Blood pressure and blood draws

RebeccaA

I developed lymphedema along my right arm and hand after a mastectomy with lymph node removal in 2014. It has become manageable over the years. I use a FlexiTouch a few times a week, do manual lymph drainage massage, and wear a sleeve with glove when doing any vigorous exercise (which hasn't been often) or repetitive activity. I also avoid having my blood pressure taken or blood drawn on my right arm. Now, a new primary cancer has been found in my left breast, and I will be having a mastectomy next week. This means I'll be facing the risk of or likelihood of developing lymphedema on my left side as well. My question is how do I handle blood pressure and blood draws going forward?

Thanks for any advice!

Spookiesmom

Yep, that’s me. Both arms. I just let the vampires stick my “better” arm, and do BP on it too. Some have done BP on my foot, and the reading is WAAAAAAY off. And I tell them what my normal numbers are. As for labs, doesn’t seem to bother my arm.

I know I’m going against usual wisdom here, my LE doesn’t bother me all that much. I don’t wear sleeves and gloves, too hot and itchey here. Don’t use the pump either.

MinusTwo

Rebecca - sorry you are having to start over with the other breast.

I was in heaven when I had my port for blood draws. Now I only allow blood draws from my ankle/foot. It's a major pain because in the 4th largest city in the US with a major class medical center - I can only find one place that will do it. I do allow short BP readings on my 'less' affected side - but only with a manual BP cuff. That's another problem since many places either don't have manual anymore or the nurses don't know now to use.

For the surgery, make sure they start the lines in your foot ankle. Tell them ahead of time & then insist. Sometimes anesthesia techs don't know how or don't do it well. The first time I specified ankle only, the guy stuck me 5 times & couldn't get a vein - and I have prominent veins. That's when Emla Cream (lidocane) or freezing is useful. Don't be hesitant to ask them to call an OR nurse to start the line. Also make sure they know to put the BP cuff on your calf for the surgery - not your arm.

Good luck. I'll keep you in my thoughts.

SpecialK

Rebecca - that is a bummer and I'm sorry you are facing this. I had bi-lat SNB, ALND on the cancer side, and have bi-lat lymphedema with the cancer side considerably worse. I allow BP and needle sticks in the "better" arm as well, but have found that juvenile butterfly needles and manual BP are substantially gentler and request those when possible. My arm that I allow this on has not gotten any worse and this has been my practice for 10 years. Not endorsing it as a plan for anyone else, just reporting what has worked for me. It is a problematic situation with limited options. For surgery when an automatic cuff is used it has been placed on my ankle. For an ankle stick for IV you might request a specialized machine (most major hospitals should have them, and there are a number of different manufacturers) that helps whoever is setting the IV see the veins, it is like a portable ultrasound machine. It usually has a dedicated operator who travels around the hospital with the machine helping with those who have difficult veins to access - they are sometimes referred to as the "stick team" in my experience. There are some stretchy sleeves that identify lymphedema arm(s) (see link) that are good for reminding OR staff - my hospital actually had them stocked and they were red - easy to see, and make sure they put a sign above your head in pre-op, and your room if you remain hospitalized. If you bring your own warning sleeve to surgery make sure to leave it packaged until you get to pre-op so they know it is sterile and can be worn in the OR, but also check with your hospital to see if this is a product they might already have. I have found that even if your LE information is in your records it is unfortunately often missed by staff, so it is important to be proactive and keep reminding everyone. Wishing you the best.

https://www.tlcdirect.org/Lymphedema-Alert-Sleeve.html?did=93

https://www.g-sleeve.com/gsleeve.html

MinusTwo

I forgot the juvenile butterfly needle. Thanks Special. Oh - and I always take a Sharpie or Magic Marker and write in BIG LETTERS up & down my arms before surgery - no sticks, no BP. If nothing else, it makes the docs laugh. And that's in addition to the wrist bands that I wear.

RebeccaA

Thanks everyone. After the initial shock, I was handling the new diagnosis pretty well until until this morning when I started researching the implications of now having both sides compromised. I've always had difficulty with blood draws since I was diagnosed with lupus at age 13 and came out of the hospital bruised along my arms, hands, and feet from blood draws. It stresses me, and I've had many meltdowns at labs and just walked out of places that could not get it in a couple of sticks. My right arm used to be the go it place, but I've had to adjust to the left. So, now I am sitting at my desk at work having a meltdown about this and worrying about what the future holds. I know I am probably blowing it all out of proportion, but right now I can't help it. I need to call the doctor's office but I have to first get a grip on myself before doing so or else I know I'll just start crying and sound unhinged.

MinusTwo

Rebeca - so sorry to hear about your anxiety. Take a deep breath. Get up and walk around & get a glass of water (too early for wine). Like Special, I've let them do BP on my "better" arm. So far I've had no problems. I have foot draws only, but did let them put contrast in my "less affected" arm for an MRI last year. I will say I did take 1/2 a Xanax first. Hang in there girl.

RebeccaA

So, I called my surgeon's office to tell them about the right arm lymphedema and ask what to do about the IV, etc., for surgery. I did not get any good answer. Basically, they might put it on the good side, which is the same side as the surgery or they might go ahead and try on the right side anyway. She suggested I wear my compression sleeve the few days before surgery to help the lymphatic fluid - whatever that means. I asked about the foot and was told that it would be up to the nurse starting the IV and whether she/he can find a vein. Needless to say, none of this reassured me. Tomorrow I see the plastic surgeon who does the expander and will get his take then.

Spookiesmom

Do you have a port? If so, problem solved. My last surgery was on port side, they were able to use it.

RebeccaA

So, I called my surgeon's office to tell them about the right arm lymphedema and ask what to do about the IV, etc., for surgery. I did not get any good answer. Basically, they might put it on the good side, which is the same side as the surgery or they might go ahead and try on the right side anyway. She suggested I wear my compression sleeve the few days before surgery to help the lymphatic fluid - whatever that means. I asked about the foot and was told that it would be up to the nurse starting the IV and whether she/he can find a vein. Needless to say, none of this reassured me. Tomorrow I see the plastic surgeon who does the expander and will get his take then.

RebeccaA

My port was removed when I concluded Herceptin sometime in 2014 or 2015. I do miss it, though only the oncologist's office used it for blood draws.

MinusTwo

Rebecca - don't ask... TELL them it will have to be your ankle. It is your body and I'll bet you're paying for the surgery & treatment. Don't be shy!!! Get the hospital anesthesiologist on board too.

SpecialK

Rebecca - you may get more traction by talking with the pre-admission folks at the hospital rather than any in-office staff at your BS and PS, since they are not the ones present during surgery or in pre or post op areas. If you want an IV in the foot it might be worth trying to arrange that in advance so they are not surprised by that request on the day of surgery. You can also request a consult ahead of surgery (maybe done by phone or telemedicine) with the anesthesiologist at which time you can discuss your concerns as well. I have done that before and found the anesthesiologist quite willing to discuss what would happen during surgery from his perspective, and answer any questions. Definitely be assertive - you are the one who has to live with anyresulting complications - this is the time to get definite answers.

DebAL

Hi Rebecca, As a pre-oo nurse we need an order from anesthesia to start in the foot. Foots are off limits if you are by chance diabetic due to risk of infection. If you go that route, ask for a nurse that has experience starting IVs in the foot. Also ask if they can use lidocaine regardless of where they start the IV. Its a quick sting but worth it! Best wishes. Hang in there!

RebeccaA

Thanks for all the advice. It's much appreciated!