Long-term Edema

[Christy]

I had double valve replacement surgery (mitral and aortic, mechanical) just over a year ago and much to the doctors' dismay have had real problems with edema ever since. Diuretics help for a while then the weight comes back. Of course I'm doing the low sodium, compression stockings trip but not much seems to help. It goes all the way from my tippy toes to my rib cage and even into my pulmonary cavity when it's really bad. So far my doctors have called this "a mystery" and "an enigma" and one just simply looked at my history and said "Oy, veh!" So although the heart surgery was successful in terms of valve functioning I feel worse since surgery and have even had to take an early retirement. Any tips? Ideas? Suggestions?

My 2 cardiologists strongly suspect that the valve scarring was due at least in part to radiation/chemotherapy for Hodgkin Disease in the mid-70s and my PCP, whom I love and trust, thinks that treatment might have something to do with this persnickety edema as well. Most days I'm doing fine, enjoying life, gardening, playing with my dogs, even doing a little volunteer work, but it is FRUSTRATING TO THE MAX to be so limited!

By the way, thanks so much, all, in prepping me for surgery, advice re valves, recovery, the joys of coumadin, etc. This site is the BEST!!!

Christy

 

[Curtsmum]

Hi Christy, i can honestly say i dont even know what edema is but dosn't sound very nice. Wishing you the best of luck with everything hope things get better for you soon, hang in there, you have found the best place to be, take care.

 

[PairoDocs]

Re: Edema

Re: Edema

I have been reading somewhere that it is thought that the edema could be part of an exuberant immune reaction, especially in a younger person. Same with pericardial effusions, etc. Many times the edema resolves on its own with no treatment, but it could take a few months or years. So don't give up the ship!

Sunny in Idaho,
-Laura

 

[citrustaco]

I want to wish you best of luck

I want to wish you best of luck

I don't know anything about edema. But I just wanted to let you know that I am thinking of you and wish you the best.

 

[Nancy]

Have any of your doctors done a BNP test to check for Congestive Heart Failure. I would think that would be the first thing they would do.

If it turns out not to be congestive heart failure, maybe it is something like lymphedema which can happen when the lymph system gets injured or interrupted by something like surgery.

It seems to me that rather than saying, "Oy Vey!" your doctor should have said he would do more testing to get to the EXACT cause of this terrible problem.

If it is congestive heart failure, and it is this bad, you need to seek out the best cardiologist you can find, and get rid of whomever didn't help you.

If it is not CHF, then don't let up on your doctors until they do right by you.

"Oy vey!" is not a diagnosis!!!

 

[designlady]

I also had Hodgkins Christy...

I also had Hodgkins Christy...

Hey Christy!

I also had Hodgkins with radiation and chemo in the mid 70's. At that time they also removed my spleen. I had OHS (arotic valve) January 23, 2008. I too am suffering from long term edema. My doctors have me on a maximum dose of Bumetanide plus having to take potassium with that. I totally understand what you mean about being flustered. The diuretics make me feel terrible. The doctors have me monitor my fluid intake. When they think that the situation is resolving and lower my Bumet then in a couple of days I'm back to square one. Ayeeeeeeeeeeeeee! I go back to my cardiologist the 26 of this month. I'm really going to push the issue. If I find out anything I'll let you know. I've had fluid removed from around my lungs several times since surgery...I can never tell what size clothes I'm going to have to wear...I have shortness of breath when the fluid retention is really bad...I constantly have to make sure there is a restroom around. I FEEL YOUR PAIN! Well better run...gotta go and go and go!
Jane

 

[njean]

I had double valve replacement surgery (mitral and aortic, mechanical) just over a year ago and much to the doctors' dismay have had real problems with edema ever since. Diuretics help for a while then the weight comes back. Of course I'm doing the low sodium, compression stockings trip but not much seems to help. It goes all the way from my tippy toes to my rib cage and even into my pulmonary cavity when it's really bad. So far my doctors have called this "a mystery" and "an enigma" and one just simply looked at my history and said "Oy, veh!" So although the heart surgery was successful in terms of valve functioning I feel worse since surgery and have even had to take an early retirement. Any tips? Ideas? Suggestions?

