IV and BP during procedures

gb2115

Say you need a colonoscopy or something, with nodes removed and history of lymphedema. You need an IV for meds and they have to check BP. Where do they put the cuff if there is an IV in your good arm? On your leg? Or can they put it on the same side?

I am in a scenario where I wouldn't be surprised if they recommend a colonoscopy because of history and I am afraid of that because of those reasons. I don't want arm lymphedema...so far it's only been truncal and very slight.

Spookiesmom

Before my surgery in April, I had 1 good arm. Surgery was on the same side as port, so they didn't /couldn't want to use that arm. They used the port for IV stuff. They used my leg for BP.

Prior to this, my good arm was used for lab sticks, BP, whatever. No problem.

Now I have LE in both. I've had BP done on leg, and gotten some bizarre readings. I guess it depends on the techs experience. It's good to know how your BP usually is, so if you get a reading way off your normal, you'd know and could say something.

Be aware some people will “say” they know how to access a port. They don’t have a clue. Let everyone know you have LE, tell them your fears, and what you want/need.

vlnrph

Just yesterday on my good arm I had both an IV infusion and BP check (with one of those darn machines which sometimes over-inflate and drive me nuts: when that happens, I ask for a manual reading). That has been the routine for the past year, every four weeks as an 'awake' outpatient.

Due to LE, when I've needed to be put under for a colonoscopy, interventional radiology procedure or the lengthy spine surgery I had last summer, the same upper extremity has been used with no problem. One time I took an old sleeve and wrote NO Needles, etc on it. Right now Lymphedivas has their bright yellow hospital garments on sale. They remind me of the caution ribbons police and others put up to demarcate a danger zone!

I have never had a thigh cuff or foot stick although I inquired about the latter since most of my veins are scarred and can't be used easily. I may need to get another port at some point...

Spookiesmom

Yes, that’s another good idea. Take an old sleeve, or buy one. I used a pink one I’d gotten somewhere, no needles, BP. Or just take a sharpie and write on your arm.

exbrnxgrl

I use my “good” arm for bp and use my port for everything else. About 6 weeks ago I was rushed to the ER with severe dehydration. Even though I was in a terribly confused mental state, I grabbed a Sharpie and wrote “ No BP or needles” on my compromised arm. I was lucky that the port certified nurse was available in the ER. Despite massive dehydration, he accessed my port and everything going in or out went through the port.

gb2115

So they can use the same arm for both...I always wondered about that!!!

MinusTwo

Since my port came out, I always have blood draws through my ankle. The only place I can find who knows how to do this is director of the Blood Donor/Transfusion center at a major hospital. For my last colonoscopy, I had the BP cuff on my leg and allowed them to do the IV in my 'better' arm. For my last surgery I made them do the IV in my ankle & BP on the other leg. It's certainly a hassle, but I'd rather not compromise my arms any further.

purple32too

For BI Lateral LE

NEW health issue ... MIS dx ( 3x ) and FINALLY went to Boston. They think I have FAI hip impingement.

They are going to do an ulttrasound guided cortisone this THURS
NEVER even thought until today: " They will need an IV!!!!"I KNOW they dont do blood draws from the foot there- arms ONLY there! Im guessing I am in for trouble, but pls tell me, where else could an IV POTENTIALLY go ?

Thank you!

ksusan

I have blood draws from my "less bad cancer" arm (DCIS side) and BP on the leg. I wear a "no BP/VP" sleeve on the other side (my local day hospital supplies these, or I write it with Sharpie). Let them know beforehand so they have a leg BP cuff and someone who knows how to use it. If manual on an arm, don't let anyone use the automatic machines; they inflate much higher than most people need. Review your considerations with the nurse or person managing your procedure, and ask before the procedure as new staff arise as seems necessary.

purple32too

THX
I actually acquired the LE on the R.arm from a blood draw!

Got the left from a simple LX with 2 nodes out and then just a few yrs ago, I broke the Righ humerus. AFTER it was healed, I went for a blood draw and just moments later, I noticed swelling just where they had put the tourniquet and under my elbow. Figured it would be gone in a few hrs. NADA!
My LE therapist explained that my lymphatic sysyetm is already impaired/ sluggish .. and the R arm had an insult ( the break) and they put a tourniquet " RIGHT THERE" (wherer the humerus had broken) and it was the perfect storm.

Very concerned about this IV causing a blow up. I THINK I would go with the right ( ?) since no nodes have been removed there, but I dont like any of it!

TY

Binney4

Purple, if a doctor writes "draw from foot only" on the blood-draw order, they will do it. Just don't call ahead and ask if they will because they'll tell you no.

