Polycythaemia Vera & Dental Care

[CarolineL]

Hi Duncan,

With a vegan diet I don’t feel I’m particularly deficient in anything, but you’re right that the Vitamin C tablet per day is having an effect. I figure with being immunosuppressed that a little boost here and there won’t ever hurt!

It’s really important to stand up for yourself with your healthcare, just like you did with your previous haematologist. As I said to Erica, healthcare should be a collaborative process and you have to have faith and trust in your healthcare providers. If not, and if you’re able to, then you need to move on to someone who will actually listen to concerns and explanations rather than simply dismiss you as if you know nothing about your own body and health! I am very good at writing compliant e-mails (when it is warranted) so the dental practice itself and their head office (it’s a chain called My Dentist) will certainly be getting a strongly worded e-mail from me about their poor care and the fact they were trying to fleece me!

All is good (touch wood!) health wise thank you. My Apixaban seems to be doing the job and I’m stable at the moment, not having had a venesection for 13 months! I’m pretty pleased with this as I was told it would likely be every 2-3 months I’d need one - clearly a vegan diet is working for me and having positive effects! I’m also only needing to have haematology appointments every 3 months at present which is good as at one point I was there every week and then every month so I felt like a bit of a pin cushion! The only issue at the moment is low iron (down to 3 at the last count) but I’m not having too many symptoms from that, just a little bit of tiredness, the very odd headache, and a little light-headedness every now and then. The haematologist said that they will test my iron again at my next appointment, which should be next month, and if I’m still low and as I’m stable they may prescribe a short course of low iron tablets. It’s a bit of a catch-22 and a very fine balance as the iron promotes red cell production and this could necessitate a venesection which would then drop my iron again! It’s almost that you have to choose the lesser of two evils and decide what symptoms are worse - low iron or Polycythaemia vera (PV). I am still in a much better position than others so I am fortunate and am making the most of it whilst it lasts - make hay whilst the sun shines as my Mum would say!

I hope that you are feeling well too and that everything is good with your new healthcare team. Do let me know how you’re doing and take care of yourself.

[Duncan]

I’m really so pleased that your treatments and bodily responses to them are going so well @CarolineL! It’s so reassuring to know others like you are living well with these Myeloproliferative neoplasms (MPN). I get a bit lightheaded too, after taking my medicines with dinner, but I always have so it might be from the statin I’ve taken since my heart attack years ago.

I feel similarly about my veganism being healthy enough not to need supplements, but why not have a boost like you say. Plus all the bonus hydrating these days means my skin has never been better! Well, once I figured out how to moisturise properly. That was another benefit of my new haematologist, who is younger, paler, and taught me some basic skincare for living under this California sunlight that I really should have already known Finally gone is my ashy, dry skin!

Thanks for asking after me, I’m doing well! My haematologist slowed down my treatments after I started seeing him to check other stuff out in case it was affecting the Polycythaemia vera (PV), like my lifelong insomnia. I got an Oura smart ring (I’m not techie, nor into jewellery, so this has been a big change) and it’s actually become invaluable for checking what’s going on physically in my body which I can match to my more emotional side effects. Highly recommended if you want to keep track of heart rate, sleep, cardiovascular strength, and all sorts of minutiae relating to sleep and exercise without having to wear a big smart watch or similar.

Just wanted to say how excellent it is that you haven’t needed venesection for so long. That Apixaban is clearly working! Know what you mean about low iron and the juggle between sustaining energy levels whilst not becoming anaemic—my energy seems to have balanced out to being way better than just after starting hydroxyurea but not as high as prior to diagnosis. I’m open to the idea that my reaction might be psychosomatic and am practicing adding more activity in to see if I can build up to my previous stamina. Long hikes are just too exhausting at the mo, and thus aren’t enjoyable these days (unless they’re really flat), but I’m doing extra yoga to make up for missing out on my more remote adventures. I’m in awe of folks who say they’re off doing epic walks or bike rides while living with these Myeloproliferative neoplasms (MPN)!

As for writing complaints, well it is our right if we’ve not received adequate care and perhaps if more Brits broached these awkward situations at the source then maybe there’d be fewer rubbish healthcare issues! I’m still sitting on the letter of complaint I wrote to my first haematologist, unsure whether I’ve got the energy right now to deal with his response should I send it. Added into my issues with him is the vast expense of his treatment when he barely did anything! However, I trust my healthcare here to support my issues, and my family doctor is totally on my side and we joke about how shoddy that first doctor was. It’s more a case of can I be bothered right now with how tiring I expect it would be to take the haematologist to task for his rubbish treatment when my energy is only just levelling out. Decisions, decisions

Keep well @CarolineL! Long may we live healthily as vegans with Polycythaemia vera (PV)!

