miocean

Fluid Around My Heart

18 posts in this topic

My Echo yesterday showed fluid around my heart. Although I am not happy to hear this I am happy to possibly get an answer as to why I might be so short of breath lately. Although other tests had remained stable up until now my pulmonary function has declined (DCLO is down to 17%). My previous Echo in July did not show this fluid. I was taken off a diuretic in May due to the dehydration from diarrhea and need to go back on it. I also have to repeat the Echo in 2 weeks. 

 

I saw a new rheumatologist yesterday at Columbia Medical Center and like her but will continue seeing the one I have used for the past 11 years as well. I am working on getting a team of doctors at Columbia. Tomorrow I am supposed to repeat the 6 minute walk test and see a gastroenterologist. 

 

It's always something with this disease...

 

miocean

 

 


ISN Artist

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Hi Miocean,

 

Sorry to hear that there's yet another complication for you, but I can see that it's almost a relief to have an answer to your breathlessness.

 

I hope that the diuretic will help with the fluid retention around your heart and that your ECHO will be improved on the next test.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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I am sorry to hear about your heart although it sounds as if your doctors have it under control I will send you my blessing  :flowers:  :balloons:

I am also sending you a soft kitty with some great flowers and balloons to pop just for the fun of it.   Good luck, bless you.

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The lung disease specialist just called to tell me she has concerns about me flying on vacation next month due to the fluid around my heart, my lung function, and the length of the flight. She didn't come right out and say I couldn't go but did say if my upcoming echo shows no improvement I should consider not flying. So cross your fingers, toes and eyes and send out positive vibes that I get better.

 

miocean


ISN Artist

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Hi Miocean,

 

Oh, I do hope that your upcoming ECHO will show enough improvement to enable you to fly and go on your holiday.

 

My wrist is functioning again, so there's no problem crossing all my fingers for you for a successful outcome! :wink:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

Oh my goodness. I hope you are able to fly on vacation. But if it is not cleared up in time, it is better to recover at home than to be in dire straits in the air or in another country. Perhaps you could develop a Plan B for vacationing at or near home, one that you could always revert to, if needed.

 

I try to always think in terms of alternate plans and keep on adjusting them until they fit my capabilities that day. I know you are great at that, too!  What could you do at home that could be really fun and manageable for both of you?  Game nights together or with friends, a painting spree, museum visits, plays, local sightseeing, or even just a great vacation book? 

 

I'm sending lots of good wishes your way in hopes that you mend enough in order to be able to safely travel. 

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Miocean,

 

Oh, I do hope you can go on vacation.  If you're like Gareth and I, you so look forward to that down time, relaxing with no medical issues/appointments.  I will keep you in my thoughts that the diuretics kick in and work properly.

 

Take care, Everyone.

Margaret

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I have been in my local hospital the past week. I came to the ER late last Tuesday night. I went through tests on Wednesday that showed quite a bit of pericardial effusion. Thursday I had a procedure to drain my pericardium. A "window" was created in my pericardial sac and during the surgery they drained 1/2 a liter of fluid off. The drain stayed in for 24 hours took another 1/2 liter off. The window is permanent so any future buildup will drain directly my abdomen. I was hoping to go home on Monday but then my kidney levels went all off. I have been put on fluid restriction, a renal diet and was given a special medicine to pull the potassium out of my body. I practically slept on the commode last night. Fortunately, I am improving and my levels are going back to where they should be for me.

 

It has been a nightmare of a hospital stay with dealing with being really sick, crazy roommates, room changes, and being stuck for IV's and lab draws so many times I've lost count. It was so bad I had to ask for the patient advocate. I am tethered to the bed with IV's and oxygen. On top of that I may not be home for the holiday. It looks like my vacation will not be happening. 

 

miocean

 

 


ISN Artist

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Hi Miocean,

 

Wow, I was not expecting an update like that. I'm sorry all this has happened to you, and right when you wanted to be going on vacation. And now you might be stranded in the hospital for the holiday, too?

 

Well, I am thinking of you and sending lots of good thoughts your way. I don't want to even imagine your holiday dinner. Like, yuck!

 

Are you at least rid of the crazy roommate?

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Miocean,

 

Goodness me, I am sorry to hear that you're having such a rough time at the moment.

 

It's bad enough having to go into hospital at the best of times, but to have to cope with all the procedures you're experiencing and have the added complication of the close company of the local headcase on top of everything else! The whole thing sounds like a complete nightmare. :sad:

 

I'm so sorry that your holiday will have to be postponed and I do hope that you will improve very soon and at least be home and out of what sounds like an absolute madhouse.

 

I'm thinking of you and sending good and healing wishes your way.

 

:hug-group:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I am happy to tell you I am home and was able to spend the holiday with my family. I will work hard to recover from this. This week I should be getting set up with at home services. 

 

As difficult as this hospital stay was for me it opened my eyes to a lot of the problems with our medical system. Facilities are outdated, overcrowded, and the staff is overworked. I know everyone was trying their best and am very grateful for that.

 

miocean


ISN Artist

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Hi Miocean,

 

I'm really pleased to hear that you're back home again and that you didn't have to spend the holiday time in the hospital.

 

Hopefully, the home services will kick in and you'll feel better very soon.

 

I do hope the New Year will bring a lot of improvement for you.

 

:hug-group:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

I'm thrilled that you are finally home!  I've found there is a vast difference between hospitals, even ones in the same neighborhood. You may not notice it quite so much if you're in an area of outstanding facilities, or if you go to the really major centers. In the poorly equipped and staffed centers, sometimes the caring of a few staff members really shines brightly, as we are so aware of the exceptional effort they are taking under adverse circumstances. 

 

I hope that you settle in okay at home now, and that your home services are helpful, too.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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It's back. Even with the pericardial window I have fluid on my heart again based on the most recent echo. Since this isn't suppposed to happen I have a bunch of doctors trying to figure out why. And,of course, it's the weekend.

 

I'm getting tired of all this.

 

miocean


ISN Artist

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