My Last Few Months with Lymphedema

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My Last Few Months with Lymphedema

Postby patoco » Sat Feb 03, 2007 8:51 pm

Hi Everyone :)

Thought maybe it's time for me to share a little bit about what has been going on in the last few months withmy own situation and my personal battle with lymphedema.

Earlier this year, I started gaining fluid in the abdomen, chest and even my arms started ballooning on me.

It got to the point where I was almost incapacitated...very much unable to do even simple things like dress and put on my shoes without a massive and painful effort.

By the time I went to the NLN convention in late October/early November I was able to barely walk with a cane. God bles Joan White and Cheri Hoskins as they got me a wheelchair and wheled me around everywhere so I could get to and participate in the seminars and groups.

Another therapist Carmelita Rifkin was beyond wonderful and would wrap my legs morning and night. I would have never made it for a moment without these three "lymph angels."

The week after the convention was the turning point. It finally got to the point where I could not even breathe without standing up. Sleep was impossible as was just sitting in a chair.

I went to the ER at Gwinnett Medical on November12th, 2006 and was immediately admitted into the hospital. I stay there until December 8th. The hospital crew was great and the doctors were so helpful. It kinda resored a little bit of faith in medical doctors to see these guys try so hard to help.

It was an extreme crises situation. While I was there, they removed some 60 lbs of fluid right off my ab/chest area. From my right lung they drained almost 3 liters of chylous fluid. The procedure is called a Thoracentesis.

I was transported by ambulance yo Healthsouth Rehab hospital where Dr. Paula Stewart maintains her pracice for lymphedema patients. I was there for a couple weeks.

Finally, I returned home on December 22nd...thinking all was going to quiet down.

Not.. :roll: ..on Decembr 27, I experienced a pnueothorax and was readmitted to Gwinnett for another week. That passed and I returned to work. While there they again drained some 2 liters of fluid from my right lung.

The doctors talked about a procedure called a pleurodesis wherein the fluid is removed from the pleural cavity and it is sealed off to prevent further fluid accumlation. In only three weeks another 2 1/2 liters have accumulated in the right lung and we still had 1 1/2liters in the left one.

That meant another week in the hospital. The operation went well and I resumed work the following week.

In the midst of all this, they also found my blood protein level had dropped to a castastrophic level. So I have had to be on this super protein diet.

We have not idea what actually started all this "lymphatic failure" but at least now the fluid is removed and we are doing whatever possible to prevenet it from occuring again.

All in all, I spent about 50 days in the hospital....LOL....but got out for good behavior on Thanksgiving and Christmas.

I am doing much better now...but pacing myself, watching what I do an doing all I can to help the situation.

The very big plus was that I got to conduct little seminar classes for the student nurses on lymhpedema, what it is, how to recognize it and how it is treated. And I got to share an encylopedia of information with the doctors, most of which of course knw nothing about lymphedema. I give them much credit as they all showed a keen interest to learn and to gain as much knowledge as they could.

:mrgreen: Pat O'Connor
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Postby Kim » Sun Feb 04, 2007 12:56 am

Good to see you Pat! :D

Sorry to hear about all you've gone through. You've had quite a time of it, but being Pat, sounds like you made the best of it, kept the positive spin on the situation, and even did some educating in the process. Only you! :lol: Way to go! You're quite an inspiration.

I've enjoyed reading your new posts this evening. Thank you for the continuing wealth of information that you share.

Keep taking good care of yourself; we kinda like having you around!! :wink: :D

Kim :D
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Postby joanne johnson » Sun Feb 04, 2007 7:23 pm

Dear Pat,
Welcome back to the land of the living! You sure had a really tough time of it, but if anyone could survive that experience even with a twinkle in your eye, it is you!

Thanks for all you do for us even when you are under the weather. I hope you are feeling better. Take care and God bless you always!
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Postby gottahavesun » Mon Feb 05, 2007 11:11 am

Thanks for the update Pat, I've been worried about you. I hope you don't see the inside of the hospital anytime in the near future, unless it is to welcome another grandbaby in.

I'm so glad you took your time in the hospital to do some teaching to the staff. Your dedication to educating everyone who will listen on our illness, is amazing.

Please try not to overdue it now that you are sounding better. Your body will still need to recover from the ordeal you just went through.

Hugs to you!!
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Thank you Pat

Postby Cindy » Tue Feb 06, 2007 9:06 pm

Pat I am sorry you are having such a bad time. I am encouraged to hear you are looking up instead of down. You are a reminder to keep my eyes on the lord. I thank you. God Bless. Cindy
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welcome back

Postby suzeeq » Wed Feb 07, 2007 2:09 pm

I too want to welcome you back Pat. I was wondering what had happened since you hadn't been posting for awhile. I'm so sorry for all that you have been through. Glad that you are feeling a liitle better now and hope that the fluid stays out of your lungs. My thoughts and prayers are with you. Keep fighting! You have a wonderful attitude. Loved the post on anger - how true! Susan
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hi pat

Postby carol » Mon May 21, 2007 6:35 pm

I am so sorry to read what you have been through....i cannot are such an inspiration to us all.....god bless and keep you well....hugs Carol from Nova Scotia
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Postby patoco » Tue May 22, 2007 12:11 am

Hi Everyone :)

Thanks for all your notes and well wishes :!: :!:

Things kinda remain touch and go...have regain about a third of the fluid they removed and the lung procedure seems to have been only a very small success.

But...keep lymphing along and doing what I need to.

Special hug to everyone :!: :!:

Pat 8)
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Postby JacquieC » Tue May 22, 2007 6:09 am


God bless you are truly an inspiration to us all. :)

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Postby Nancy Bush » Tue May 22, 2007 7:27 pm

Dear Pat....

Now I know what's behind the statement you made in reply to my post regarding my first hospital visit. You said you had "lots and lots of feelings" about recent events in your life, and hadn't yet resolved them. certainly have been through a lot lately. But from reading your numerous posts, if anyone can handle it, you can.

You have truly been an inspiration to me, and I know to everyone else. Your knowledge of LE is impressive, and we so appreciate the fact that you pass all of that on to us, and those in the medical community.

I'm praying that God give you the strength to get through all this, and hope you are on the road to a speedy recovery.

Much love.......Nancy
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Postby marigold » Fri May 25, 2007 9:48 pm

Hi Pat,
I have not been logging on as much as I should, and just read about your horrid experience last November-December. I would really like it if the reason for that sudden inflation of fluid could be found. There is so much research to be done...on US....isn't there? :roll:
I'm so happy that you had people to help you and medical staff who took an interest. Wishing you much better health,
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