I have cardiomyopathy and have a CRT-D and also have CHF, COPD, and lung nodules in both lungs.
about 2 months ago I developed a 3rd beat with a pause, they said it was arrhythema and that the cardiomyopathy is progressing. My blood pressure goes up and down, up and down all the time, it doesnt stay long at the scarey blood pressures, but it does go there, and I feel horrible most all the time. Lately the lowest was 60/40 and the highest was 169/130. I have a horrible time at night. I never get to sleep longer than about 45 minutes at a time. My heart acts up worse at night when I am trying to sleep, and it wakes me up. It also makes me hot as a firecracker and makes my cheeks red, and I get very nausiated and even feel it in my throat. Really weird. I have only had this for 3 years now, and my device has shocked me two different occasions, but 6 times each occasion. 830 volts each shock, so each occasion, I received 5,000 volts electricity to my heart. I have been told my heart is very scarred.
I will be having a new CRT-D put in in the next couple months as this one is almost out of juice.
So.......why are my doctors acting like I am ok ? Is this the normal course for someone with my situation ?
the arrhythema that started 2 months ago can be constant for hours at a time. it is exhausting and nausiating.
What should I do? Is this normal ? really ?
Is your bed at an angle? When you have CHF, blood backs up into your lungs, which makes sleeping hard. You should have your bed angled, so you are not flat. How is your breathing? When heart valves are bad, you will have a hard time breathing as I imagine you probably have already with your COPD which CHF causes. Do you know if you have Left side heart failure or right side or both? Blood pressure very low is dangerous and the high blood pressure is just as dangerous. Low blood pressure can result in liver failure and high blood pressure can result in a stroke. You may have to have your medicines adjusted to regulate your blood pressure better. You do not want to wear out your heart from high blood pressure, along with your lungs and kidneys. On the other hand, the blood pressure needs to be high enough to circulate to your organs so that they will not suffer. Write your symptoms down on a log and take someone with you to your doctor to ask your doctor if any of your medications can be adjusted or changed to help you feel better.
Thank you for your reply to me. I appreciate you taking your time with me.
My bed is not at an angle, I will do that today.
I have left heart failure, and lately I think my right side is starting to fail. You know
so long as I am sedentary my blood pressure stays about 100/70 on average.
But I have those dips and spikes, but they dont stay low or high. It is strange.
I will start feeling weird, hot, nausiated and it will last a few minutes and my face
gets red, then the blood pressure will do something, then go right back to normal.
Sometimes these little spells happen about 10-20 times a day. If I try to take a walk, my bp skyrockets, pulse too. I think what bugs me the most lately are the arrhythemas that started a couple months ago. They say I have a third beat now with a pause. This can go on for hours at a time, and is nausiating and my heart jerks, and I feel this warmth and this weirdness even up in my throat. I know both of my valves are leaky. They used to be moderate to severe, then on the last echo they were only mildly leaking. My EF 3 yrs ago was less than 20 % and they literally sent me home to die. Two doctors came in the room and told me the same story. My last echo it was 70 %.
They used to have me on 3 diuretics a day, Lasix, spironolactone, and metolazone. They stopped working, and I wasnt peeing hardly and kept getting pancreatitis. So, I stopped taking all of them. I didnt get worse, but I havent gotten better either, I just dont have the horrible gut wrenching pain shooting out my back any longer. What is also weird, is I potty every 30 -45 minutes at night, and not much during the day. This is very fatigueing for me. My bun/creatinine is great and so are my liver functions....I dont understand at all what is going on. I also have this pain in my left shoulder that started about 2 months ago.......I am not sure I understand this either. Nothing seems to match up.....My EP doc wanted my regular cardio to do another Echo on me to see if my EP had gotten bad again, and apparently medicare wont cover me to have one right now. Last one I had was last January. I had CT done of my chest and abdomen 2 weeks ago to see if the nodules have grown in my lungs, and to check my organs. No results back yet........I look term with triplets, and I weighted 110 just 3 years ago ! ! I have gained 90 lbs in 3 short years on a diet mostly of Kefir and salad. I dont understand this......I feel like a giant water balloon. The last time they put me in the hospital to diurese me, my blood pressure dropped to 70/50 and stayed there and they put me in ICU for a couple days on dopamine and I thought my heart was gonna beat out of my body. They also gave me 8 bags of water and I left he hospital 9 pounds heavier than when I went in....
What a rude awakening that trip to the hospital was.
I am so confused on all of this. If I take more heart meds, my BP stays tooo low, and if I take less, I stay in tachycardia and have way too many BP spike spells. Even tho they dont last long, they make me feel horrible. I am not sure why all of a sudden I am having this arrhythema or 3rd beat with the pauses, my heart feels really stressed and jerkey during this, these last 2-6 hours at a time. I think yesterday I had only about 2 hours that I wasnt experiencing this.
Is this all just normal for CHF and cardiomyopathy ? ? My CRT-D has 3 wires into my heart. The 2 lower chambers are paced by it, then I also get brady cardia and the pacemaker kicks in when that happens, then when I have events the machine gives me little shocks, then when I go into V-fib or A-fib, it will shock the hoo hoo outta me.
If all is is just normal for a sick heart, I can deal with it. It is all just very confusing for me. Sometimes I wonder if because I am on medicare disability, I dont get lesser care than I would if I had lots of money, or even supplemental insurance. They did tell me that they would not even put me on the heart transplant list 3 years ago, cuz at that time I did not have even the disability, that is why they sent me home to die.......I had no means of paying for the HT, and they said that is what I needed. I went home stripped of hope and will to live. Then I got angry at how inhumane I was treated, and decided I was determined to get well.......
