Hello, I am new to this group

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Hello, I am new to this group

Postby nellc4 » Wed Jun 20, 2007 4:56 pm

I just happened to find this site and this is my first post. My husband Leon has been having problems since last fall. We have just recently had a Dr. diagnose him with Yellow Nail Syndrome, which is a very rare and hard to treat disease which causes him to have pleural effusions and lympedema.
He has quite a bit is fluid in his stomach and feet and legs. Fluid pills like Demedex and Lasik just won't move it out. the plumomary Dr. told him last week there was nothing else he could do to help him. His cardiologist is trying to control the fluid which mimics Chronic Heart Failure,but his heart is pumping good, just "stiffening" some. He is also having problems with his kidneys and is having a ultrasound done Friday morning to check for liver disease and to check the fluid in his belly. I think everyone is in the trying to figure out what is going on and what to do stage.
I was just wondering if anyone else on this site happens to have the lympedema and the "Yellow Nail Syndrome"
Nell
nellc4
 
Posts: 2
Joined: Sun Jun 17, 2007 5:42 pm

Postby patoco » Wed Jun 20, 2007 11:46 pm

Hi Nell :)

Super welcome to our family. :!: :!:

I don't have yellow nail syndrome, but due to primary lymphedema and secondary lymphoma I have had horrible problems with pleural effusions and abdominal fluid. I was in the hospital close to two months in Nov/Dec of last year because of it.

Initially, the docs did what is called a thoracentesis to remove the fluid.

http://www.nlm.nih.gov/medlineplus/ency ... 003420.htm

Last year, the lungs (especially the right one) began filling up every few weeks.

At that point they did a pleurodesis

http://www.nlm.nih.gov/medlineplus/ency ... 003420.htm

http://www.pulmonologychannel.com/pleur ... ment.shtml

This has helped somewhat, but doesn't appear to have been totally successful.

While in the hospital they gave me injections of lasix and I continue to be on the oral tablet 3x per day.

What may help in conjunction with this is what is called diaghragmic breathing exercises and stimulation of the lymph nodes.

The breathing exercises helps act as a "pump" to assist in fluid circulation and the lymph node stimulation helps keep the nodes clear.

If he has not been to a certified lymphedema therapist, it might be good for him to see one as well. They would be able to teach him this first hand.

I wish I had more to offer, as this seems to have been the only things that have helped me.

My fluid collection is much less now then it was.

My very best to you and to him!!!

Pat
patoco
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Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Thanks Pat

Postby nellc4 » Thu Jun 21, 2007 5:59 pm

Thank you Pat for your response. I am printing all this to have on hand. We will look for the therapist. We are in South Carolina so I will have to search for one.
Right now Leon's fluid seem to be in his stomach area, feet and legs. He has some around his heart and lungs, but seems to be breathing ok right now except when he trys to walk.
He is on Demedex because he is a diabetic and the Lasik works on his kidneys to hard. He had been is hospital twice in last 3 mos. The first time they did realy good getting the fluid off but the last time they had to stop the IV Lasik because of his kidneys.
We have an appt. tomorrow for an ultrasound. the Dr. says if the fluid is in the abdominal wall he can get it out with a needle.
I think right now the doctors are puzzled. the lung doctor says Yellow Nail Syndrome and there is nothing else he can do for him now. The cardiologist says his heart is pumping but nor relaxing after the pumping.
He thinks he has a CardioMythropy either restrictive os constrictive, not sure which yet. This Yellow nail Syndrome is supposedly very rare and very hard to treat. It is supposed to cause the lymphadema and plueral effusions. Right now we both feel like we are on a merry-go- round and cannot get off or get any help.
Thanks for your help
Nell
nellc4
 
Posts: 2
Joined: Sun Jun 17, 2007 5:42 pm


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