So this is a bit of a saga I suppose…
In September 2020, I had a subclavian DVT. Two failed rounds of thrombolysis and 8 balloon venoplasties later, I was discharged on lifelong anticoagulants, but only half dose as I weighed about 60kg at the time which is the cut off for full dose. No vascular follow up, as they don’t do that, it would seem.
Since then, occasionally my DVT symptoms flare up, my arm is heavy and a bit weird, I can feel the change in my breathing, and I can see the collateral veins across the left (affected) side of my chest more clearly. I’ve been told this is normal and will likely happen for the rest of my life. I whack on a compression sleeve and carry on, and it normally clears in a few days.
In October 2023 I was getting more symptoms than I felt was reasonable. With my GP, I increased my anticoagulation does to full adult dose cause I also now reliably weigh about 62-63kg so am above the cut off. This seemed to help and things settled.
Now, because I’m on lifelong anticoagulation I also get an annual full blood count and stuff to check that my liver’s holding up ok. These have normally been in November, but with the change in dosage seemed to get forgotten.
At some point over the winter, I developed an annoying rash on one side of my neck that didn’t respond to my eczema steroids, but it was winter so I didn’t think much of it at the time and just kept throwing moisturiser at it.
By 23rd December, I was feeling slightly off enough that I started wearing my Garmin watch all the time. Until then I’d only worn it during the day, and was trying to wean myself off it (because I get a bit obsessed by data, and not necessarily in a good way!) so had reduced to only wearing it for exercise really. But my breathing felt kind of DVT flare up funny some of the time, so I popped it on round the clock to check on my sats and things. Nothing wildly out of the ordinary.
Come my February repeat prescription, I decided it was time to poke my GP for my annual blood test, and I guess that’s where the current chapter really starts. It came back with abnormal neutrophil (c 15) and basophil (c 0.8) counts as well as slightly high platelets (c 500). So the tests were repeated a week later with much the same results. I also got poked to check my spleen (seems normal), and urine dipped (normal). My GP emailed haematology for advice, and they suggested leaving it for 4 weeks, then repeating full blood count and adding a blood film, LDH, B12, folate, iron profile, Myeloproliferative neoplasms (MPN) screen (JAK2/CALR/MPL) and Chronic myeloid leukaemia screen (BCR-ABL).
I made it about 10 days on before calling 111 last Sunday with an unacceptable level of shortness of breath - a sort of very heavy feeling in my chest that I can breathe past, but with lots more effort than it should take. Obviously they sent me to A&E, which was great timing in the middle of the junior doctor’s strike. All they could really do was check I wasn’t having a heart attack or a pulmonary embolism, but while they were taking blood I showed them the full haematology wishlist (thanks, Patient Access!) and they managed to get everything ordered. I can’t see the detailed test results, just the basic total white cell count which had continued to rise (was c 22 on my GP-ordered tests, and 28 on the hospital test a week later).
So my GP finally picked up all the paperwork and by last Wednesday had referred me to haematology. I’m still short of breath, and my DVT arm is doing its tingly thing, and now I’m playing the awful waiting game. I know haematology only got the email on Wednesday afternoon. I know some of the tests that got ordered take ages to come back, but ugh, I just want some answers now, or at least to talk to someone who might be able to start joining the dots. I feel a bit fobbed off at the moment because I come across pretty fit and well in general (apart from the breathing thing) and don’t have night sweats…
I’m sure everyone here’s been through the same awkward wait, but maaaaaan how long the days feel when you can feel in your body that something is going on, but you don’t yet have contact with anyone who can give you answers!
(Female, 43, Oxfordshire so will likely end up under the Churchill)
I’m working from home as much as I can, because commuting into London when climbing a flight of stairs sends your heart rate shooting up isn’t really a good use of energy, but there’s nothing else to do all day, so I might as well work while I wait for the phone call…