Wednesday, 17 October 2018
First steps...
And so it's Wednesday again. I didn't post a blog last week as, well, I didn't do much, my leg seemed to be fairly painless which is obviously good and the last visit to the hospital the counts were as high as they have ever been 791, jaw droppingly high!! They've never been above the 500s before so have 2 weeks in a row 500+ is unheard of. I asked if there were restrictions on what I can and can't do with the clot but as long as I didn't go sky diving or bunjy jumping I should be ok to do whatever I like. Time to get the walking shoes on again!!
I went out for a walk on Thursday evening, it was lovely, bats flying around and a very young Cresent moon, beautifully clear. I probably pushed it too much was going well and took a break in burger king and on home, but my foot and leg were swelling up almost like a tourniquet was around my leg. Obviously this was the clot causing this. I put my foot up for a while and then on to bed.
My next walk was on Sunday for only a half hour or so but I was drained on Sunday so couldn't really do much. Over the weekend work on some 3d stuff, I started with normal images and was very easy to do. The next step was 360 3d, not quite as simple. If you look at someone looking the same direction as you the left eye is left the right eye is right, they turn to face you and their left eye is to your right and their right to you left, so the lenses switch. So I was able to edit the photos so they did just that but then at the sides there would be no 3d and so I came up with an idea to take another angle so it would focus on the sides. Which works but the stitching isn't good. More work involved.
Anyway on Tuesday, last night, I went for another walk, not as long as the first and longer than the 2nd, just over an hour, it felt great and I felt good afterwards too.
And then this morning, I woke up around 4 and couldn't get back to sleep, when I finally got up I went to take my fondaparinux injection (I always remember the name as Fonda paradox,as I'm fond of a paradox, the whole situation is a bit of a paradox, low platelets anticoagulants and a clot, only me) and after it bled, it hasn't bled before, not lots but still, some blood. Then I nipped my hand which has cut a bit also not bad but worse than I would have expected. And now my nose is tingly a sign of the counts being low, I've no rash or anything but they're certainly not 700 odd 🙈 should be getting my bloods taken soon, should have already had them taken tbh as I've already been sitting here for over half an hour 🙄
Of course as I was writing that I go and get my bloods done, there was a bit of seepage after the bloods were taken so now just to wait for the results, they have 1mg tablets for me if I have to reduce them if the counts are high... Or I may need the n-plate again and not the 1mg tablets, or I may need both!! Cliffhanger ending!!! What will the outcome be!!?
Wednesday, 3 October 2018
Through the roof and beyond
Thankfully after the scan yesterday talked about in 4 years, I was back at the hospital for the weekly checks and to get the N-plate subcut and most likely talk about the clot and get a plan of action in place on what can be done to help get rid of it.
The usual going in getting bloods taken and discussing with the nurse about different things and issues that had come about over the week, then waiting around for an hour for the results to return.
It seemed to be much busier than normal on a Wednesday, not quite sure why but didn't really affect things for me as I'm there first thing.
Got called in to see the doctor and we were discussing various things and said to him the pain in my leg had subsided a bit and I expected the counts to be fairly low as it's normally not as bad when they are...
Well... They were not just through the roof they were floating around the far side of Jupiter, they were 503!! The doctor said this could be due to the inflammation in my leg and that it can cause the platelets to increase although it's hard to take the result as a truly accurate one. The N-plate was reduced last week and no real reason for them to increase by near 400. So the N-plate was reduced again this week.
Then on to the clot... I was expecting the drugs to take this into account so I was surprised he spoke about reducing them before talking about this. He believed that something desperately needed done about it and has given me a blood thinning drug, which for someone with ITP should not be taking, I'm not even allowed to take aspirin.
So I am now on drugs to increase the platelets so my blood DOES clot and another frog to STOP my blood from clotting...
But as said something had to be done to help clear this. The thinner is called fondaparinux and is supposed to be just a preventative dosage and hence his willingness to reduce the N-plate. If it was a higher dose of the thinner he would have kept the things the same, but having a platelet count of 500 odd is also not very good and needs to be lowered.
Once done with the doctor I went back to wait for a bit more before getting the N-plate, finally got that and headed off to work.
I had to return later to pick up the fondaparinux and be shown how to use it, it's a subcut, the same as the N-plate, which I would give myself most weeks anyway, thankfully this new one is prepared so I don't have to mix it up each time and just inject it. Seems straight forward enough although the needle isn't as sharp as the one with the N-plate so struggled a bit to get it through the skin, needs more of a sharp push. I was given 40 days supply of this and was told I'd be on it for at least the 40 days I'm guessing it could be a fair few months with how big a clot it is and from what I've read it'll be 3-6 months.
So... Now.... *Shrugs* I've no idea what to expect, interesting times... And hopefully it works and things start to settle.
Wednesday, 3 October 2018
4 years
Four years ago today I got the all clear for the lymphoma, a couple weeks ago I had a CT and things where all still clear. Yesterday I had an ultrasound and this is where today's post begins.
I have had a painful leg for a fair few months now and after finding a bit of a blockage in my lung they wanted to rule out a clot. I turned up and waited, finally taken to the room and asked to lay on the bed, quite a few minutes pass and they come back and get me to move to the next room. It was warmer which was good.
The radiographer came in and recognised me, I said it's probably with being around the hospital so much, she seen that I had had a CT scan a couple weeks ago and went off to read the report about it.
When she came back she said that she done a scan on me about 4 years ago on my liver and kidneys. 4 years, I either made a good impression or a really bad one.
She started the scan working down my thigh and said there are no problems from the hip to the knee, asked if I'd move to have my legs hanging over the edge and started to check below the knee. She checked a couple of spots and then asked me to lay on my back again and started to scan the thigh again, obviously there is a problem between the knee and the hip...I asked what she had found or looking for but didn't give a straight answer. She checked the sound in one of the veins ---------- none, definitely a problem, said she wanted to get a second pair of eyes to look over her shoulder... Yup a problem, doctor came in and started discussing the flow or lack of in the vein.
She showed him and then they needed another pair of eyes so went and got another doctor, while one doc was getting another she continued with the scan down my calf that all seemed to actually be normal.
So the 2 doctors come back and the radiographer are now here having a look at my leg, finally now they include me in the conversation asking a few questions and finally getting round to say "as I'm sure you're aware from what we've been saying you have a clot in you leg that runs from your groin right down to the tri-something-or-other in the saph-something-else, basically from my hip to below my knee and asked if I was going to the clinic right after this, told them I'm back again tomorrow to see them. The docs left and radiographer said that I can get ready and head on which I did and headed over to work.