Is this common practice ? ? I am an outdoor person that loves hiking, and being active, and digging in the ruins and rock hunting.....I want that back !
To help you out, you are probably on more than one heart med. You need to take this into consideration. The diuretics are to lower your blood pressure and to help take the swelling off your body. While other medications are to take care of the separate "heart spells" that you experience.
You mention that you feel like a "giant water balloon." This is secondary to your left sided heart failure.
The right side of your heart pumps the blood to your lungs, so it can become oxygenated. The left side of your heart is responsible for pumping oxygenated blood to your body. If left sided heart failure is present, the heart can't pump blood efficiently and the blood gets "backed up". Just like if you were trying to pump fluid through a resistant pipe. Fluid from your blood is being pushed into your cells and extracellular space from this resistance. This is what is causing your swelling and weight gain.
If you smoke or drink at the present time, you should stop. This is by far, hands-down the best way to relieve symptoms.
Back to the point. You are likely on several heart medications. The diuretics for your blood pressure, and more medications for your arrhythmia. Is the medication called Amiodarone? If so, this is for your 3rd sound that you talk about. Anti-arrhythmics like Amiodarone aim to decrease the extra heart sounds, or beats. When you feel like your heart is beating out of control it is likely because you are in Atrial fibrillation, Ventricular fibrillation, or Atrial flutter. It is important that you take the anti-arrhythmic on a daily basis, regardless of what your blood pressure is doing. The diuretics control your blood pressure, the anti-arrhythmics control your heartbeat pattern. If you aren't sure which of your medications is for which condition you have, then you should ask your doctor. He knows what is best and you shouldn't try to "self-dose" based on your symptoms that day. Just take the regimen he prescribes.
I hope this is helpful. If you have any questions, please feel free to ask.
Hi, and thank you for your response.
I do not smoke, nor drink. I eat very healthy, no junk, and dont eat out.
I eat lots of salads, make and drink Kefir, and juice vegetables.
The diuretics shut my kidneys down for some reason, I stopped all 3 they had me on, 2 years ago, I weined off so I could see how it affected my body, 6 weeks for each one. They were causing me to have pancreatitis as well. They had me on lasix, spironolactone, and metolazone.
I recently tried lasix again, and by the 3rd day, my kidneys were shutting down again. The first day was fine, the second day, my peeing slowed down some, and by the 3rd day, almost no urine.
I have a crt-d and my doc said that if I had a problem, it would take care of it....The only meds I am on are lisinopril 5 mg at night for the blood pressure, and toprol 50 mg 2 times a day for the pulse. I am not on an anti-arrhythemic.
My left leg and ankle swells up, and I do have full body edema still, in my tissues, but the left leg and ankle gets bigger than the right. It goes up and down. Almost like lymphedema.
I started myself on high doses of capryllic acid 3600 mg a day, because I have suspected a systemic fungal infection for a couple reasons....old saline implants that may be full of mold, many people with the same lot numbers as mine have had faulty valves in theirs causing bi-directional flow problem and they filled up with bacteria and molds. They need to come out, but the docs want me to have cardiac and pulmonary clearance first......Also, I have had high eos for a couple years now, up to 21, and before my heart went out, I was spending all my time in caves, and digging in old indian ruins, as well as was out amongst the cactus and it all had white fungus stuff growing on it..........so, amazingly enough for the first time in a year and a half, my lungs are not hurting, and the pain in my abdomen that was under my right ribs
that was shooting out my back 24/7 for 3 12 years is gone ! ! I can finally exercise now, and my stomach swelling has gone down by about 6 inches in just 10 days ! and I have only had the arrhythema a few times and I was having it dailey. I have been unable to exercise for this last 3 1/2 years due to the pain I was having..........and it is all gone !
Do you have any clue why my kidneys would shut down due to diuretics ? Would I just be a rare case of side effect of it doing that ? ? ? and the pancreatitis, that is a side effect that is rare with diuretics too from what I have read.......
Any thoughts ? ?
I have congestive heart failure and and ef of 20%. Unlike you I wasn't told I would die from it, but I was given a ICD as they felt with out it I was a walking time bomb. I did have the same problems you were having with the lasix, after a time it just stopped working, was putting to much pressure on my kidneys, if I was in the hospital to get fluid off it wasn't working or would drop my blood pressure to quickly. I was switched to torsemide which has been wonderful. The edema doesn't go away with out a diuretic. I will get swelling in my belly, stomach lining and liver if I don't stay on top of it. Not to mention the fluctuation in heart rhythm from my heart having to work so hard with all the fluid weighing on it. I also was put on coreg cr which has eliminated the dizzy spells I was getting on the other heart meds, so I don't feel so up and down all day. I also am on medicare disability, I think I had to have the doctors write in for them to cover the coreg cr rather than the regular coreg but it wasn't a problem.
Anyways I'd try to change up the diurectic, I simply became resistant to the lasix, but respond very well to a low dose of the torsemide. I do take the spirolactone but it's not a very strong diuretic it's mainly just used to keep you from losing to much potassium. I've had a few misfires on my icd due to my potassium getting to low and causing pvc runs and missed beats. So it's something you need to make sure you keep on top of also.
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