Deaf, a bit Down, but delighted NZ won first 2 America's cup final races!

[stillkicking]

Ever since going to great lengths at school to avoid sport I have rarely taken much interest in it, however, I do get a little surge of enthusiasm when I see the NZ America's cup team zipping around the course on the strange flying boat things that they sail now, and winning races, especially now they are in the finals. Ha, ha... NZ 2 America 0 on day one of the finals! Mmm... yes that means we are 1 ahead of them, due to the odd rules of the cup, but it is a start!

It has been a frustrating few weeks since I last posted anything on the forum. Due to problems I have with my ears I had grommets put in several weeks ago. One side was successful, but bled slowly for many hours post surgery and I lost my hearing that side for a week and a half or so due to blood clots on both sides of the eardrum. Regards the other side... the Ear Nose and Throat surgeon expressed concern just before she operated because the eardrum was sucked right in with negative pressure and she thought it might not be possible to fit a grommet. She nicked the drum to equalise the pressure, and then attempted to fit the grommet. Sadly, the "weak and papery" (her words) drum tore a bit and the grommet dropped right through and, though she made several (painful) attempts, she was not able to retrieve it. She thought the grommet would not do any harm left where it was. At first that ear felt OK, until the eardrum healed over and fluid started building up behind it, and my hearing slowly ebbed away. Weeks later, I have greatly reduced hearing on that side, a head that feels like it is in a bucket of water, I find conversation difficult, especially with a group, and I am waiting to see another ENT privately at the end of the month who may one day be able to operate on it at the public hospital. I will be seeing ENT number 2 the same day that I see my Haematologist. When eventually I have the ear operated on I will need a general anaesthetic to have the ear problem resolved, and ENT number one says I should have a more permanent drainage tube put in which may involve drilling a wee hole through bone.

My platelet counts are probably above 1000 now (they were 976 at last count a month ago and have been climbing at every test). I suspect that I will need the platelets brought down to more sensible levels before any surgery. I have a year and a half to go before I am 60, which was when the Haematologist said I would go on HU.

I have been reading with interest about interferon, particularly the slow release sort, and am hoping that I might be able to be offered that, but am not sure if it is available in New Zealand?? Maybe one of you will know? I have been troubled with chronic mouth ulcers for the last few years, and also have the sort of skin that burns happily in the sun at 9am, so the HU treatment does not appeal to me.

Any thoughts from you regards treatment would be appreciated. Also ideas about what to ask the haematologist.

I have felt very isolated here as my GP does not know much about MPNs (I don't blame her for that), and I have not been offered anyone to contact in between Haematology appointments, which look like they will be 3 or 4 months apart. When I had bleeding trouble post surgery with the grommets, I rang our haematology department and spoke with a nurse. I wanted advice as to if I should stop daily aspirin. She took my details, said she would get a message to my haematologist and that I would get a call back, and I never heard from them again. I stopped the aspirin for a day, then restarted after hearing nothing. I surmised that a potential stroke or heart attack was probably worse than a bleeding ear! Ha, I'm still here, so I was right!

[Ebot]

Hi. Poor you! I think it would be good to get some expert haem advice before you embark on any further surgical interventions. I have PV with a high platelet count and am under Prof Harrison. She is very hot on what I can and can't have when it comes to surgery. She allowed an investigation under GA last year but only having given the surgeon a good talking to (!). I was limited to ten minutes under GA and she refused certain elements of the procedure that would have meant an additional (minor) incision. I was treated with kid gloves by the surgical team - hydrated on a drip etc etc - for something which was basically a minor investigation. Bottom line for me now is no surgery that risks bleeding without commencing drug treatment (Interferon etc ) for a month or so first. Hope you get the problem resolved and get some good advice.

[stillkicking in reply to Ebot]

Thank you Ebot for your reply. It is most helpful to hear how seriously things were dealt with in your case, and it gives me useful things to think about before I see my Haem and the ENT surgeon later this month, and more idea what to ask them.

Your good Prof Harrison sounds wonderful, I wonder if she could be persuaded to do a sabbatical in New Zealand!!

[Ebot in reply to stillkicking]

I rather hope she can't be persuaded! But I do hope you can get some good and reassuring advice. I realise that those of us lucky enough to be treated by the team at Guy's hospital in London are extremely fortunate. All the same I'm also aware that living with an MPN even with a great haem team backing you, you have to be incredibly pro active and assertive with health professionals generally. There is so little real understanding (hardly surprising) of the condition. Good luck! And congrats on the boat wins!

