Angioplasty with PV JAK2+

[Chez1947]

Hi again, I was diagnosed with PV JAK2+ about 8 weeks ago, leading up to this I had a blood clot in my toe so also had to see a vascular surgeon, I had a CT scan about 6 weeks ago, I didnt get called back to discuss it just a letter through the post this morning saying I have to have angioplasty I am getting really scared now, I was just about coming to terms with the PV and now this, has anyone else had to have angioplasty and be honest is it painful.

[lizk1993]

Hi Chez

Like you I am PV JAK2+. Had a heart attack in 2004 and whilst in hospital, I was given an angioplasty with a couple of stents in a main artery in my heart. Didn't feel any pain whatsoever. Found it quite fascinating actually, because, if you want to, you can look at the screens and see the progress of the wire going through your veins (x ray type image). If that's too much for you, you can just close your eyes and relax. Genuinely, no pain.

Wishing you all the best

Liz

[Chez1947 in reply to lizk1993]

Thanks for replying Liz helped put my mind at ease x

[Nickthedevil]

Hi Chez

Liz is absolutely right. I also had angioplasty with two stents fitted in 2015, and there was no pain at all. The worst part was the cold, as apparently they have to keep the theatre very cool while doing it. You will be fine. Karen x

[amalekh]

Hi Chez,

Same here, I had Budd-Chiari 9 years ago, which is clots in the liver. No pain with Angioplasty nor with the stent.

Good luck.

Cheers,

Malek.

[hunter5582]

I am also JAK2+PV and had to have a heart procedure. Mine was a catheter ablation for atrial tachycardia. Was conscious for most of the surgery and got to watch what was happening on the monitor. It was fascinating. Very mild discomfort - no problem with it. It was great to be awake because I could participate in making decisions about the procedure on-the-fly.

Did I understand you to say that you found out about needing the angioplasty in a letter? That is appalling! The level of negligence speaks poorly for the health care provider and is truly unacceptable. I would find a different doctor and/or hospital system. I would not want to go somewhere that treated me that way. You deserve high-quality care from providers who demonstrate compassion and support. Hope you find that. This is particularly important with a co-occurring condition like PV. I had a very negative experience with a surgery by a doc who paid no attention to my co-occurring MPN and did not advise me how aggressively he would pursue this surgery. Amongst the negative outcomes was a raging case of reactive thrombocytosis that put me back on chemotherapy for a year. It is important to know that anything that triggers bleeding, tissue damage or inflammation can cause reactive thrombocytosis on top of your PV. You really need a high-quality cardiologist/surgeon who will work with your hematologist to take good care of you. I found one of those for m my heart surgery - sure wish I had one for the other surgery. Sorry for the long rant - but this is one of those issues that really gets a burr in my britches. We all deserve to be treated with compassion by high-quality medical providers who look at the whole patient and everything needed for an optimal outcome. That is what you deserve - hope you get it.

[Chez1947]

Yes Hunter I just got an appointment through the post, to go for pre op assessment and then the surgery. I will actually be on holiday on the 1st July, so I phoned and he said go for pre op anyway and he will find another slot for me. I will be ok flying I hope will ask when I go. I will be having words with them about the lack of information.