Ports?

[Bluetoday1]

Good morning,

I have Polycythemia Vera. I am having regular phlebotomy and do not have the best veins. I am wondering if anyone out there, who is having phlebotomy, had a port put in instead of having arm phlebotomy and how that is working out for you?

I welcome all thoughts/comments about this.

Thanks

Roberta

[Kari1961]

Hi Roberta, I also have PV and terrible veins.

I was offered a port, but after careful consideration/I did a lot of reading up on it, opted against having one.

I decided to go down the medication route instead, and for the past two years have been taking Hydroxycarbamide... which thankfully works well with no side effects.

Sorry I can't be of any help to you and I hope you find someone on here who has one.

[Bluetoday1 in reply to Kari1961]

Hi Kari,Thanks for the quick reply. I have had a lot of people tell me that it is not a good idea but had a hard time with phlebotomy yesterday which is why I am thinking about it again. I cannot tolerate Hydroxycarbamide and have also tried Anagralide so the only thing left is Jakafi which is very expensive and I am not eligible for any assistance-just slightly over the income level for that.

Thanks for your help,

Roberta

[Kari1961 in reply to Bluetoday1]

Sorry to hear that Roberta.

Do they perform the phlebotomy with help from the Vascular Scan team? If not, this may help.

It worked for me a few times as they could find/use 'hidden' veins which were deeper in my arms. Unfortunately, as I was then having to have them every 6 weeks at that time, those 'good' veins then became fragile and scarred.

[hunter5582]

Even with good veins, the skill of the phlebotomist makes a huge difference. When you have problem-veins the skill level is critical. Before opting to take the intrinsic risks of a port, i would suggest trying to arrange for the most skilled phlebotomist to perform the procedure and see if it makes a difference. You may have to be quite assertive to make that happen but it could be well worth it.

[beetle]

Hi. I think the risk depends very much on what type of port you are being offered. I have a portacath which is completely under the skin and has to be accessed with a special needle. Because it is completely under the skin the risk of infection is minimal if it is accessed as a sterile procedure. I have mine for regular blood transfusions rather than phlebotomy and because I have terrible veins. For me it is a godsend and it is now going on nine years with no problems except immediately after it was put in. I can do all the usual things like bathing and showering without any concerns. The only small niggle comes with car seat belts but I put a clip on mine to keep it in the right position

I hope this is useful information for you

Best wishes, Jan

[Wewo01]

Hi Roberta,I was initially diagnosed with ET a little over a year ago and put on Hydrea. My hematocrit remained high between 47 and 50. New Dr. revised my diagnosis to PV and ordered phlebotomies. My veins are small and deep. When they sense a needle coming at them, they roll! I swear they are sentient! I have gone to have lab draws and had to leave and go back another day because no one can hit my veins.

I just had a PICC line placement a week ago. It is a bit inconvenient but for me was the right choice. My phlebotomy followed. Via the PICC they can’t use the collection bag, so 50 ml syringes had to be used with a nurse manually pulling the blood. It took an hour and 15 minutes. I plan on keeping the PICC line for as long as I need it. Honestly, for me it’s much better than sticking me half a dozen times, blowing my veins and not being able to draw any blood. The last 7 people who have tried to hit my veins have failed! I have made sure I was well hydrated and even applied heat to my arms to help bring up my veins prior to blood draws. Still no success! So PICC was a good choice for me.

Good luck and keep us posted!

Kim