[bordeauxgirl]

Hallo SK, What a difficult time you are going through, I would suggest that you immediately ask to be referred to someone who actually knows what they are talking about re both your problems, MPN's and ENT, my gp's is wonderful but knows little or nothing about MPN's which she freely admits. My little island can cope with diagnosing and dealing with both sorts of problems and your bigger island should be able to do that too. I visit NZ every two years and know my son gets brilliant help from all the gp's he has ever been with. You must for your own sake of health insist on seeing someone who knows more about both subjects. I don't know where you are in NZ and I know in some places are quiet remote , I was in Milford sound and was taken ill and had to be returned to Auckland to get treated, so I can appreciate the problems, but you deserve to be treated with care and compassion. Watch out this November here I come again. Joking aside I wish you all the best of luck. June x

[stillkicking in reply to bordeauxgirl]

Hi June,

Thank you for the helpful "push". I find it is all to easy to become rather passive and accepting when I don't feel well, and I find rushed doctor's appointments quite difficult, there is always too much to fit in a quarter hour appointment!! I did manage to have a helpful chat to one of the older nurses at our local GP's practice today when she did my monthly blood test, and it was nice to feel listened to and supported as I was at rather low ebb this morning!

I see that you live on the Island of Guernsey, which must be a fascinating place to be. My wife and I live about half an hour North of Dunedin, and have a small gallery in a former post office building. If you happen to be passing by our gallery door in November, do pop in and say "hello", it would be nice to meet you... hopefully I will be able to hear properly by then!

[bordeauxgirl in reply to stillkicking]

Good Morning SK, Wow you are so down south aren't you, I visited Dunedin during my all round trip to NZ in 2004 and loved the town, remember visiting Lathern Castle(if that's correct) but haven't got to the south Island since, just a long as I see my son and g.son (cant afford it ) lol. My son now lives close to Palmeston North, so getting closer. I do so hope you get treatment that will make you feel better. Many good wishes to both you and your wife, June.

[stillkicking in reply to bordeauxgirl]

Hi June,

We certainly are a long way South, some witty person once said, "Dunedin, the Riviera of Antarctica" and I've always found that amusing, especially in winter storms! Lanarch Castle is the one you would have visited. It has a stunning view from there over the Otago Peninsula. A lovely part of the country. Kind thoughts from us, Peter

[mhos61]

Hi Stillkicking,

Wow, it sounds like you're having a real rough time of it at the moment. I truly feel for you and hope that things begin to improve for you soon.

May I suggest that when you see your haematologist you should at least address your worries regarding any future treatment with hydroxy. You could also ask is Pegylated Interferon a suitable alternative in New Zealand. I have heard some very good reports on it here. Likewise, discuss the troublesome symptoms that you're experiencing and ask are they likely to be related to ET. If so, would he/she consider commencing treatment sooner rather than later to be beneficial in your case.

I think it's vitally important should the need arise to know that there's a continuity of care, especially as this is such a rare and specialised field. For many of us here in the UK we have access to a Specialist Nurse linked to the haematology department. I was given a credit size card with my Nurses name and phone number on it. I have never used it - but it's peace of mind to know I can access this service if need be. Maybe you could make your haematologist department aware of this service and ask could something similar be implemented in your hospital. It might well be that the haematologist agrees to a way of contacting him/her if need be between appointments. It's not good enough that you did not receive an answer to your question about aspirin and surgery.

Good Luck

Mary x

[stillkicking in reply to mhos61]

Hi Mary,

Lovely to hear from you, thank you for your support. I do hope I can try Interferon when I start the meds to bring my platelet count down, and I will definitely ask about it, especially the slow release version. I do hope it is soon as I am so tired most days now that I am finding it very hard to do any work. I feel like I have aged 10 years over night! The cat is enjoying it though because she often finds me sleeping in my chair at unexpected hours of the day, and I wake to find her curled up on my chest with her head under my chin!

I will mention the specialist nurse arrangement when I see the haematologist. I am not sure if we have enough MPNs in our area for nurses to really specialise in it, but I would have greatly appreciated a contact person that I could have talked with at times over the last 3 months, as my head was very busy with things about my condition that did not make sense to me. Happily, I have found most of the answers I was seeking from this forum, I was very lucky to find it, but it was quite lonely and tough for a while. I will also mention this forum to the haematologist in case they aren't aware of it.

[mhos61]

Keep us updated, wishing you well. 👍

[Mazcd Partner MPNVoice]

Hi Still Kicking, sorry to hear about your problems, how painful it sounds. I don't know of any specialists in NZ, but I think the best thing you can do is write down your questions before you see your haematologist again, that way you won't forget to ask something important, like what you should do about your medication before and after any medical procedure; who can you call if you are concerned about anything after a medical procedure; is Interferon available in NZ for treating MPNs, it should be available but may be known as Intron A, but not sure about the prescribing regulations over there. Let us know how you get on. Best wishes, Maz

[stillkicking in reply to Mazcd]

Hi Maz,

Thanks for your helpful​ advice, I will write things down over the next few days and try to be well prepared for Haematologist and ENT. Meanwhile I take heart in seeing that the NZ boat has succeeded in winning another 2 races against USA! Woohoo!

[Mazcd Partner MPNVoice in reply to stillkicking]

you are more than welcome, have a look at this on our website to give you a few ideas

mpnvoice.org.uk/living-with...

glad you are enjoying the races. Maz

[stillkicking in reply to Mazcd]

Thanks Maz