Hello friends
I am programmed tomorrow for coronery stant, is there anyone who has done the same surgery and how it went, it hurt, what to expect next, do I take plavix?
I've been diagnosed with JAK2V617F and hypertension, taking xydroxy 3 times
a week+aspirin.
Sorry of my lack of english and thank you all.
I have not done that procedure but did do a successful catheter ablation of the heart, This procedure is also done through a catheter inserted into a major artery (femoral). Installation of a stent is a standard medical procedure these days. There is a very high success rate. Given the presence of the JAK2 mutation, it is very important for you to have the procedure as you would be at increased risk, so glad to hear you are having it done.
There was no significant discomfort with inserting the catheter. I was conscious for most of my procedure. There was also no discomfort afterwards. I am sure your team will be alert for your risk of thrombosis and hemorrhage. Your hematologist should have already consulted with the cardiologist/surgeon about your particular needs.
All the best with your procedure. Please do let us know how it goes.
Thank you hunter 5582
unfortunately no one consults with no one I have to ask all three doctors on my self.
You are most helpful and I appreciate.
We often have to make the consultation happen. We often have to be our own case managers, ensuring the communication occurs. I will sometimes have a provider write a letter to the other colleagues. Sometimes we have to be very insistent and many doctors have no idea what the impact of the MPN will be on the treatment they provide.
Haematologist have no experience I am the only one he got with mpn and 1 week ago a new case came on, when the second person complained about being tired then he believed me!!!!!
It helps to be believed. Hard to imagine how a hematologist would not know about fatigue since it is the most common MPN constitutional symptom and also is caused by the meds used to treat. So it goes.
Hopefully your hematologist will be able to explain the twin risk of thrombosis and hemorrhage associated with the manifestation of the JAK2 mutation. I have found that we simply cannot expect other providers to understand this. They do not necessarily know what to do about it. That is why collaboration is so important when you have a MPN.
There is not collaboration here at all, because he dosent now MPNs
hello Krotsida, I hope it all goes well for you tomorrow. With regards to your query about Plavix and any other medication you are taking, you need to ask your haematologist about this and also discuss with the doctor who will be carrying out the procedure, they will advise you on what you need to do. With best wishes, Maz
There is not PNM specialist in Greece that I know of and my haematologist
refer me to cardiologist,as far as he is concerned is his decision.
I will try my best to get an answer to my questions from the doctor who will be carrying out the procedure as you you mentioned .
Thank you Mazcd
Hi Krotsida, your cardiology care team should be telling you what you should or shouldn’t take ahead of the procedure so best to check with them.
I had an angiogram a while ago and was told it was very possible I would have stents inserted at the same time. In my case I was instructed to take my medication as normal, including HU and aspirin, and clopidogrel (plavix), which I don’t normally take, was added in beforehand. I was told I would be continuing with clopidogrel (plavix) everyday if stents were used so it’s important your haematology team are aware of the procedure too.
As it happened I didn’t need stents and my procedure was both trouble and pain free but I had to make sure I had someone with me for the following 12 hrs and also take it easy for 24 hrs. Again, the cardiologist should be telling you what to expect and about possible aftercare if stents are inserted.
Being prepared with the relevant information from your cardiology team will help alleviate the worry. I know a few people who say their quality of life improved a lot following stenting and I hope it all goes well.
Thank you Rem 31 very much,
I was instructed to take my medication as normal, including HU and aspirin
as well and I will have to stay at the clinic overnight. Can you tell me why you had to have a person for the firs 12 hrs with you?
I was ready to come home very soon afterwards and I live alone so it was just a standard precaution. I was fine and by the evening I felt it was unnecessary, especially as I hadn’t had any stents fitted, so sent my son home! I was also told not to do anything too strenuous for around 4 days and I did obey that instruction.
καλησπερα αναστασια μου τι κανεις φιλη μου?τωρα ειδα την αναρτηση σου και σου ευχομαι οτι καλυτερο μεσα απο την καρδια μου πως ετυχε αυτο αναστασια μου?ολα καλα θα πανε εμεις εχουμε μεγαλη πιστη στο θεο και δεν μας αφηνει ετσι σου ειχα στειλει και μηνυμα στο μεσεντζερ γιατι εδω δεν πολυ μπαινω σου ευχομαι και παλι οτι καλυτερο φιλεναδα
Γεια σου Νίκο, τι να σου πω ούτε εγώ δεν ξέρω πως έγινε, αλλά φοβάμαι πολύ λόγω των αιμοπεταλίων γιατί ο αιματολόγος μου δεν είναι ιδικός PNM.
Εσύ πως είσαι χαθήκαμε ,θα σου σου στείλω το τηλ. στο μεσεντζερ ναμε πάρεις όταν έχεις ευκαιρία.
hi Krotsida Hope all goes well with your procedure. I got 2 coronary stents at age 59 and while it’s scary to think about, it was a very easy surgery. I was awake the whole time & left the hospital the next day. It’s actually how they discovered I had ET Jak2+. Right before I left the hospital they said I should see a hematologist because my platelets were extremely high & they checked old records for a previous surgery & noticed platelets were extremely high back then too. Later my hematologist told me my high platelets most likely caused my blockages. Good luck with your procedure. Don’t be afraid. You’ll feel so much better afterwards.
Should I or should I not?
Mylefibrosis and pregnancy 
Dietary restrictions.
Jak2 allele burden results