As for other places for an IV, they can put it in your neck. It's not as bad as it sounds, doesn't actually hurt any more than an arm IV. I always enlist the anesthesiologist to do IVs in either foot or neck, because they generally have more experience with that than the nurses do, so maybe let them know in advance that you'll need that help available.

Looking forward with you to only smooth sailing!

Gentle hugs,
Binney

MinusTwo

Purple - I agree that you'll need to push. I only allow blood draws or IVs in my foot/ankle. However in a hospital it means they usually have to call an OR nurse because even the anesthesia department can't seem to get a line started. And for my every 6 month blood draws, only the blood donor/transplant department at the hospital "knows how to do it". Good luck.

SummerAngel

I have blood draws from my right arm, only two nodes taken from there, and make sure they use the smallest needle they have. Luckily I have giant veins so it's easier for them. For a while I only allowed BP readings from my leg, but most nurses have no idea how to do that and I ended up with readings that were way off. I've been allowing BP on my right arm for the past two years or so. I only allow IVs in my foot because the "injury" of an IV is longer lasting. It's not fun to have one placed there, but to me it's worth it.

Anonymous

When you speak of a port for IV infusion and BP check, is this the same port they use when giving Chemo therapy, or a different one.

If they use the same one they use for Chemo, they removed my sister's port about 2 1/2 weeks ago. Last week they told her she has lymphedema in BOTH arms.

She had a double mastectomy though only had cancer in the right breast (positive for BRCA 1 gene). Nodes out both sides.

exbrnxgrl, what if someone is brought to the ER room and they are not conscious. Do you wear any medical alerts? If so, do you use a bracelet or something that hangs around the neck?

MinusTwo

view finder - Sorry to hear about your sister.

I had a 'power port' that I kept for 2 years after chemo infusions. They used for everything from blood draws to nuclear contrast for the PET/CT. I hated to get rid of it.

Many of us wear alert bracelets for our LE. They come plain or fancy.

Below is an excellent web site with ideas, thought, training, supplies, etc.

https://stepup-speakout.org/

I got my alert arm bands from www.lymphadema.com through Pacific Medical

exbrnxgrl

viewfinder,

I confess that I wore a medic alert bracelet for many years but when it broke, I didn't bother to replace it. Since I was conscious and had the presence of mind to write on my arm with a Sharpie, the ER staff knew not to use that arm. But to answer your question, if a patient is brought to the ER unconscious, then I imagine they just look for any usable vein. I've just made a good argument for getting my bracelet replaced 😂

I'm not sure if you were addressing me regarding the port, but yes, my trusty Bard Power Port has been in place for eight years. It has been a tiny workhorse, both for infusions going in and blood draws. I am stage IV, so it's here to stay, and they always have a port certified nurse in my hospital's ER so they were happy to use it.

edj3

I'm one who wears a bracelet, more as prevention than because I have bad lymphedema.

The thing is, I run alone and quite early in the morning (around 4:3). If I were to trip and fall and knock myself out, well it would be a real corker to wake up with lymphedema issues in my arm because I didn't wear a bracelet.

I have a silicone one I wear to run in, and I have two others I wear during the day. One unfortunately has a lot of pink which I dislike even though it's the easier one to put on. I don't care to advertise my BC. The other one is a little more discreet but harder to take off.

Anonymous

Thanks for the replies. My sister has been away on a business trip. When she get's home, I'm going to get more details.

Any recommendations where to get medical alerts (emergency device)? Type?

Spookiesmom

I wear MedicAlert bracelet. I have LE both arms. This company maintains complete data on me, blood type, meds, living will, DNR, etc. The back is engraved with 800#, and some of my meds. The ID comes in many styles and prices. It’s about $50 a year for this service, well worth it to me. I’ve used them for about 12 years.

edj3

I got the silicone one and one of the more decorative ones through a seller on Etsy. I got the other through an online company that specializes in medical alert stuff.

I don't have the service Spookiesmom mentions; my decorative ones say Lymphedema No needles No BP This arm (caps means its a new line on the bracelet).

ksusan

I have stage 0 LE (that is, I am at risk because I had a little non-LE edema already). I wear medical alert jewelry whenever I'm out of the house, and I also have a wallet card. If I drop during Zumba or get in a car crash, I want medical folks to know what's going on. I didn't wear one for well-controlled type 2 diabetes, or after surgery, but was advised to do so when I started tamoxifen because of the (very low) risk of DVTs.

