Fluid Retention/SOB

Hello, I hope this post finds everyone doing well. I have experienced a small setback. After a heart cath last June in which I was diagnosed with Pulmonary Hypertension, my medications were changed to include more diuretics - I now take Spironolactone twice daily, Zaroxolyn, and Bumex once/day. Since that time my fluid has been quite well controlled for the most part....until last Saturday.

I may have contributed to my own detriment because 4 days prior to that I ate some Hot & Sour soup (which I love, love, love, but know is VERY bad for me due to the salt content (like 1500 mg/serving)

So, Saturday night I started with the SOB. Easter sunday I avoided the ham but gained 9 pounds by Monday with pitting edema in my legs nearly to my knees and the SOB was getting worse. I called the cardiologist Monday morning and reported it. They said they would call me back after the doctor reviewed my message.

Tuesday I had an appointment with my primary doctor just as a blood pressure check etc.....I told him what was happening and that the fluid weight was starting to come off but the SOB was lingering. He had me go to the lab to check my Potassium and Magnesium levels which drop low often. He said he would call me later that same day with the results. I have had critically low Potassium several times for which I was hospitalized.

Wednesday I went to cardiac rehab but told them what was happening and that I was not sure how well I would do working out that day......my blood pressure was up (144/100) and the nurse said she was "disturbed" that my cardiologist had not called me back yet.

Now here it is Thursday night and I have not heard back from either doctor yet. I have lost 7 of the 9 pounds of fluid, so that seems to be resolving itself but the SOB is still not my "normal".

I am asking your valued opinion here ladies.....am I expecting too much or do you think I may be justified in feeling slightly neglected/ignored? Would you expect a response by now?

Best Wishes,

Jeanne

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No, I don't think this is acceptable. Have you called them back? I'm glad you are feeling better. I know it sucks to go to the hospital, but sometimes you just get better results in situations that need fast action by going to the ER. Hopefully you are past that at this point.

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Jeanne
Uhmmm definitely you should have already heard back from both of your drs. by now!!!! I expect same day responses most the time,but sometimes the next day response will do! I have high standards for my drs. and you should too! Do you feel the SOB is getting worse or is it staying the same or lessening??? If it isn't getting better or getting worse maybe you should go get it checked out by the ER. I don't think with you anything is ever a unneccessary trip to the ER!!!

Praying you feel better soon,

Cindy

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yarnkitty,

Thanks for the response. I called my primary doctor's office and asked for the results of the blood test today but they said the doctor hadn't reviewed them yet so they wouldn't share the info with me. I won't take no for an answer tomorrow because I refuse to go all weekend wondering about that darn Potassium.

I think the cardiac rehab nurse called my cardiologist office because when I got home from rehab there was a mesage from their office telling me the doctor had my message in her inbox and would get to it Thursday, then they would call me back. Too bad they didn't.

The SOB is better than it was on Monday but still noticeably worse than usual. Oddly enough sometimes it gets worse during some times during the day and better oher times........and some of the really bad times have been while I was resting - just sitting on the couch or in a chair on the computer - strange.

I knew in the back of my mind this wasn't right, but sometimes I still worry about being a "pest" to healthcare professionals (which I know is stupid) or over-reacting seeing as I have been called a hypochondriac more times than I can count in my life. I was, of course, vindicated on that when it was verified I was as sick as I felt LOL

Best Wishes,

Jeanne

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Cindy,

Thanks for answering this post. I think I already knew in my head that this was unacceptable, but needed reassurance. I still sometimes catch myself worrying about over-reacting because I have been called a hypochondriac so many times in my life - that was BEFORE it was proven I was as sick as I felt LOL

I hear you on the ER.......I absolutely despise going there - but reluctantly do it when I feel necessary. I have been there 15 times now since my surgery Fall of 09 and it is a wee bit embarrassing when the ER doctors recognize me. But, I guess we do what we have to do, eh?

The SOB is better than it was Monday when I called the cardio but still not usual for me. I got completely winded tonight watering my plants (I do have 23 of them, but sheesh) I have noticed it gets better and worse throughout the day with some of the worst times being when I have been resting, so thats a bit strange to me.

Thanks for the well wishes,

Jeanne

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TyTy,

Thanks for the response. Sorry to hear you have trouble with that electrolyte balancing act too........no fun at all to deal with. I am currently taking 120 mEq/day of Potassium supplements and 500 mg of Magnesium which brought my Potassium level to normal (exactly 3.6) for the first time in 6 months. But, that is 8 horse pills a day which has also caused me alot of nausea and vomiting. That had them give me yet another pill - Zofran so I am taking 27 -30 pills/day. Thats crazy!

