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Sob

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Sob

    Well now i have a call into doctor gilligan to talk about this SOB i'm having and i told theresa his nurse to tell him no more fluid pills i'm taking enough, 160mg a day is enough and i'm still having alot of SOB i was talking to my brother on the phone andi had to walk to the front door and i was out of breath and had to sit down iam over this maybe if he turned my pacer back on it would help but i'm going to push to see a specialist in cleveland a surgeon to see if everything that they did in surgery is ok and see if there is something that is causing this SOB and i also get dizzy just sitting here typing not bad but i still get dizzy, the only thing i see this surgery did was stop my feet from being ice cold, i can't go outside or i swell like a balloon and then the SOB is worse, i thought after 3 months i would feel better, if i don't get some answers well i'm not ready to call it quits but mighty close to it, i can't seem to get any where at all, all that is being done is they are throwing fluid pills at me well yesterday my blood pressure went down diastolic was 56 so i started drinking water and i was also a little nauseated but after i drank a little water my diastolic went up a little so i believe i was dehydrated i don't care if they put me back in the hospital just find out what is going on and treat it iwant the guessing stopped. Thank you for letting me bend your ear

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

  • #2
    Re: Sob

    Shirley,

    I am so sorry you are still having so much difficulty. I think you are wise to try to see someone at Cleveland C. It seems that this is just not working for you.

    I'll be praying that you get feeling much better very soon.

    Rhoda

    Comment


    • #3
      Re: Sob

      Thank You Rhoda

      I still haven't gotten a call, i guess i'm just being impateint i'm wanting to go to the beach with my brother next week he is coming here to Virginia from Oklahoma for a visit, and i'm kinda scared to go out there with all the SOB i'm having, you know everyone that comes here has to go to the famous Virginia Beach and i want to see my sister in laws face she has never seen the ocean before, i am taking portable oxygen with me just in case i need it, i just hate having this problem i'm a very active person, and i quit smoking so i could breath better and my breathing is worse, i guess i should have went to a doctor in ohio like i wanted to in the first place, but my insurance company said no as long as there was a doctor here that could do it, so i felt stuck, darn if you do and darn if you don't times, thank you

      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment


      • #4
        Re: Sob

        Shirley,
        My friend, you can bend my ear from now to doomsday if it gives you any relief to talk about it. I’ve been concerned about you for quite a piece now and want to hear from you, but hate to hear you’re not doing better.

        I am very familiar with SOB and rubbery legs. If I bend over to tie my shoes – whammo. Sometimes I get SOB just standing up – especially after meals. My doctor only mentioned ablation once so far – in passing – and I know it helps a lot of people, but I hate half measures – I’m sure you know what I mean.

        Take care, get good help, and please keep us posted.
        Burt

        Comment


        • #5
          Re: Sob

          Shirley, I am sorry things are not going that well for you in the SOB and fluid department. I have been wondering if it is taking you along time to feel better and have restrained from commenting so as not to discourage you more. You have seemed to need input on this so if I may jump in. I have been watching and reading on others' progress as well. It does seem discouraging that some seem to reap great returns and others do not. It is very difficult when you are on the side of the slower progress, I will share that it has been 7 months and there are improvements but I am a bit jealous of those who seem to be doing very well. I have hesitated to comment as I did not want for someone to interpret it that I was a moaner groaner or a whiner. I'm not, but sometimes I think it can sound that way. If I recall correctly you are older like me. My feeling from reading is that some of us with degrees of CHF; some of that CHF being more like the traditional type of CHF vs those with CHF strictly related to obstruction may not fair as well or perhaps we will take much longer to feel better. I prefer to believe it is the latter and remain ever hopefull. My family trys to get me to call the doctor when and every time things start to swing down and I just avoid it feeling there will be yet another drug involved and I am sick of it. What I have tried to do to make it less traumatic to me is to think real hard and try to remember what degree of pain and SOB and all the other symptoms of a very large gradient that I had last summer. When I do this I can realize that there are still some very big improvements since then. What is harder is to realize that this may very well be all there is . That is why I force myself to think and remember. It is like when we have our babies ; through history it has been felt that if we remembered the pain well then population would probably not go up. Does this make sense? It is very, very hard to not be on the same funtioning level as those who are our age,our peers or even those who have HCM. This disease has many sides. Yes even after myectomy there are still some very troubling complications. I think that those who seem to be out and about a lot are paying the price on their bad days but they don't talk about it much. So we don't here it. I do believe youth is on some peoples side as we know that normally we all differ in ability according to age ,Right? I find myself saying, isn't there one day or one thing I will do that will not remind me that I have HCM? I quess not ! I just don't want you to be too discouraged and I want you to feel like you can always talk to all of us about it. I'm glad you brought this up , I had been thinking of PM'ing you. Shirley, finally is there a component of your insurance that could get you on board with the CHF nurses who call. I know it is well utilized in these parts and was a wealth of teaching monitoring and big support for me . Just a phone call away. BC&BS have it , they send the equipment and contract with VNA's to set up the phone hub and show you how to use it.They help when we get disgusted and feel like giving up or chucking it all. I hope I have not innundated you too much , I think about how you are a lot and relate to you. Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Re: Sob