I use MedicAlert (www.medicalert.org), which has an annual fee, and a service called Backpack Health that's free with some jewelry ordered from a company called StickyJ (www.stickyj.com). I get most of my medical alert jewelry at StickyJ, and got a nice red metal wallet card as well. I have bracelets in silver flex band, black links (a "men's" item I took to a jeweler and had a few links removed), and cloth & velcro sports bands, as well as a necklace I wear when I fly so I don't have a bracelet over my compression sleeve. I also have a nice gold and white bracelet from Lauren's Hope (https://www.laurenshope.com/) for when I need to dress more formally. I found earrings that match, and only my PCP, who's looking for such things, has noticed that it's a medical alert bracelet, since you can only see the symbol if you look at my wrist at the pulse point.

When I was on an extended walk in another country this summer, I found a place online where I could order a thin silicone bracelet with custom printing, on which I had "VEA MI TARJETA MEDICA" (see my medical card) along with a wallet card in Spanish. What I like about Backpack Health is that you can set up unique web addresses (nice if you travel a lot, or want someone to have only some of the medical history you've entered) and it has a language toggle, which is great for international travel.

ETA:

The silver one, which I wear most frequently and which casual observers think is a watch band or bracelet, says

On the front:

[Medical alert symbol] MedicAlert

[My MedicAlert number]

[MedicAlert's 800 number]

On the back:

R: NO BP/VP

L: LIMIT USE

TAMOXIFEN, DIAB2

The information on my wallet card is more extensive.

Spookiesmom

Ksusan, yes, that’s who I use too. I’ve never had anyone call their 800, but if I face plant somewhere, I feel more secure wearing it.

Anonymous

Thanks again for all the good info.

I have a lymphedema alert for my left arm (though I have no lymphedema. In addition to what you listed above, No IVs, No needles are engraved on mine.

I take Anastrozole. I didn't know it should go on a bracelet.

Here's the bracelet I have (inexpensive). Maybe it doesn't bring enough attention to itself? The picture is downloaded from Amazon where I bought it.

This may be an old wive's tale, but I always understood that police and first responders were not supposed to go in someone's wallet. Am I misinformed?

Please forgive my ignorance on all these things. I really didn't start getting info about this until after my sister was diagnosed.

Spookiesmom

Many years ago, DDs former fiancée wound up in ER, unconscious. They went through his wallet, found DH business card, called us. So yes, they do.

Spookiesmom

ksusan

I don't think you need to indicate AIs. Tamoxifen carries a small risk of deep vein thrombosis (DVT).

MinusTwo

Here's the link to get a free 'alert' band. Not pretty, but I wear when I go to the docs.

http://www.lymphedema.com/alertband.htm

There are a number of articles & tips under the "information" tab.

Thanks for all the thoughts about what happens if we face plant at the gym. I guess I should look for a more permanent solution. And since I live alone, I should probably find something to wear 24/7.

Anonymous

Thanks for all the information! It's a bit overwhelming. Need to find out from my sister the extent of her lymphedema.

The problem with my arm band is that the red alert symbol is never on the top of my wrist and it's as tight as it can go. I wonder, if needed, if first responders, if ever needed, would look at it thoroughly. Right now I use it to remind my doctors when I go for a visit.

gb2115

Just FYI, I just had my colonoscopy and they ended up doing the IV at my wrist with bp cuff on upper arm. They gave me no trouble and when they saw my history they asked about the arm....I didn't have to bring it up. I was expecting a battle but they were great.

ksusan

If you're on the ground, who knows if the symbol will be immediately visible? First responders are trained to check your bracelets and necklace.

SpecialK

I have bi-lateral lymphedema that is well controlled (BMX and bi-lat nodes removed, more on the cancer side and LE on that side is worse) and I do have several bracelets. One is a dressy yellow gold one with a caduceus symbol and engraving that says no BP/IV/Needles, right arm. I do use my left arm for BP and IV's. I have had 16 surgeries, multiple PET scans, multiple blood draws each year, and a colonoscopy since my BMX. No additional issues with the left arm despite mild LE there. I have also had multiple biopsies, a wide excision and a MOHS procedure on my worse right arm, with no change in my level of swelling. For daily informal wear I use medical ID bracelets from Road ID, there is a lot of room for emergency contact info and also for specific medical info. I have the silicone ones with a medical alert which I like because they are easy to put on, inexpensive, and you can have several - gym bag, car, home, etc., and I use really bright colors, red or orange usually to attract attention to my wrist - here is the link:

https://www.roadid.com/pages/medical-id?ab_header=true&utm_expid=.wED1_H3vQPSwzlz7RAaoRA.1&utm_referrer=https%3A%2F%2Fwww.roadid.com%2F%3Fab_header%3Dtrue

I would caution you not to use the word "lymphedema" on your medical alert jewelry. My son is a paramedic/firefighter and I asked him to survey his crew and ask if they all knew what that was - not all of them did. The last thing you want is one EMT googling lymphedema while the other EMT is setting the IV in your arm - go with the more straightforward instruction of no BP/IV/Needles and specify which arm.