My 2 cardiologists strongly suspect that the valve scarring was due at least in part to radiation/chemotherapy for Hodgkin Disease in the mid-70s and my PCP, whom I love and trust, thinks that treatment might have something to do with this persnickety edema as well. Most days I'm doing fine, enjoying life, gardening, playing with my dogs, even doing a little volunteer work, but it is FRUSTRATING TO THE MAX to be so limited!

By the way, thanks so much, all, in prepping me for surgery, advice re valves, recovery, the joys of coumadin, etc. This site is the BEST!!!

Christy

Dear Christy,

I had to do a double take when I read your post because it sounds so similar to mine!

I too am a double-valver (Aortic & Mitral); my first 2 surgeries were in 1975. Had a great, active life for 31 years; no limitations or maybe I just didn't give in to anything. Then in 2006, I had to go in for a 3rd OHS to have the old Aortic valve swapped out with a new St. Jude valve. The old mitral was left in it's place because to the surgeon it appeared to be working okay so he opted not to change it out. Well, lo & behold, a year later it starts malfunctioning & I looking at a possible 4th OHS to change it out but I have been told that it's extremely risky & I am very nervous & have so many reservations about having & surviving another OHS!

And, since the surgery in 2006, I have never felt completely well probably because of the faulty mitral but I also constantly fight adema in my legs, ankles & mid-section. I went from 40 mg of Lasix a day to 160 mg & a very low sodium diet to try to keep it in control. But like you, it's a constant battle & when I put on the lbs., I feel miserable & have to take extra Lasix to get it off. In fact, & please excuse me for being so revealing, but I have always been a small-breasted woman; after my OHS in 2006, I grew boobs! "But at my age, I told my husband, who needs them!"

My activity too is minimal & I also had to quit work last year in May & take an early medical retirement from my employer of 20 years! Like you, I get so frustrated at times because I can't do some of the things I loved to do & have to pay to get done.

But, I have to Thank God for still being here & after I read other people's posts who seem to be in worst shape than me, I feel ashamed for feeling the way I do. So in the meantime, I just take it one day at a time.

I will keep you in my prayers & hope that you will get to feeling better soon & that your doctors find a solution for your troubles. Take care!

 

[Christy]

Many thanks, all of you! It's so nice to know I'm not alone! I'll ask my doctor when I see her on the 18th about the possibility of subacute thyroiditis, and I have been diagnosed with CHF but since the treatment is to reduce water retention and that's not working it's all part of the same big tangled mess. It makes me soooo grateful for good days and soooo grumpy about bad ones. I keep trying to remember radiation/chemo for Hodgkins is sure better than the 6-month prognosis I got in '74, but back then nobody knew what to look for in the line of complications.

Again, any tips are much appreciated. And I've found that sometimes anger is my best friend ... gives me the oomph to keep on pushing and asking questions!

Big thanks to Design Lady Jane and to Norma!

And to you all.

Christy

 

[Dina]

Hi Christy, I am 9 weeks post op tricuspid valve replacement(bovine) and
am still having significant edema(had it preop too)I also have a low thyroid
and take synthroid but it doesnt seem to help. I had hoped to be working by
now ,but with swollen calves , ankles ,and toes that look like Vienna sausages
.....I can barely put on shoes.
The only things that help are elevating my legs ,CV stockings, no salt,Lasix ,
exercise and a long night of sleep. If the damage to my rt ventricle improves,
the edema may also. And there is always hope.
Sharing the trials,Dina
(* Also some meds can cause fluid retention or edema*)
( the correct #s for thyroid-TSH is 1-4, <1 is hyperthyroid ,
>4 is hypothyroid which is the one that can cause edema ,etc,etc....)