[CarolineL]

Hi Duncan,

Glad to hear that you are doing well and keeping active, even if it’s not quite what you’re used to. Yoga is a great exercise for body and mind so extra sessions of that won’t hurt at all. I really must get back to Yoga as I used to really enjoy it - life is just so busy that this always seems to get pushed onto the back burner but I must make more effort!

Thanks for the tip on the Oura ring. I hate watches but am really interested in this new technology so this might be the answer for me!

With regards to your complaint, I completely understand how you might feel that you simply don’t have the energy to deal with it at the moment, especially with your feeling that your previous haematologist may not take it well. On the flip side, I often find that if I haven’t dealt with something as I feel I should then it becomes a niggle and a source of anxiety which can affect sleep etc. so perhaps it may be worthwhile to rip the band aid off and not have it preying on your mind? You know that you are unlikely to get the response you want, but sometimes the simple act of having your say can be incredibly helpful and perhaps it may make him stop and think about his actions and consequently give better treatment to future patients. You already have other medics on your side who understand and agree that he gave you poor healthcare so you are already vindicated and really his response is of no importance, but you informing him of the effect it had on you at an already difficult time may do wonders for your own mental health. Worth considering anyway but do things in your own time and when you feel ready.

As you say, long may we live healthily and do take care of yourself.

[Duncan]

Aw thanks for understanding @CarolineL. I know only too well what you mean about something niggling away becoming a source of anxiety and poor sleep. I hope you haven’t had to deal with unruly anxiety too.

Pre-diagnosis, stuff that felt confrontative could agitate my PTSD, like its wonderful effects on social and relational anxiety. Thankfully I can regulate that pretty well now. Current me, however, feels really fortunate to have been referred to a great new haematologist without any overwhelming anxiety colouring my decisions. I didn’t even have to challenge that first rubbish haematologist thanks to my family doctor spotting his sloppiness and sorting the referral out for me. Now that I’m settled into treatment with my new haematologist, know what’s to come, and have more confidence in what I know about Polycythaemia vera (PV), I think I’m ready to let the former supposed specialist know just how poor his care was

The idea that he could still be misinforming fellow survivors about what they’re living with motivates me even further, plus the disgusting expense of it all. So, you know, I feel ready and know I have support, so that can be my next project—letting that terrible doctor know why I was referred elsewhere! Thanks for the pep talk, it worked

As for the Oura (other smart ring brands are available, but not recommended), it has honestly changed my life! So much data and thus granular detail about many aspects of my health, and all in a lovely simple ring. They’re overpriced I’d say, with an annoying monthly membership fee to get all the ongoing results, but having it takes the edge off a lot of my health anxiety so feels worth it.

Related is the yoga I do again thanks to the Apple TV Fitness app—another bit of tech that is hugely beneficial. Having it on the TV thing means I can access all their yoga classes (for what it’s worth, my favourite yogi is Jonelle Lewis) and keep track of how it affects me thanks to the smart ring. Being able to do yoga in front of the telly at whatever time of day for however long really suits me. No smelly in-person classes for me!

Right, better get on with editing my letter’s anger level so it won’t get me chucked off my health insurance! Lovely to catch up dear @CarolineL, be well!

[CarolineL]

Hi Duncan,

I’m so glad you’re going to submit your complaint. I really do think you will feel better for doing it and you may even save someone else from going through your horrible experience. As you so rightly said, in the US everything healthcare wise is chargeable so to charge an extortionate amount for an awful and dismissive service is outrageous!

Having looked at the Oura rings they are a tad on the expensive side but if you’re getting a benefit from it then perhaps it is money well spent? I also do Yoga at home as I started this during the pandemic and have never gone back. Added bonus is that no-one else can see my poor balance and wobbles in certain moves!

Best of luck with your complaint and even if you don’t get the response you want at least you have had your say and perhaps it will sink in at some point and make your old haematologist think on!

Take care of yourself and sending all good wishes.

[Duncan]

Oh yes, totally money well spent on the Oura, plus they’re often on sale I’ve noticed around “Black Friday” AKA the day after thanksgiving over here.

So you also do yoga at home! I love it, I’m always falling over and laughing my face off as I’m also rather wobbly. Bet you’re more elegant than you feel. I’ve been enjoying finding extra flexibility and improved posture and breathing deeply again, especially how it helps power me up hills and lets me deeply breathe in delicious forest air! Anyway I could talk about moving my ageing body all day

I’ll let you know how it goes with the letter of complaint. Thank you again for the motivation!

Be well @CarolineL!