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Re: new here, husband is in the hospital

PostPosted: Sun Nov 20, 2011 10:59 am
by patoco
Hi "Hiswife"

Super welcome to our family and I also just want to mention that he is more then welcome to join as well.

I can understand wanting to protect his privacy, but it shouldn't effect his dignity at all. The only thing that can effect that would be how he handles this.

The real tragedy too is that there are many well known celebrities who are so totally ashamed of having lymphedema (LE) that they never say a word about it - and that effects all of us in getting the message out about the condition.

It sounds very much like your hubby is dealing with many of the same issues I have had to face in the last few years.

The first thing I would do is to get a referral to a "certified" lymphedema therapist in your area. They, not a doctor, would be the ones to treat him. Ironically they usually know more about the lymph system then most doctors anyway.

He must understand that there IS treatment available and unless he gets it, the lymphedema will only get worse and worse - as will the bouts of cellulitis. BTW, if he gets treatment asao, there is also a chance of taking it back down to stage 2.

Thank God you had enough good instinct to stop that one doctor from pulling off the leg skin. OMG, I can not imagine any reputable doctor proposing or doing that.

There is a surgery for scrotal lymphedema. There was one actually created some 40 years ago that is incredibly good, preserves all functions and is much much safe then the others. If he decides to go ahead on this, please let me know and I will be happy to share how it is done.

But, having said that, please - please - don't let them operate on his legs. I went through some experimental surgeries back in the 1970's and they were a disaster. I also believe part of the complications that arose was lymphoma in my left leg some twenty years afterwards.

I have never worn a kilt because of my LE. What I usually do is buy pants that are many sizes bigger then my waist. I buy double pleated ones as well as thta gives a lot more leg room. For example my waist is only about 35"-36" if that - but I buy pants with a waist size of 42. They may be a bit baggy, but they work and are comfortable.

I have a serious concern too that unless he does start on a treatment program that with fluid in the abdomen, it could easily progress to his lungs.
I had that happen and for several years now I have tubes inserted in my chest (3 of them) where I would actually drain the lungs myself. I used to have to do it every three days, but now maybe once a month, if that.

My heart just really goes out to both of you and I can just imagine how worried and exhausted you are. Try some of these ideas and don't ever be hesitant to ask any question or express any concern. Also, you are more then welcome to write me via email also.

My very very best to you both


Re: new here, husband is in the hospital

PostPosted: Tue Nov 29, 2011 8:08 am
by patoco
Hey there

I am so very very sorry to hear this. We will continue to pray for both of you, much more intensely now.

I understand what the doctors are saying, but I do know that they can be very wrong too.

Our love to you both :!:


Re: new here, husband is in the hospital

PostPosted: Wed Nov 30, 2011 1:47 am
by runnermom
I've read your posts and I'm speechless. Sadly, I'm not all that shocked after reading about many other LE-patient hospital experiences. I'll be sharing your anecdote with my med-student friends in hopes of instilling a greater sense of understanding in them as future doctors. In fact, I think these message boards should be required reading for med-students . . .


Re: new here, husband is in the hospital

PostPosted: Wed Nov 30, 2011 8:47 am
by patoco
I too am speechless...although there is a lot of steam coming out of my ears about now.

The way you are your husband are being treated is criminal. I have never been someone to sue, but not only would I go right down the chain of command at that hospital, but I would consult with an atttorney.

There are world recognized physicians that treat lymphedema and those morons at that hospital need to consult with them.

Find out if they might be willing too and let me know.

BTW, I have much respect and admiration for both you and your husband in how you are handling this and keeping it together.


Re: new here, husband is in the hospital

PostPosted: Wed Jan 25, 2012 6:24 am
by patoco
Hey there

The care your husband has received is beyond anything that should be permitted and frankly, I would love to see some medical licenses yanked. :twisted:

Our hearts and prayers continue to be with you both, and though it seems impossible, hang in there. Sometimes, little miracles really do happen. For several years, I have had to drain both my lungs. Every three days I would drain a quart from each of the three tubes in my chest. Then, suddenly, with no explanation, it stopped. I haven't had to drain my lungs in six months. We don't understand why or what happened, but all I know is that out of the blue, the pleural fluid stopped accumulating.

It may take a bit of time, but your husband may well be able to get to that "pre" hospital life. I understand that too. I look back at the last few years and have many many times wished I could go back to the pre 2006 life. I would still have the lymphedema and lymphoma, but even then I could work, get around and take care of myself. It's really devastating to loose your ability to even do small things, we all normally just take for granted.

But, I'll tell you both, quite honestly, the fact that you both have endured so much this far, tells me a lot about your inner strength and courage. Take each day at a time and try (though it seems impossible not too) don't think in terms of years and years ahead.

Much love to you both :!: