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Thread: Can't breathe lying down, I'm going to lose it

  1. #1
    Join Date
    Jun 2010
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    Florida
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    Default Can't breathe lying down, I'm going to lose it

    I think I'm relapsing back into heart failure, I can't breathe laying down. I'm exhausted and can't wait for my August 11th surgery. Today was really tough, it hard to keep positive when you are over-tired. Sometimes I'm sick of being tough, I'm sick of being strong. It felt good today for me to have a crying spell. Sorry I'm just venting. Today I took extra lasix and limited my sodium and fluids and immbreathing a little better. I'm having slight chest pains too. But there's no point in going to the ER, there's nothing that they can do about it. I'm just sick of this and wish I could have my surgery tomorrow. Thanks for listening. Most people just don't understand how exhausting the waiting, worrying, and the chf symptoms.

  2. #2
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    Jul 2010
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    Michelle,
    I have that same problem with the breathing. I have found that sleeping "propped up" on the sofa works best for me. I have good and bad days with the breathing. My surgery is 2 weeks from today - I guess you are two weeks after me. Noticed you are in Florida - Where are you having your surgery done?

  3. #3
    Join Date
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    I tried putting my pillow on the kitchen table, and slept in a chair at the table. It didn't work very well. You're quite right; the surgery works. May August 11th come quickly for you!
    Jim
    Imlay City, Michigan
    AVR 11-9-01, St. Jude valve
    DOB 5-18-55

  4. #4
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    Default

    I've spent a few nights attempting to sleep in a chair. I can relate.

  5. #5
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    Apr 2005
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    Michelle, would sleeping propped up on 2 or even 3 large pillows help? I still do that years after surgery.

    Sorry you are going through a rough patch. Waiting is hard but do try to think positive thoughts.
    Medtronics Freestyle Aortic Root Heart Valve (Porcine)
    02/16/05 Inova Fairfax, Virginia (Dr. Speir)
    www.steadfastdawgwalker.com (senior fitness blog)

  6. #6
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    You have to call your doctor and get some help with this. You may need more than Lasix to get rid of the fluid. My husband had CHF for years and years. It does come and go and for the most part, if your kidneys cooperate, can be controlled with Lasix and also possibly Zaroxolyn along with the Lasix. It is imperative that you stay very low sodium too. If your CHF becomes too bad, you should go to the ER for IV Lasix, especially if you cannot breathe.

    Your surgery is fast approaching, and help is on the way, but until then, make sure you call your doctor and get the help you need to get through ths period of time.

  7. #7
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    Oh Michelle, I'm so sorry. I remember too well how that feels. I was just like that before my MVR. It's scary, and so much worse at 3 am when you are tired and scared, coughing and crying, and can't breath, and then your throat closes up from crying.

    If you have a recliner, especially a big sturdy one, see if you can sleep in it any better. A big wedge pillow, or one of those dorm room reader pillows may help if you don't have a recliner.

    I'm assuming they can't move your surgery up any???? Do you have any medicine for anxiety? You don't need to be upset and crying. It just makes breathing harder.

    The extra lasix should help some, but it's overall so stinking uncomfortable.

    I'm also scheduled for August 11, for my AVR. PM me if you want to talk.
    Laurie
    MVR & maze & pacemaker-2006
    ICD-2007;
    AVR & tricuspid repair w/ ring 8/11/2010
    home testing since 2006

  8. #8
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    North Alabama
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    MANY people sleep in a Recliner after their surgery. It might help you before yours.

    As others have said, be sure to call your Doctors (both Cardio and Surgeon) about this.
    Hopefully they can help control your issues or maybe the Surgeon might be willing / able to do your surgery sooner.

    Hope all goes well for you.

    'AL Capshaw'

  9. #9
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    Oct 2005
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    Massachusetts
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    So sorry to hear what you are enduring. I agree a call to your doctors is the best course. Hopefully, they can get you some relief.

  10. #10
    Join Date
    May 2010
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    Marietta, OH
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    Michelle

    I am sorry to hear about your breathing problems. I had that about 3 weeks ago. The Digoxin that gave me seems to help and having had my cathwhile I was in the hospital seems to help. Now I know exactly what is and is not wrong. I think we have some nerves thrown in there and that doesn't help. I am waiting with you. Mine is Aug 9. I just keep hoping nothing happens before then. I am trying to keep busy. Everyone keeps telling me - it will be OK. That's because they aren't facing the surgery. We know it will most likely be OK, but there are always thoughts about - what if??? I will keep you in my thoughts and be counting the days and hours with you. Pat

    Pat
    AVR - Minimally Invasive Aortic Valve Replacement with #23 Carpentier-Edwards pericardial Valve.
    Dr. Smedira - Cleveland Clinic Aug. 9, 2010
    Need Hip Resurfacing Info? http://www.surfacehippy.info

