Having aps with a chest port

[Janetorlando9311]

I have had a chest port and have aps since April. It is wonderful now I don't have to worry about my veins blowing all the time.

[Lure2]

Hi Janetorlando,

Why did you get a chest port? Are you on Warfarin and perhaps Lupus Anticoaglant positive?

Are you treated for your HS/APS by a Specialist who has had several autoimmun patients with our illness before so he knows what is is talking of and gives you the right treatment?

Best wishes from Kerstin in Stockholm

[Wittycjt]

Glad you are pleased, hope all stays well for you. Cindy in NJ

[Wittycjt]

There is another person thinking about this,,, I hope she reads this!, Cindy in NJ

[KellyInTexas Administrator in reply to Wittycjt]

Yep, I think you have this Texan in mind!

I did Not want a chest port, but my nurses at my hematologists want it for me because I have to have the blood draws so often. Interestingly, just yesterday I believe another person posited a question along these same lines- not announcing that she had one, but rather her doctors what's thinking to place one and she was concerned about clots forming at site.

It turns out ( since seeing a vascular surgeon and having such intense detailed sonograms of all the collateral veins that supply flow in arms... under his care now with regular checks... making sure we don't loose this arm) that the collaterals above antecubital space are clotting also in superficials off and on. Like cephalic, for example. Even in my good arm! This is why the vein could " look good" but not flow or give blood. Nothing.

We are having a rough time- but then they re- open! Keeping INR at 4.2 - somewhere in there. 4.5 even. But more damage was done along the new learning curve.

I kept saying my veins were stinging and burning - docs were saying They did not know why. Small vessels were clotting off first. Then big ones. But you need small ones to work around damaged big ones. If you loose those networks, you run a risk of loosing limb.

I'm very upset about this. Too soon to say but I kept saying my veins were a huge problem. Scans only look for larger vessels. By the time those clot / open / clot / ( the cycle does damage to vein and scars it, making it ever more narrow, and therefore easier to clot in the future...) it can be a risk of "too late."

[Brittyann in reply to KellyInTexas]

Hey I posted about getting one as well! My veins are so shot from being poked all the time, to the point where I've been asked if I'm an IV drug user. 😑 which I've never even touched drugs.

I've been to the cath lab and IV teams have seen me and they all suggest getting a port placed For my comfort. Cause it's just terrible having to go through clogged veins and scar tissue 😖

[KellyInTexas Administrator in reply to Brittyann]

Yes. I had thrombocytopenia at 18 months of age and almost died- so a lot scars at that time. My arm was on a " board " / strapped down. I was in some kind of super oxygenated tent over my hospital bed for 6 weeks. Constant / IV " stuff" and then constant checks there until age 6 years old- then through all my miscarriages/ and 2 successful pregnancies.

[Brittyann in reply to KellyInTexas]

Yeah, they were confused about what was wrong with me so unfortunately I got poked a lot for the last ten or so years. Now that we know it still won't stop. I had a pulmonary embolism that caused a pulmonary infarction (or death of lung tissue) in November, and then two months later I had a early miscarriage. So I finally got diagnosed, but this scar tissue is just too much. and I know there are risks to the port especially with aps, but I'm so tired of it taking an hour to find a vein then it hurting like non other

[rlupus]

I have one of these to but I am on my 5th port in 4 years as they kept blocking finally the one I have now was put in September last year and consultant recommend using a higher dose of heparin flush and thankfully this seem s to be keeping the line clear just hope it continues as I have a lot of medical health problems and on a lot of medication ,

Rachel

[Lure2 in reply to rlupus]

Hi Rachel,

Hope you have a very nice and knowledable Doctor who knows our illnesses (you have both APS and Lupus I know) by having had several patients with Lupus and APS before you.

Best wishes from Kerstin in Stockholm

[KellyInTexas Administrator in reply to rlupus]

Yes. APS antibodies, according to my doctors, tend to lower our white blood cell counts chronically. This can leave sites like ports a bit more vulnerable. This might be something to keep an eye on also? This is one reason my neurologist and internal med would rather my heme not insert a port.

[Brittyann in reply to rlupus]

Thank you so much! My doctor has been wanting to put a port in me for awhile, but now it's just more necessary. She talked about doing more frequent heparin flushes, but maybe just doing the higher dose one would be best 🤔

[Brittyann]

I have been looking for someone that has a port with APS! My doctor has been discussing getting me one because my veins are beyond shot (takes out an hour just to find a semi decent vein with the IV team).

My doctor expressed the worry and risk for additional blood clots, but she thinks I'll be better off with a port. Can you give me your take on yours?

[rlupus]

This is what happened to me it was taking over an hour to find a vein but as soon as they did they would collapse I just could not keep going through it especially twice a week so I took the risk of having a port but its the best thing I have even though I am on my 5th and have to have them put in under general anasetic but I have a fantastic surgeon , He gets very worried when they need changing as I have chronic obstructive airways, and other health problems so I am a challenge for them but touch wood I am still hear and doing ok , as I said they now flush it with extra heparin every time and it seems to be keeping the line clear, good luck what ever you decide,

Rachel