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!