Log in
Sticky Blood-Hughes Syndrome Support
8,554 members8,671 posts

APS and a chest port?

I'm just wondering if anyone on here has sticky blood and also has a chest port? I've tried looking it up and didn't find much about it....

My INR likes to jump all over the place and because of that I've been having to get it checked anywhere between 2-5 times a month (on top of regular blood work). When I went to get my INR checked today I was told that I won't be able to use the portable INR monitor with the finger prick. Now I would have to get my blood drawn each time and sent to the lab for a more accurate result.

I've been poked and prodded for around 8 years (I'm currently 22 years old), and now it's gotten to the point where nurses are struggling to find a good vein to draw blood out of. I have a lot of scar tissue on the bend of the elbow, and now my veins keep collapsing everywhere. The nurse told me it's the walls of the veins deteriorating. They have tried everything from heating pads, to elevation, to different sites, to having the IV team come in. So what should be less than a 5 minute blood drawn, turns out to be an hour ordeal. I also drink more than enough water so I'm not dehydrated.

I know that clots are possible with ports, but I'm running out of IV access points. Because it's so painful, my anxiety jumps through the roof to just get my blood drawn and it was never like that before.

I was just curious if anyone who has APS has had a port and what their experience with it was? Or if anyone has any ideas on what I could do?

35 Replies
oldestnewest

Hello and welcome to our Forum as I see that you have recently joined us.

Im sorry you are finding things difficult at the moment. Can I ask are you under a specialist for this condition and do you know what antibodies you were positive to when you were tested for APS?

One of the antibodies LA seems to create a problem with keeping INR steady, we don't know why but those that are positive to it do seem to find that keeping in range can be difficult. Added to that the finger prick tests can vary between the vein draw by anything up to 0.5. It is advised that finger prick tests and vein draws are done side by side so that a pattern can be seen as to what your particular difference is between the two.

So for instance, if your finger prick test was 3 but your vein draw says 2.5 then thats 0.5 difference, over a period of time if this was done you would see if it was always 0.5 different or if it averaged out at something else. This allows people to continue to use the finger prick tests so that they can learn to discount the difference and always know that whatever their finger prick test says they have to increase it by whatever their vein average result was. Then every few months the vein draw can be done to just check that the difference is still the same.

The alternative for you would be to switch to LMWH like Fragmin, as many of us have had to do who cant tolerate warfarin for different reasons. To me, I think its a bit extreme to be doing a port when there are other not so invasive ways of getting anticoag meds.

I hope that helps.

2 likes
Reply

APsnotFab and I wrote these answers at the same time I now see and is about the same thing. LMW Heparin(Fragmin) can also be used instead of Warfarin.

Kerstin

Reply

Back in November I had pain in my shoulder and shortness of breath and it turned out to be a pulmonary embolism with a pulmonary infarction. I tested through the roof with the LA and my D dimer test. I was in the hospital for five days recovering because the clot was so big. And during that time I went through 7-8 IVs because the veins kept collapsing.

I'm currently seeing an amazing hematologist who mentioned something about it before, I just didn't think I was giving blood that often to justify one. I'm also seeing my rheumatologist.

They did the side by side comparison during my INR check and the lab said my INR was 3.1 and the rapid test said it was 4.2 so there was a significant difference. I asked about continuing on the rapid test because it took them over an hour to find a good vein, and they spoke with my hematologist and she told them that she was more comfortable getting blood drawn each time.

I see her in two weeks to discuss things further, but we've already talked about switching to LMWH and she voted against it because of the risk for osteoporosis. Mostly because I'm so young and would be on it forever. And So far warfarin is doing the job.

I just don't know what would be best because getting blood drawn is just a hassle. It's been nearly a year since I started on blood thinners, and the longest I've been between checks was 2.5 weeks.

Reply

I do understand your predicament but you must remember that there are many of us on LMWH. Ive been doing it for 6 years and Prof Hughes has a patient doing it twice that, whose husband is a pharmacist. There is no long term studies that show that you get osteoporosis. This was something that was caused by unfractioned heparin but LMWH is different. I have had bone density scans done and my hip scores have improved, certainly not gone the other way!

You are correct in that you are young and long term options seem daunting, however having a port long term is an invasive option that I would personally leave as a last resort. In your position I would go with the LMWH which will free up your life from the testing and food/drink restrictions etc. It can be monitored and Im sure that in the future newer anticoagulation drugs will come out which will allow you to switch. Don't look at it as a life long solution but as something for now to give you a better quality of life AND allow your veins to heal. Thats my opinion but of course you must discuss the merits of this with your Dr. In the end its your decision as only you can decide what is best for you and your life.