How long does the electrolyte imbalance keep you more SOB? I have never had that with my low Potassium before. Felt pretty crummy, once or twice even felt like I might die, but didn't notice worse SOB. How did you resolve it when it happened to you?

Best Wishes,

Jeanne

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Usually just a big glass/bottle of Gatorade and then a half glass every few hours. I would say it lasts for about 3 days. I've also recently become anemic and that causes shortness of breath as well. I recently went out of town and didnt take the iron for about a week and noticed a big difference. I'm not sure if the diuretics deplete iron too.

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TyTy, diuretics do not deplete iron. Chronic illness is sometimes enough to cause anemia (they call it anemia of chronic disease).

Jeanne, with the severity of your CHF you can become dangerously decompensated in hours. Your doctors should be treating you that way. You are not a pest, you are a seriously ill patient who needs to be taken seriously.

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Jeanne, I hope you will hear from the doctor! what I do is get a copy of my lab tests the next day from the lab or from the hospital records department. when I go out of town to the cardiologist and for blood tests I can get the lab copy here in town as it's the same lab and is online for the local office to get. my husband goes to get it about 8 a.m. and it will be 5 p.m. before the nurse calls from the doctor's office.

I am taking lasix and spironolactone for fluid due to shortness of breath after a heart attack and quad bypass. the doctor said I don't need potassium since the spironolactone is to keep lasix from taking it out. but he agreed I can take one klox-con potassium at night with my calcium/magnesium/zinc tablet for my legs.

it's good that you learned what food cause you trouble so you can avoid those!

Donna

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I had aortic valve replacement in May 2010. They also found 2 coronaries blocked 50-70% and a hole in my heart. Recovered surprisingly well, had just aching, pain control was excellent. Then I went to rehab. The bikes caused the sciatica from hell and I got dizzy and fell on the knee on the other side. No more rehab. Going back after I was well was not an option due to the cost (insurance won't pay after a certain time). The following year I passed out at work (in a hospital, lucky me) and I had to get a pacemaker as my heart rate was 29 (they tell me this is one of the complications of open heart surgery). So now I am having shortness of breath when I walk into hospital to work(only 2-3 more stress filled years till retirement). I have asthma due to nasty sinuses, but my peak flows have been in the 450 range (was 600 when I went for my surgery and had to be re-intubated due to my asthma) The sinuses have not been well and I have been wheezing and since I sit at work all day my legs swell. I just had gallbladder surgery last month also. I have been thinking of just popping another diuretic and seriously watching my sodium intake. What does everyone think. I am wondering also if the stress at work, stressing over having no long term sick time to take, asthma in combination is causing generalized anxiety. I don't seem to have a problem walking around my apartment. (by stress at work I mean I told my supervisor I would rather slit my wrist then come to work!) Now that felt good. When I walk longer distances I feel as if I have done 100 pushups and situps. I also do have a disc out. Sorry for the rambling, but had to get it out. Do hae an appointment in a couple of weeks with my cardiologist.



Right now I am freaking out at the thought of another surgery, but when I think about it all I think about is the fact that I have 7 lousy hours left of my long term sick and financial problems would be more than I can take,

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Donna,

I get copies of all my records as well.......a very wise person here told me to do that when I first found this site. I have found doctors tend to give out LITTLE information regarding tests etc.......some of the records have been eye - opening. I feel better informed. My doctor's office as well as the cardio will jot release records till after the doctor reviews them though. That isn't real helpful, eh?

Despite taking Spironolactone twice daily, I still run low on Potassium. I have been in the normal range two times in a row now - yeah! I was really thinking there was no way I can gut down more that 8 of those Potassium horse pills.

I can pretty mych reassure people I will NOT be having any Hot & Sour soup in the future. :)

Best Wishes,

Jeanne

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closetbird,

Sorry to hear of your asthma issues.......I was diagnosed with COPD in Feb 2010 (despite never having smoked) and wound up with a pacemaker as well 9 days after my valve replacement surgery. I was very upset when I was told I needed it (intermittent complete heart block) but now am grateful for the peace of mind that comes from having it. Oddly enough I also had my gallbladder removed in Sep 2010. We followed similar recovery paths, eh?

I can't imagine you working full time, at a stressful job at that, with the conditions you have......I feel for you. Please keep us informed on how you are doing. Hang in there.

Best Wishes,

Jeanne

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