help! puffy for first time

Jessamine, it's scary, and no doctor is going to know how to treat it as an emergency. What you can do is drink a ton of fluids, elevate the arm, and do deep breathing and periodically raise your fists over your head and pump them.

When you get back to California, you'll need a referral to a LE therapist. 

One therapist told me that she recommends if a woman gets swelling on a plane, to walk in the hotel pool--don't know if that's an option. Pool water can reduce swelling, but no hot baths.

Here's a link to what to do while waiting for your first appointment:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting 

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;
2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;
4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;
6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;
8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Here's a a link to finding a LE therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

I know of a great LE therapist in NYC, but she doesn't take insurance, but you can call her for assistance--she's the former partner of my LE therapist and she's amazing:

Mary Read (formerly the head therapist for Robert Lerner's clinic)

19 E 71st St # 5B
New York, NY 10021-4164
(212) 396-2350 

Please let us know how you're doing

Kira

Jassamine, I'm so sorry! Don't wear the garments, as they won't fit well with all the swelling. And no ice, either, as extreme temperatures draw lymph fluid to the area. The pool is a great idea if you have access to one. Gentle arm movements in the water, especially if you're standing about chest-deep, should really help relieve the swelling. After that, try not to lift anything heavy or strain or stress your arm until you can get home and get help. Elevate your arm tonight on pillows and see how things are in the morning.

Other things to avoid right now: salty foods, alcohol.

Do give Mary Read a call, explain your plight, and ask if she has any advice for getting yourself home again in great shape.

I can just taste the panic you must feel (been there, done that, on a trip to Alaska). And like you I had a "no risk of LE" from my doctors. 

It's going to be okay, honest. Hang in there, and keep us posted.

Huge hugs,
Binney

Grrrr...I am so angry on behalf of all breast cancer patients that we have to deal with this sh** on top of everything else!!!  And that they told you you had almost no risk makes me see red.

I am so grateful to Kira and the other gals who helped with the LE part of this journey!  I went and got measured before surgery thanks to this awesome board.  I owe so much to all of you.

Kira also has great advice for preparing for a trip.  I know this is premature in your crisis, but the thing I'd be worried about is this might make you gunshy--try not to let that happen.  Travel is so empowering, and important to our sense of independence.  There are people better versed here, but I eat low sodium, drink a ton of water, do diaphramatic breathing, and fist pumps before I fly.

I am super-pissed you flared with a sleeve--how were you fitted for it?  By a trained LE therapist? Mine told me to call her if I got a flare.  Perhaps yours can refer you to someone in NYC?

Jessamine, 

Jessamine: if the fingers are puffy, it's because they weren't compressed with just a gauntlet, and the fluid went there. In the future, you'll need a full fingered glove.

The reason not to wear compression is that poorly fitting compression can trap fluid. 

Mary Read is a LMT (licensed massage therapist) not a PT, but she's great and at least two women from these boards use her. She charges up front, as insurance doesn't cover a massage therapist, but she's highly trained. She's also an expert in fitting gloves.

I do understand your desire to wear compression and drive that fluid out of there. If you wake up today, and it's a lot better, you can consider it, but again, poorly fitting compression can trap fluid.

Fingers swelling up like sausages on a plane, with a gauntlet, is an all too common story.

Pitting edema is actually a "good" sign--it means it's reversible. Just scary as hell.

If you can get a good glove for the trip home, and have someone check the fit of the sleeve, that would be a good goal.

I do agree: it took me a couple of years to fly, and I fly wrapped. But it is liberating to get out there.

Kira

I am one of the women who has seen Mary Read. I like her and wish I lived closer and insurance covered, so I could see her more.

Mary managed to fit me into her schedule within a couple of days of me calling her (as opposed to the 2 month wait to see a within network OT or PT LE). She no longer orders garments, but refers people to someone who takes insurance. (I have not seen this person.) She does evaluate the fit of current garments. (What she told me was that with my increased swelling, my existing garments didn't fit and to stop wearing them and keep my arm elevated and see whether it helped. It did.)