  11. #11
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    Michelle,

    I agree about a recliner -- I slept in one for months after surgery. It might well be helpful pre-surgery, too, if you have one or have access to one. (If not, the big pillows are another option.) I found I could take a series of 2 or 3 hour naps in it as needed, and also was good for relaxing -- listening to soothing tapes or watching fun movies.
    Last edited by Superbob; July 16th, 2010 at 10:01 AM.
    Medtronics Freestyle Aortic Root Heart Valve (Porcine)
    02/16/05 Inova Fairfax, Virginia (Dr. Speir)
    www.steadfastdawgwalker.com (senior fitness blog)

  12. #12

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    I definately would put in a call to the surgeons, if they know how bad you are they might try to move your case up.
    Last edited by Lynlw; July 16th, 2010 at 11:28 AM.
    Lyn
    Mom to Justin 25 TGA,VSDs, pulmonary atresia/stenosis ect, post/Rastelli, 5 OHS, pacer in and out ... and surgery w/muscle flap for post op infection (sternal osteomyelitis with mediastinitis) www.caringbridge.org/nj/justinw

  13. #13
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    Default

    Thanks everyone. I am going to the Cleveland clinic in Cleveland. I can't get an earlier date. I don't have a recliner but perhaps a pillow on the kitchen table. I can breathe best leaning forward so I did end up getting some sleep sitting up leaning over five pillows. I started taking more lasix and I'm avoid all sodium today and I've got 16 oz of water measured out for the day. I just took a Valium and will take a nap now, hopefully the Valium isn't stronger than the lasix is you know what I meant. It's hard for me to pm people on here. With my iPhone it's a pain, so my dear August surgery buddies my email is (Email address removed for users safety)I'm exhausted wish me luck in sleeping.

  14. #14
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    Another alternative may be a Wedge Pillow which is should be available at a low cost, perhaps at Walmart, or a Medical Supply outlet (which will be more expensive).

  15. #15

    Default

    Quote Originally Posted by Michelle D View Post
    Thanks everyone. I am going to the Cleveland clinic in Cleveland. I can't get an earlier date. I don't have a recliner but perhaps a pillow on the kitchen table. I can breathe best leaning forward so I did end up getting some sleep sitting up leaning over five pillows. I started taking more lasix and I'm avoid all sodium today and I've got 16 oz of water measured out for the day. I just took a Valium and will take a nap now, hopefully the Valium isn't stronger than the lasix is you know what I meant. It's hard for me to pm people on here. With my iPhone it's a pain, so my dear August surgery buddies my email is mmthompson82@hotmail.com. I'm exhausted wish me luck in sleeping.
    Have you called them? If not I at least would try. Even when the schedual is full for "elective" heart surgeries, they always can fit in Emergency cases. The thing that often plays a part in the recovery is what kind of shape you are going into the surgery, a couple more weeks if you need surgery now, could make it much tougher. I know for Justin when he was 10 and found out during a cath he needed surgery, he wasn't crashing or dieing, but they bumped someone and got him in the next day because they didn't want him to wait a couple weeks.
    Or maybe IF they think you are fine waiting, they can change around the meds you need so you feel better.
    Lyn
    Mom to Justin 25 TGA,VSDs, pulmonary atresia/stenosis ect, post/Rastelli, 5 OHS, pacer in and out ... and surgery w/muscle flap for post op infection (sternal osteomyelitis with mediastinitis) www.caringbridge.org/nj/justinw

  16. #16
    Join Date
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    Hi Michelle,

    I had the exact same situation prior to my second AVR. My CHF made it tough to sleep. I would take a couple of Tynolol PM which would help me sleep and prop myseft up with what I would refer to as "Mount Pillows". But even then it became tough. One thing a consulting nurse suggested that actually worked pretty well was to drink hot tea. That seemed to help quite a bit.

    Agree with those who've suggested not waiting to long for surgery. I waited a bit too long for my second surgery and it made the surgery pretty tough due to the condition of my heart prior to surgery.
    Chris

    1st AVR - March 2002 with Carpentier-Edwards bovine pericardial valve; UW Medical Center; Dr Edward Verrier

    2nd AVR - Nov. 11, 2009 with Carbomedics Top Hat plus ascending aorta replacement plus pacemaker; Dr Craig Miller Stanford Medical Center

  17. #17
    Join Date
    Apr 2009
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    Alamo, CA
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    You've gotten great advice here already. I just want to second that you need to let your cardiologist and surgeon know about your problems. If you get some relief from this by some med and other adjustements, great, but if not, push the system to have them make sure you are OK waiting until the 11th.
    BAV dx'd 10/08
    Ao enlargement dx'd 8/09
    SJM 25mm Master Grafted valve, lower aortic arch replacement 10/21/09 by D. Craig Miller, MD at Stanford University Hospital
    I am a VERY happy man.

  18. #18
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    USA
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    I say let your doctors know. Today. Either you can be helped with some meds, or, you may require emergency surgery, or they may want to move the date closer for you. Let them make the decision. Most valve procedures are elective, and emergencies happen, too. Let your doctors decide if this is the case. There no sense in waiting if where you are right now is doing additional damage to your condition. Call your doctors. Now. Please.

