! He didn’t read the surgical diagram properly. So further months passed before I could be operated on again, and the anxiety in between was vile, thinking the doctor knew best. Thankfully the biopsy showed it was nothing!!!

Anyway, long may you have good care and I hope you get some information sooner than later @Ljj.

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Great comments @Duncan Interesting that you have had both sets of experience, in the UK and US health systems. Yes I am in Florida, been here 30 years after living all over the US. It is hot but air conditioning and our pool make it livable. Special treats like seeing the sunset at Clearwater Beach make it very enjoyable.

It saddens and infuriates me that so many Americans don’t have access to healthcare. I donate to and vote for candidates who want to fix this. I have a superb health insurance plan through my job that covers my wife as well. My sons are covered on Obamacare plans that are costly but keep them safe.

I have a Word document which I print and give to all my healthcare providers at each visit (and have a copy in my wallet and wife has a copy too) with every medication, dose, details like whether I take them once or twice a day (or in some cases how the does differs by day of the week). I also list all over the counter items (including multivitamin, guifenesen, magnesium), and even nasal sprays and even foot treatments! I even note the dates of any changes. It currently has 16 items!

I also use two pill packs (one that has room for three weeks of daily meds in AM, another that has one week for evening meds). I would never be able to keep up if I tried to do it a day at a time. I’m very careful to stack them properly and then it is very easy to see whether I need to take them for a day.

I don’t mind showing details like test results since I am her anonymously. My avatar is not me although most people likely guessed that. I am careful not to provide details that would make me individually identifiable.

Be well my friend and it is always great to see how involved and willing to help you are here.

Bill

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@Ljj @Erica Thanks, I am a very fortunate man. Met her in high school, knew I had better put a ring on her as soon as possible and not let her get away! We got married at age 21 and have had many adventures. We spent our 25th anniversary touring around England, Scotland, and Wales for a month in a van (people carrier). She has been with me since I was a poor graduate student and we lived in campus married student housing with brick and board bookshelves and a dining room table that we grabbed after someone threw it in the trash! Life is good and a bit of illness is part of the long ride…

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Oh wow that’s terrible I’m sorry that happened to you! The anxiety alone must have been awful.

Thank you for your message and support, this community has helped me so much the last few days and I’m so grateful.

Lisa.

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Happy 50th wedding anniversary to you and your wife @ProfessorJAK

An incredible milestone. Here’s to many more happy years ahead

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I meant to say as well that my father died from a heart attack at 59, I’m 55 this month so the increased risk of heart attack if it is Essential thrombocythemia ('ET') has been a bit scary.

Thanks again for all your support, much appreciated.

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Oh thank you @Ljj, it was years ago thankfully and the result was better than I ever hoped for! But yes anxiety can be truly rubbish. Sometimes it can helpfully be a handy guide as to what’s really on one’s mind.

Just wanted to share a useful tip about having thinner veins that helps me when I go in for blood work that may be of interest—drinking lots of water the day before and the morning of helps thin blood and plump up veins, making it easier to find and draw blood. Thanks to my lovely phlebotomist nurse Ama for telling me that trick, after exclaiming once “oh honey, your blood is thick like molasses today!” The whole ward laughed at that. Not always so doom and gloom, thank goodness!

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That’s a fantastic tip thank you so much, it really hurt last time so I will definitely try that!

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@Ljj It is scary when we have family histories that are concerning. We’re not allowed to post links to research studies here (for understandable reasons) but as a health researcher who has looked in depth at research on treatments that lowers platelets in these conditions, there is strong evidence that these treatments lower risk of thrombosis (like stroke and heart attack). The quest to get a clear diagnosis and management from a specialist is worth it :oncoming_fist:

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