Here's my advice: call her and see if she has an appointment. My experience the first time I saw her was she evaluated, did MLD, and wrapped. If you respond well, maybe she could wrap you right before your flight home. You could also use the measurements she gets to order some off-the-shelf garments. There HAS to be stores in NYC that carry a wide range of garments. Alternatively, there are a lot of online companies that sell them. (I've had good experiences with BrightLife.com. They have a 30 day no questions asked return policy and they are very fast on delivery -- usually free shipping gets things to me within a day.)

Mary's in NYC, so she's not cheap, but she charges a fraction of what a OT/PT LE charges, and seeing her might give you some tools to deal with LE until you can see someone when you get home. Good luck! KS1

Jessamine, how are you doing?

Chiluvr, by DMX do you mean bilateral mastectomies?If so, the risk is lower on the side where no nodes were removed, but it's still possible. There are several of us here with LE from a prophylactic mastectomy. Glad you'll be seeing the LE PT next week. Let us know how it goes.

Be well!
Binney

Jessamine, I don't know how long you have before you fly home, but you could try to find an Isotoner therapeutic glove. They're not pricey, and you might be able to find them somewhere close:
http://www.totes-isotoner.com/product/isotoner/isotoner+fingerless+therapeutic+gloves.do?sortby=ourPicks

Just stay well hydrated, do some deep breathing, and raise your arm at intervals and gently pump your hand.

When you get home, do get any member of your medical team to give you a referral for an evaluation by a qualifed lymphedema therapist, so s/he can help you figure out a plan for future travel that really WILL let you feel "normal" again. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Having a swelling incident like you had may be an indication of pre-clinical lymphedema, also called Stage 0 lymphedema. Now is a good time in intervene and get help, because if you get help now it will likely never progress to the constant condition some of us are dealing with. Without treatment, though, lymphedema progresses, and then it's harder to manage on-going.

I'm so sorry about the disappointment of trying to get your life back and then having this happen. Please relax and enjoy the remainder of your vacation and look forward to getting the help you need so that this never happens again.

Gentle hugs,
Binney

Binney - what do you think of Jessamine finding an UnderArmour shirt to wear for her flight?  I have truncal and arm LE and use those shirts for daily wear, but also for flying to keep the swelling down. Is there a down side to that for Jessamine?  I am not the expert, but I cannot think of a down side to wearing a compression shirt for flying.  

There's a PT named Ting-ting Kuo at NYU's Rusk institute whom you might want to consult if you can work out the insurance issue: 212-263-6033, www.ruskinstitute.org.

Hi Jessamine,

I had a similar thing happen when I flew a couple weeks ago, only it was my breast that swelled, not my arm. It was really uncomfortable. I made it back home and wore a sports bra for a couple weeks and that really helped. Met with the radiation oncologist today, and she agreed it was lymphedema. She told me to wear a sleeve if I fly again, and a sports bra that is a size too small. My swelling went down on it's own, fortunately, but it was certainly unpleasant.

Karen

Look, no one wants to have lymphedema, no one.

A recent paper put out by leaders in the field describe the condition really well, and talk about how by the time people swell, it's fairly progressed, and that early treatment can help keep it at the sub-clinical stage.

http://www.avonfoundation.org/programs-and-events/lymphedema-information.html

Early diagnosis, early treatment, and awareness are key to preventing lymphedema from progressing.

Kira

Jessamine, the sleeve and gauntlet are apparently not a great fit for you and may make things worse, so if I were you I wouldn't wear them again until a therapist checks them out. Stick with staying really well hydrated, doing regular deep breathing, and elevating your arm whenever possible (at night on pillows). Here are some gentle exercises you can do, in the order given:
http://www.aurorahealthcare.org/FYWB_pdfs/x21084.pdf
(At the start it says to "clear lymph nodes" in neck, axilla and elbow, and since you haven't been shown how to do that just skip it for now.)

Please don't fuss about it so much that you get no enjoyment out of your vacation. Our quality of life it important too! Do what you can and look forward to getting it all under control once you get home.

Keep in touch and let us know how we can help.

Gentle hugs,
Binney