2 likes
Reply

Thank you so much for the information! I've brought up LMWH with my doctor before, but she just didn't want me on it for that long. But I'm going to try bringing it up with her again.

I'm thinking perhaps where I live (the US), the regulations are just a bit different and that might be why.

I'm hoping to avoid a port as much as possible, so I'm keeping my fingers crossed 🤞🏼

Reply

I suspect its more of a cost thing as warfarin is very cheap and LMWH not so much!! If you let me know in what part of the US you are we may be able to suggest someone who specialises in this disease and may be more willing to try different options.

I think your first priority is to saving those veins whilst being properly anti coagulated. In any case they should be giving you LMWH to supplement your warfarin when it dips below your range. As Kirstin says if you are to stay on warfarin you need to insist on a much longer assessment of the two blood checks, having both finger prick and vein draw at the same time. That way you can see clearly the difference and discount it. Using a home monitoring machine can also allow daily checks if necessary. They can also combine anticoags like the heparin and clopidogrel or aspirin.

You do still have options without going that port route!

1 like
Reply

The answer you have had from APsnotFab is excellent with great detail and accurate information. I do suggest you perhaps show these replies to your doctor and alert them to he fact that we are linked to a great new charity which is promoting and supporting the correct medical care for our complicated condition. It would be sensible for you to be switched to Fragmin, bearing in mind that you are now experiencing difficulties with you Warfarin etc.

Also the home monitoring kit should definitely be considered for you, to go on as you are is not fair and a chest port appears to me far too drastic.

MaryF

Reply

Hi,

I must say I have not heard of chest port but as you know we are not medical trained here. We only know our illness.

I wonder if you are Lupus Anticoagulant positive and have a Specialist who knows autoimmun illnesses and who has had several HS/APS-patients before you and thus knows what he is talking of?

I am on Warfarin with an INR of 4.0 and selftest in Stockholm and I am positive to the antibody Lupus Anticoagulant which can make it difficult to selftest as the fingerprick-value of the blood can be (in my case) much higher than the vein-value of the blood taken at a certified lab. Also the numbers of the INR can change a lot so you must take fingertests very often. I test every second day to follow the INR closely.

If you are positive to LA and selftest it is very important that you doubletests the two values (vein contra finger) before you start to see that the difference is always THE SAME. If I have an INR of 5.0 with the CoaguChek XS-machine I may have 4.0 in the vein it you take it within 3 hours of time that is.

Why I write all this is, that if you do not have a Specialist I wonder why they will not let you selftest often at home to know your fingerprick-value. Especially if you are not LA positive it is even easier. I wonder if that has something to do with the chest-port?

I am sorry for this long post but I just had to ask you this out in interest and as I know how very important it is to keep our INR steady. This illness is not so well-known by nurses and Doctors throughout the world. But from your "name" Brittyann I think that you might live in England and that sounds good in my ears.

2 - 5 times a month are not often to test the INR. Did you have a Coagu-Chek XS-machine at home? Perhaps I have misunderstood something?

Best wishes from Kerstin in Stockholm

Reply

Yes, I am lupus anticoagulant positive. I see both a rheumatologist and a hematologist that have handled patients with APS before. They're both pretty amazing and I'm lucky I found such good doctors.

I'm living in Colorado in the US so maybe it's a bit different here, but I asked if I could do the at home test and they told me I wouldn't be able to because The difference between the self test and the blood draw is too much. So they've eliminated the self test out.

The only reason they have brought the chest port up is because how difficult it is to find veins that want to work for them. I see my doctor in two weeks so I'll ask more about it then. I think they're just playing it on the safe side because I'm so young.

Reply

But to know the difference you have to take a lot of doubletests so you know the difference is the same. As I told you there is a big glap between the two but the difference is the same with a discrepence of 0,2 - 0,3 which is ok.

I doubletested for half a year before I started selftesting I think it was. Also I have today a book where I write all the machine-tests and what I eat of greens and if I change my Warfarintablet with perhaps only 1/4 of a tablet twice a week (up or down). I now only take a vein-test every second or third month and then i doubletest of course and write it down.

It is difficult but Warfarin is the best we have in the long run today so well worth a try. So many here are on Warfarin and some of us selftest every second day to feel secure.

At the moment I have tested every day as the INR has been erratic. Also if you have a high INR one day the difference between finger(machine)-test and vein-test at a lab is bigger when the INR if high. So you need a lot of strips. If my INR is under 3.5 I take a Fragmin-shot. My target range is between an INR of 3.5 - 4.0.

