Sever lymphedema and pleural effusions

[queenphoton]

I have been here before and now I'm back. My 85yr old father is really being hit hard with pleural effusions. He started off about 40yrs ago with a swollen left leg, then in time it crept into his right leg, now both legs (calf) measure about 25". They are so big. Now, 1 yr ago they ruled out that is heart was causing any problems with the fluid, but they did mention a small pulmonary hypertension issue, but not too bad or causing his shortness of breath.

Well, in the beginning of Sept he was admitted to the hospital with jaundice, due to a non functioning gall bladder. Soon after that his blood pressure was going too low so the Dr. took him off of his Aldactone and he only took Bumex for his water pills. About two weeks ago his breathing was so bad I took him into the ER and they did a thorancentisis and that really didn't help too much, but he was still off of the water pill. Soon, within one month he gained 18lbs and his was swollen all over. He went back on the Aldactone and only lost 5lbs in one night.

He went to the cardiologist and he still doesn't feel that his fluid around his lungs is heart related and mainly coming from his lymphedema, but they are to repeat his echocardiogram again this Wednesday.

So we now have a man that cannot get around due to his sever shortness of breath which no one seems to have an answer for and it's killing me to see him unable to breath. With the repeat Echo, we will re check his heart out and see what this Dr may say. I'm also hoping to get his pleural effusion taken care of again and maybe that will help him out.

Any thoughts or suggestion will be great, just tired of watching him suffer with the shortness of breath and getting no answers what so ever. I'm just plain fed up!!!!

[patoco]

Hi Maryann

I just can't believe after all this time that your dad is still not getting the understanding and treatment he needs. It just literally makes me want to go through the ceiling.

You know, with all my medical problems, from hereditary lymphedema, massive infections, lymphoma - there was nothing that really destroyed my quality of life and the ability to do things like these pleural effusions have done. It literally totally robs you of every bit of energy and strength and will you have.

i don't want to encourage anyone to be rude with a doctor, but at this point I think I wouldlook this doctor square in the eye and say "You know what doc? I really don't care what you think, what counts is what is in the medical literature and it is packed with tons of information relating to this and to the point that lymphedema CAN cause pleural effusions."

It seems clear to me that this cardiologist hasn't even bothered to try to get information. When a person presents with
pleural effusions, it is critical that they do all those cardiac function tests. They did this with me as well. But, when the tests came back ok - doesn't it seem that the doctor would at some point try to think outside the box and find out what else is causing it? I would think he would be at least interested in finding out the validity of LE and lung fluid.

See if you can print out the page I mentioned before:

Lymphedema Pleural Effusions

http://www.lymphedemapeople.com/thesite ... usions.htm

OK, he probably doesn't think a page by a patient is worth its' salt.....that's fine, but I only did the intro. All the other information that is in that page is written by doctors. At least he could/should listen to them.

If he would Google "lymphedema pleural effusions," he would find pages of information relating to it.

I really really understand your frustration and share it.

You know, my oncologist is one of the most respected oncologists around when it comes to lymphoma. But he has no problem at all calling the doctor that I went to for lymphedema. Infact, neither does any of my other doctors. They all work together on my behalf - and they all will listen to me when I tell them about lymphedema.

i wish there was more I could do - the only other thing is that if this doctor refuses to even try and learn about LE and lung fluid, I think I would get my dad out from under his "care" and get him to another. How can he watch your dad go through this and not do everything possible to help?

Grrrrrrrrrrrrrrrrrrrrrrrrr

Here's a big hug your way - and please, give your dad my very very best

Pat

[queenphoton]

Hi Pat,
Thanks for you answer, okay, as of today we got all the Docs in order and they are now in agreement that his pleural effusions are from his lymphedema. But what to do now? We did get him so O2 and the oxygen might be helping a bit. I do also think he has pulmonary hypertension to an extent that is also causing some breathing issues. But that hasn't been totally confirmed except from the Echo he had done of his heart.
So, what/where do we go from here? They pulmonologists wants to do that scarring procedure, shooting the talc in there, not sure what that will really do, where will the fluid go? Too many questions.

Any thoughts, thanks

[patoco]

Hi Maryann

Whew....that's good to hear. Finally an agreement on what is causing the fluid.

They did try the talc procedure on me in the right lung and with me it didn't work. It was the strangest thing. One night when I rolled over in bed, I actually felt the ling and lung pull apart. It really didn't hurt, just the strangest sensation.

They then continued draining the lung at the hospital every couple weeks. Since continued drainning like this can also eventuall present problems, they wanted to find another solution. Plus, it seems each time it was done at the hospital, it became more and more painful and the final time, it was really awful.

A device called a pleurx catheter was installed April of 2008. Since your dad is 85, I'm not sure about the procedure and how it might be for him. Basically, they make two sall holes on each side, run a narrow tube through one, take it through the lung cavity and then bring it out the second hole. Same procedure on each side.

What this has done is enable me to drain my lungs at home every several days. There is a pressure bottle that you hookd up to the tubes and drain about 600ml from each lung every time you do it.

Thus far, it has been a real blessing for me and has made a significant differencee in my ability to "enjoy" life - and has caused absolutely no problems, no infections etc.

I am also on major diuretics every day as tests indicated a couple years ago, I have almost no lymphatic flow through the right lymph drainage area or through the thoracic duct.

http://www.denverbio.com/patient_pleurx_catheter.html

http://www.denverbio.com/physician_pleurx_catheter.html

Pat

[queenphoton]

Thanks Pat
We are going tomorrow to get his effusion drained and will go from here.

His oxygen has helped him from the huffing and puffing he's been doing. So he has had some relif.

thanks again,
and I'll be in touch
mary ann