Purple Toe outcome.

[azaelea]

Hello friends. First let me thank all who replied to my previous posts . Your good wishes gave me a boost when I really needed it. I am pleased and relieved to tell you that my toe has now healed and has been pink again for about 10 days. I saw the Vascular surgeon on Wednesday who confirmed that the scan had shown a narrowing of blood vessel above my knee and he thought a clot had formed there and a small fragment had broken off and gone down to my little toe. This had happened because they took me off aspirin about 4 weeks before because of a GI bleed. He said he would have done an operation (mentioned aorta) but as things were alright now and because of risk with my age he would not. He has discharged me with instructions that I MUST keep taking the Clopidogrel and also keep the platelets down which I will certainly adhere to as far as I am able. I certainly don't want to go through that again. This just warns us that we must keep watch on our MPN's and not let them kick us in the teeth! Keep taking the tablets or injections! Hoping you are all keeping well and safe . I'm still shielding and will be my own counsel when to stop.We did finally manage to see our first new Great Granddaughter last weekend when we had a distance visit from Granddaughter. She was born at very beginning of lockdown! Best wishes to all, Fran

[ja66ck]

So glad that you finally have resolution on this. It's been a long time coming. God bless!

[Ebot]

So glad you have resolved this. Just pleased you got some proper attention. I was quite concerned but didn’t want to sound alarmist in my posts! Enjoy your new great granddaughter. Congratulations.

[beetle]

I am still struggling with my toe. After reading your post I think I should maybe take it more seriously. I had thought it might be a fungal infection but continued treatment has not really resolved the issue

[azaelea in reply to beetle]

Maybe you should have your toe looked at to be on the safe side. Hope it goes ok and they can sort it.

[lizzziep]

That's brilliant news. I am still trying to speak to a real person re my blood in urine problem, apparently I will get an appointment within the month (won't hold my breath) all I get is answerphones at the hospital and nobody calls you back. I haven't had anything back from the ultrasound so am oresuming no news is good news. On another good news front, my eldest son wasn't well, high temperature etc, had the covid test and it came back negative, so that's a relief and he's much better now.

[hunter5582 in reply to lizzziep]

Sorry to hear about the hematuria. Causes can range and it may be something minor, but not something to ignore. There is always a written report from a ultrasound that you can access. If it is not posted in your patient portal on-line, then you can call and just ask for a hard copy. Sometimes you have to be persistent, but the report is out there somewhere.

Hope you get answers ASAP.

[lizzziep in reply to hunter5582]

Thank you, I’ll keep trying ! It’s a few weeks since the incident, nothing since, but that doesn’t really mean anything, so obviously still a worry.

[azaelea]

I really wish you could get some satisfaction regarding your blood in urine problem. Hoping an appointment comes through for you soon. So glad your son is alright. What a worry that must have been for you! xx

[lizzziep in reply to azaelea]

I’m going to keep trying! A lot of the departments at the hospital that were closed seem to be opening again. So maybe staff will be returning too. 😁

[hunter5582]

Glad to hear you have both an answer and some relief. Hoping proper treatment will prevent future incidents like this.

So glad to hear the happy news as well. Grand-babies are a wonderful blessing!

All the best to all of you all.

[krotsida]

It happened to me for the same reason!!

He cut the doses of aspirin down to 3 instead of 7 weekly doubting the effectiveness of it on ET.

Result Erythromelalgia and blue toe.

{This just warns us that we must keep watch on our MPN's and not let them kick us in the teeth! } IS THE ANSWER!

Wish you a nice week.

Anastasia

[azaelea in reply to krotsida]

Thank you and wish you pleasant week too. Fran

[mhos61]

Very pleased this has been resolved. X

[paintbox]

Such good news about your toe & great grandchild! Such a relief that you persisted! Really a good lesson for us all. We know our bodies best as we monitor the signs and symptoms of change every day! All the best to you.

[JaK2ET]

Although weeks behind with reading everyone's posts (I'm the MPN snail/tortoise), I am pleased to hear that you had good news on all fronts. I agree with you that we must keep watch on our MPNs and not let them kick us in the teeth. What a pity we can't kick them in the butt instead! (Though that could cause a painful toe as well ... )

Good luck!