  19. #19
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    May 2010
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    Virginia
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    You need to call your doctor now. Things can worsen fast, and if you are having enough trouble breathing that sleep is difficult waiting a month is probably too long. Once my son started having symptoms it was just 2 weeks from my first concern to surgery. If they aren't aware that it's worsened though they won't know. You want to be in the best shape possible going into surgery so the sooner the better. I'd probably call the cardiologist first, they can likely make more progress with moving the date than you can, and also check on you.

    Becca

  20. #20
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    Jun 2010
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    Florida
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    The lasix and my avoidance of sodium is serving me well. I lost 5 lbs in the last two days and didn't have a problem breathing when I took my nap today. I don't really think it would be best to move my date up when I'm struggling to quit smoking. I started to quit and it's like two days off of them then I freak out and smoke a pack, quit two days etc. Hopefully since my lungs are in really great shape for a smoker I hope that this doesn't cause problems recovering. I'm going to try chantix next week. I know I should have stopped longer ago but anyone who smokes knows it's easier said than done. I'll keep trying no matter how many setbacks. As everyone here probably knows, who has had months to wait for surgery it is difficult to stay strong all the time. It's hard to keep good spirits in times like these. We try, we try to be strong so our families don't worry, we try to be strong so that we don't sink into depression but I've been waiting since February and it's hard to keep this up.

  21. #21
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    North Texas
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    I understand about trying to quit smoking, but hon, I was in your shape before my MVR, and have lots of residual damage from the MVP. That's why I'm having the AVR next month. Call your Doctor about rescheduling. Seriously.

    A month earlier for my MVR surgery could have made a huge difference to where I am now, but my internist didn't think I had a heart problem ("Oh, no, Laurie, you couldn't run agility and have a heart problem, besides you're too young") and sent me to a pulmonologist, instead. HE figured it out.

    I got my surgery 10 days after my first meeting with my cardiologist, and most of that time was taken up with running tests. "Hello, nice to meet you, you need surgery. Let's find out exactly what kind." I was in the hospital all but the immediately prior holiday weekend. My surgeon (who, btw was chief of cardiothoracic surgery and a specialist in heart transplants) moved his schedule for me. He thought I was an emergency, given my condition.

    I'm only waiting a month on my AVR because I AM in good shape, with minimal symptoms, and taking it easy in the meantime while I get some personal stuff done (signed a new Will today, for example, and I'm going to take a long-planned and much desired short vacation in the company of some family which includes a doctor 24/7).
    Laurie
    MVR & maze & pacemaker-2006
    ICD-2007;
    AVR & tricuspid repair w/ ring 8/11/2010
    home testing since 2006

  22. #22
    Join Date
    Dec 2008
    Location
    Atlanta, GA
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    Good luck, MIchelle. My heart only has minor, minor enlargement and I have trouble breathing sometimes when laying down. I can't imagine what you must be feeling. Good luck, do call the docs. .it can't hurt. And do your best on the smoking thing. Every little bit will help your breathing. keep us posted.
    1997: At 33 yo, diagnosed Bicuspid Aortic Valve w/ Severe Aortic Stenosis (1.0cm2)
    2010: BAV w/ SAS (.7 cm2), mean Pressure gradiant: 42mm HG.
    2011: Mechnical valve, On-X, AVR Scheduled Jan 13, w/ Dr. J Alan Wolfe at NorthEast Georgia Medical Center
    http://www.caringbridge.org/visit/tracylynnphillips
    "Breathe in, breathe out, move on." Jimmy Buffett

  23. #23
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    Chantix will really help... really!
    Cris

    I believe in small miracles.
    St. Jude Mitral Valve 5/16/05

  24. #24
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    Jun 2010
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    Brooklyn,New York
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    Quiting is one of the hardest things to do but you need to just do it. I too smoked quit when I started having problems 8 years ago and then started again 4 years ago with one here and one there and the next thing back to a half a pack a day.
    It's been 10 weeks since my last one , I had gotten myself down to 3-4 cigs a day before the surgery and stopped cold turkey now. It's tough but you really really need to stop and call the Doctor. No reason to suffer as you are .
    Wish you lots of luck and hang in there.
    Kathi
    Aortic Valve Replacement & Cabg 1X 5/7/2010
    Dr David H Adams Mount Sinai

  25. #25

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    I know you want to wait until the 11th, but I'm not sure at this point, if that amount of cigarettes between now and the 11th will make as much difference as being in bad CHF for a month going into surgery. I hope I said that right, it would be best if you weren't smoking, but even if you didn't have 1 more cigarette until the surgery, I don't think that would make as much difference as avoiding any more damage to your heart and other organs from the CHF. This would be a good question to ask your doctors and let them decide.
    Lyn
    Mom to Justin 25 TGA,VSDs, pulmonary atresia/stenosis ect, post/Rastelli, 5 OHS, pacer in and out ... and surgery w/muscle flap for post op infection (sternal osteomyelitis with mediastinitis) www.caringbridge.org/nj/justinw

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