The Good The Bad and The ugly

FLU SHOTS, trusting doctors, stomach swelling, compression garment fitting, perception of lymphedema, anger, shoulders, shoulder blades, pantyhose, benadryl, TB test, shaking leg

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The Good The Bad and The ugly

Postby Cindy » Fri Mar 21, 2008 1:15 am

I guess I should start with the bad and ugly. I have been to see my lung doc. He did some tests and he says I have Restrictive Lung Disease. Thats the bad. The ugly is it was caused by a drug that was supposed to help me. Instead it will kill me. That drug is Amiodarone HCL. I have a friend who took this same drug for only one month and it affected her sight. I can't walk more than 50Ft. I am on oxygen all the time now. I have had to get a wheel chair. The good thing is we could not afford to by one so the lions club loaned me one. I have a friend form church who comes to help clean house for us. I may sound like I am giving up but I tell you I am not. I will be free to get out now with this chair. It has been to long since I was able. We are haveing a ramp built so I can get outside to tend to my flowers. That is good. That is so good :D I think the lymp has moved high up in my stomach. I think this adds to my problems. I haven't yet figured out how to pop a wheelie . May be I don't want to we will see. :lol: I would like to say I hold the drug companys responceable for this disease. I wish they would be more careful about what they sell to us. My druggest said you have a 10persent chance of getting this disease. Well I say that is to high. :evil:
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Postby patoco » Fri Mar 21, 2008 5:54 am

Hi Cindy

Here's a big big hug to ya :wink: .

Sounds awful what you are going through and I can sure identify with you both in terms of the lymphedema and the lung.

I agree about the drug companies too. All too often during the last couple years, we have seen severe complications from far to many drugs that were put out there without, in my opinion, proper testing. What angers me is that we, the patients are the ones paying the price for this garbage. I always wonder what in the $*#*%* is the F.D.A. doing with our tax money. is there no one that is there to protect the public? :twisted: :evil:

See if you can learn self abdominal lymph massage for the lymph that is moving into your abdomen. Also, do regular exercise including breathing exercises to help move that lymph. Abdominal lymphedema is horrible and can make your life miserable if nothing is done.

The real caution is that with the Restrictive Lung Disease and the abdominal lymphedema, it is going to be absolutely imperative that they keep check on the fluids in your chest.

My lungs now fill up every three weeks and there doesn't seem to be a way to stop it. I went through a pleuerodesis in January '07 in hopes that would help. It did, but only in a very minor way. What has happened to my lungs is that they have been so scarred from the fluid, that I show the same patterns as someone with cystic fibrosis. The lungs are also so damaged now that even when they empty them, the lungs are not able to fully expand.

The result is that about every three weeks 2 1/2 quarts of chylous fluids are removed and, guess what? I too now am oxygen - 24/7. I have little tanks I take with me when I am able to get to the store, go to the doctor etc.

Within the next month, the doctors are going to install what is called the
pleurx drainage system. This page tells about it:

Denver BioMedical ... heter.html


I dread it because having a permanent "hole" in my side presents a significant possibly for acquiring an infection, but at this point, there just isn't any choice in the matter.

So far, I have avoided having to get a wheelchair, although I'm sure it would help my mobility.

Like you too, one thing I sooooooooooo miss is my gardening. I miss having a yard full of flowers, butterflies and hummingbirds. :cry: :cry:

Hang in there, my friend and remember, we are here for you :!: :!: :!:

Comrades in the battle :!: :!:

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The Good The Bad and The ugly

Postby Cindy » Fri Mar 21, 2008 2:36 pm

I am sorry that you have to deal with this to. So far my doc is just upping my water pills. At first it seemed to help some. But not all the way. I have more test to go through. Ugly. I don't like to go to any new doctors. They know nothing about Lymp. and think they know it all. And they push it aside as if it was no more important then the flu. Just loose weight and take water pills and it will all go away. :evil: I am a little worried about my future here . I don't know what I will have to endure. I just know I won't like it and it will cost us a lot. Pain and money. Well I see my lung doc. April 1st. We will see what comes next. I don't blame you for not wanting the procedure you must now have. Please let me know how it goes.
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Postby joanne johnson » Mon Mar 24, 2008 11:08 pm

Hi Cindy,

I am sorry that you are having so many problems with your lungs and everything else. Drug companies should be held responsible for these damages.

On the more positive side... I am glad that you can be more mobile with the wheelchair. Spring is here and your garden is waiting for you to plant those those flowers which you will enjoy all summer.

I am also happy that you have a friend who comes to help you clean. I wish I was your neighbor so I could also give you a helping hand! Try to keep up that positive attitude, you are doing a great job. Happy Spring!
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