Question for those with Primary Lymph.

[PamelaS]

I have heard several people mention that they have full body lymph. In that case where are doctors/technicians able to take a blood pressure on you or draw blood for laboratory tests?

I have enough of a problem with one arm unavailable to them and cannot imagine in what position this places you.

Thanks guys and please don't feel I'm just being strange - I really stated wondering about this.

Pamela

[patoco]

Hey Pamela

Not being strange at all Actually very good question.

My right arm is still "fairly"" normal, so I do allow BP tests on that one.

But, both arms (arnd legs) are stricly out for blood draws. For me, I am fortunate in that I have a chest port. All draws, chemo, IV's etc are run through that.

Once, when they couldn't get it to work, they acatually took blood out of the jugular. now that was quite an experience.

There are wrist-band BP machines now that are available that have much less pressure then the old style used in the upper arm. For some, those have been safe to use.

I think it pretty much depends on the state/stage of your LE.

Sometimes, too, you have to make exceptions. When I had my lung procedure done in January, the docs insisted that in case of life support means etc, that they also have a running arm IV. It was a tough decision, but I did let them use my right arm....but...only for the duration of the surgery.

Pat

[xshlynne]

I have heard several people mention that they have full body lymph. In that case where are doctors/technicians able to take a blood pressure on you or draw blood for laboratory tests?

I have enough of a problem with one arm unavailable to them and cannot imagine in what position this places you.

Thanks guys and please don't feel I'm just being strange - I really stated wondering about this.

Pamela

My lymphedema manifested when I was 14 - full right side. No doctor ever told me anything about blood pressure or blood work and when I look back at my medical records there are notes like "swelling, likely of no significance." So I had blood drawn in my right arm for more than 20 years before I finally got hooked up with a lymphedema clinic. Still today, the only place lab techs can find good veins is in my right arm - crook of my elbow. Last year when I was in the hospital for cellulitis, it was the only place they could find a vein for the iv. So on occassion I will let them stick me there. The only other place they've been able to find veins (sometimes) is in my left hand - which I hate, but I'm getting used to that.

[ChristineKeenan]

I have full body primary lymph. I have them use the cuff on my lower arm if necessary, but bring my own wrist cuff to appointments or to the hospital. I usually will go back and forth between the two so I don't overuse one area. As for blood tests, they can't get anything out of my arms anymore - strictly out of my hands. If they feel a great spot in my arm, and it's a good day, I might let them try it, but it usually ends up in the hand ( and have them use a butterfly - NOT a full needle). Sometimes they don't want to take the time to use a butterfly, but instist on it.

The last time I went into the hospital my doctor found out that they tried several times to get an IV in and told them to get a pick line started (I had no idea they could do that). Throughout that entire 10 day stay, they used that pick line for blood draws and for shots. Whew, I looooooved my Dr that day LOL and now that I know we can do that there will be no hospital stays without it! (I thought the only other thing you could do was a port, which I wouldn't mind either!)

Hugs,
Christine

[Wendy]

Even without Primary Lymph, pick lines are a god send. I was blessed with pitiful veins that collapse or just refuse to give up blood. First time they suggested the pick line I was petrified but once it was in place it was so much better than them digging around . Unfortunately they still drew blood from my other arm but my IV remained constant with the pick

[patoco]

As my situation has changed, so too have the tools that help me get through these tests.

The arm swelling got horrendous as did my entire body swelling. They had to take out the pic line and instead put in a chest port. They needed to anyway as I was going to be going through a long period of chemo.

I now have had my port since 2007 and not one bit of problems at all - zero. I love it. I do have to watch my arms - still - as they swell periodically. My left one is doing that now. Blood pressures are only taken in the right arm - non in the left and absolutely NO blood draws or BP tests in the left arm.

Christine, where on your hands are they able to draw blood?

Good discusion, BTW. This is something a huge number of us deal with and any input is so valuable.

Thanks!

Pat