Kerstin

Reply

In terms of osteoporosis, there are a number of ways to protect the bone density starting from taking Calcium to actual treatments to improve bone density. Have you had a bone density scan? This is the only way you will be able to monitor your bone density.

With good wishes,

Ros

1 like
Reply

I believe that ports represent a significant risk for creating a blood clotting event and which for our wacky blood is exactly what we need to avoid. I think the others here have presented great options - if only Drs might consider them but of course they are hampered by the requirements of legal systems in each country.

1 like
Reply

I hope you see dr Jill Schofield in centennial Colorado. She is probably one of the best APS specialists in the USA. What is your INR target ?

They discussed placing a port into my aortic vein also for the same reasons as you. The antibodies make out veins very diseased. I have learned with me ( through my vascular surgeons scans) often it's because the veins above where they are drawing have clotted.

If you ever need an IV started, make sure you go to the heart cath lab. They can do a Doppler sonogram to start the IV! Much much better.

1 like
Reply

My doctor is trying to get me an appointment with her but with my insurance it's a little tricky.

My INR target range is 3-4.

It was my doctors idea for the port because I get to the cath lab and even they told me that the amount of scar tissue and veins that have just deteriorated is just too great at this point. She talked about doing a heparin flush twice a month and just watching it closely. I now will have to get my blood drawn around 3-6 times a month (because of regular blood work too) and it's just too much.

I have a panic attack the minute they can't find one and I feel so bad for the amazing nurses cause they're sooo sweet.

Reply

You poor thing! You have my sympathy. I still have that problem with any blood test and have been known to have it taken out of my feet (much more painful!). I am on Xarelto now and only have to have 2 blood tests a year to check kidney function but I now ring up to see if there's one particular girl on and she's great. She uses a fine butterfly needle rather than a needle stick but I think I can hear her heart sink when she realises who wants her!! I had one last week and the first nurse asked if she could have a look but gave up very quickly without trying to jab me and called 'my' nurse :)

Unfortunately indwelling catheters or chest ports come with their own set of problems but if I go to Hospital I get a PICC line as after several attempts at getting a cannula in, I tell them to go away!

Reply

Yeah I tried doing xorelto when I first had the pulmonary embolism and wasn't diagnosed with aps yet. I ended up getting 4 more clots in my lungs three weeks later so my doctor put me on warfarin (which is working amazing for me and that's one reason she doesn't wanna switch me).

They've tried everything for me, but the minute they stick me the vein collapses. And then they send me to the cath lab for a better look and they struggle. Eventually they find a decent one, but it's always so painful because I have ALOT of scar tissue😖

My doctor is just worried that in an emergency they wouldn't be able to get an IV started well.

I've been hospitalized twice in eight months, both for a five day stay. And each separate time I was there I went through five or sixIVs (after seeing the IV team) because my veins would collapse.

Reply

Sounds exactly like me. About 6 or 7.

Reply

Yeah, in November I was hospitalized for the pulmonary embolism, and the veins would collapse. I went through 6 IVs in five days. Then two months ago I was hospitalized again for five days, and again went through about 6 IVs. My arms looked like I was in a bar fight 😖

Reply

I'm no doctor, but I agree with above concerns that a port may increase your chances of a blood clot. This site's collective "we" have found that a lot of doctors fail to distinguish between apples and oranges. We take blood thinners because we have sticky blood, not because we have a sticky spot in our circulatory system, such as a stent or an erratic heart valve. Therefore, blood thinners are much, much , MUCH less likely to cause major bleeding events in us. Medical schools seem to instill a profound sense of fear of the potential bleeds associated with warfarin. But again. We're not common 'run of the mill 'horses' taking thinners. We're the zebras. So your doctor may fear the fingertip/ veinous draw discrepency for this reason that your INR may soar with bleeding consequences. But to repeat: major bleeds for APLS patients are so rare thatI i have never read of one on this site.

Do no harm! But I think the potential harm of having a port, or ending up with veins that collapse is going to me more harmful than finger tip tested warfarin or one of the easily injectible drug options.

( And have you tried a gluten free diet? After I went GF all my APLS diagnostic blood values fell from high to what one hematologist called " boring." I persist with the warfarin because I remember with great fear and trembling what those mini strokes did to me! But I am now : A, asymptomatic with an INR of only 1.7, and B, my fingertip test is now identical to the veinous draw ( or at least, was the last time we compared.) ( And this makes sense since my ANA is now 'boring.')

1 like
Reply

It depends, Gina. Many here are LA anti body positive. The discrepancy between finger prick value and vein value can be as high as .6 of 1 point. This has been me on several occasions, ( last week twice - my doc is now ordering in vein draws three times a week) and we are not even sure if I'm LA positive or not. This makes a huge difference as to whether or not I clot or not. The difference in whether or not I may loose my arm or not, I'm reclotting so fast. ( or for some, stroke, etc.)

Don't misunderstand- I'm a HUGE proponent of having a home meter. I'm simply saying I've learned the importance to saying that you MUST do vein values with that regularly- especially if you feel symptomatic. ( I've been surprised.)

Home test coagucheck check kits are a life saver, ( Dr Hughes speaks to their importance but also states it is critical to do side by side vein value checks as often as your hematologist advises, for the reasons I just mentioned. I am a patient of Dr Hughes so can speak for him in this matter both clinically and on a personal level as my INR is libale with dire consequences.)

I think going gluten free is very important in bringing inflammation in the body down. I'm excited studies are so prevelant, and am really pleased you have had such personal positive success with it. Love to hear your hiking adventures! ❤️👍🏻

1 like
Reply

Yup, same here. That's exactly why my doctor is ordering the vein draws because it's just too much of a difference to say with confidence.

Even if I were to do the home tests, I would still need to supplement with vein draws and unfortunately my veins just don't wanna work. They use everything on me to get blood, and it still doesn't work. Eventually they get lucky, but it's always after an hour of trying what should've taken 30 seconds...

And I'm young, I'd like my veins to heal for a bit lol.

I'm going to get some second opinions and see wha people think, but I think I'm backed into a corner here. Regardless I'm having to get my blood drawn even if I home test... and that's the issue.

I so wish my body would let me hike. I used to be so active before my health deteriorated 😖

Reply

KellyInTexas also please read: info may interest you🤔.Hello, welcome to the boards. Sorry it took me so long to respond here as I have been away and not on my computer. A chest port, aka central venous access device, allows for blood to be drawn from a large vein through a quarter size device that is implanted beneath the chest skin off of a large vein and allows for blood draws to be drawn without all the "search for vein problem(s)". Another option can be a PICC line which is a thin catheter that is inserted through a peripheral vein of usually the arm and fed into a large vein into the chest, this catheter stays outside of the skin as a thin tube with an end cap usually ending outside of the antecubital area. Whereas, a central venous access device feels like a sponge and is placed under the skin of the chest wall. Both provide for easier blood draw access without all the discomfort or difficulty of the blood draw. Both can be risky: blood clots, infections, etc. You may be able to find more information on these when searching for these names: central venous access device,or PICC line ( peripherally inserted central catheter). Good luck, I hope you find the additional information you are looking for. You will see they are inserted under fluoroscopic xraying so mistakes in placement can be avoided. Check things out. Any questions pm me and I will try to help, Cindy in NJ

Reply

Brittyann did you see my response

Reply

Thank you so much ☺️ my doctor has talked to me for awhile about the possibility of one, just because my veins are so shot.

She told me that I wouldn't be able to do the PICC line because I have some issues with my arms so it would just be uncomfortable. My doctor is just worried that they're doing more and more damage to my veins and it is stressing me out and making my anxiety flare.

My doctor told me about increasing the heparin flushes so that way the risk of clots subsidies a bit. I'll find out more next week ☺️ I have multiple medical conditions that I have to get blood drawn for so it's not just my INR getting checked.

Reply

Yes- I read this- you posted somewhere else? I responded this morning because I thought you were trying to get my attention:)

1 like
Reply

See Janetorlando9311 post about her chest port🙂, Just click on this blue highlighted area and options for her posts should come up. Cindy in NJ

Reply

Thank you so very much! That was so helpful and everyone here has good ideas that I'm going to discuss with my doctor.

Reply

Brittyann who is your doctor and where are you located? I am compiling a list for those of us in the US, please help, Cindy in NJ

Reply

I'm located in Fort Collins, Colorado currently. My hematologist is dr miho Scott and she's incredible. One of the first doctors to look at me like I'm not insane. And my rheumatologist is dr. Truong at national Jewish health is Denver.

Reply

NAT'l Jewish Health is really starting to come on board with APS. I had read something posted by them, if I find it I will post about it. Good for you, thanks for replying!

Reply

Anything come of it Britt?

Reply

Yes! I had the port placed at the beginning of October, and I LOVE it. I’m getting my INR checked every week and it’s working perfectly and healing great. My doctor agreed right away that a port was the best option. I’ll post a picture of it on my profile. ☺️

Reply

Great I knew you would!

Reply

It’s just so much easier! And I barely notice it anymore. Occasionally I’ll bump into it, but only the incision is still tender.

Reply

Great... Love it when things workout. I’m so very glad for you’re success!

Reply

You may also like...