            Pam

            I have nurses on call through my insurance company for my CHF in fact they just called monday to check on the meds i was taking for fluid she had seen i was on 2 loop diuretics everyday and she wanted my permission to call my doctor on it, i just wish that the surgeon would have told me if i were thick all the way down the apex he wouldn't take it , he said he didn't feel comfortable to go down that far, he said he went down about 2 inches and stopped, he said my heart was still stiff, and i just wanted a doctor who has done these surgeries alot to look at my heart and see if there is something going on in there and if there isn't then i guess i learn to live with it. i have always been afraid of saying too much here also and then i got to thinking not everyone has a positive experience with this surgery and maybe i'm not alone here well i need to go cook dinner

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

            Comment


            • #7
              Re: Sob

              Pam,
              I love you, but you should know that sometimes catharsis is of great benefit to all. Especially on this board where you’re sure to find sympathetic ears. That’s one of the things I love most about it. That and the info, guidance and help it provides.

              If something is bugging you, talk it out. It doesn’t discourage others – it shows them that they are not suffering alone, and it often clears the mist when you’re trying to figure out what to do next.
              Burt

              Comment


              • #8
                Re: Sob

                Shirley , Anything good for supper? I am glad you have the Chf nurses. Sometimes I thought they were a pain and I'd avoid their call but then that was when I was trying to pretend that I did not have a problem, oh DENIAL! I did not realize that they could go very far down the septum due to the wiring of the heart . As it was explained to me , they took a big chunk like a wedge the size of the tip of the thumb. I like you have a very stiff left ventricle. This is the main reason the other facility doc says he would not have done my surgery or I was not a candidate. He feels the stiffness of the left ventricle is my biggest incapacitator. I am still better and you probably look back too and realize you could not have gone on the way you were. Right? He still tells my brother and my mom who still see him that he doesn't believe that a myectomy will improve my quality of living . Of course he angers me and I tell my mom if she must comment ,just to say to him ,"She's much better!, Thankyou for asking!"
                Burt, I love you too. Thanks . Sometimes we all need to get a kick and remember it is after all a support board as well and we need to say it as it is for ourselves included Pam. Talk to you later , supper is blowing up in the pressure cooker!
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Re: Sob

                  Oh Shirley, My Heart goes out to you (Believe me, my heart is no bargain) I don';t think anyone on this board is a "Moaner", we seem to indure a lot & sometimes you just goota talk a little.
                  I know exactly how frustrated you feel! I thought haveing the Myectomy last Summer (Mayo) was going to be the answer to all my Prayers & I'd be returning to an Active Life. Not So! I also read all the success stories, last Fall & Winter & wonder "what my problem was" We, it turned out I had a blocked Coronary artery (the artery was injured during the Myectomy & scar tissue grew till I was 99% blocked) I sufferred since last Nov. with pain (using 2 kinds of Nitro), the pain would come 25-30 times a day-it was so bad I would throw up! The Point to the story is PUSH THOSE DOCTORS- find out what's wrong. I did go back to Mayo & they fluffed me off. My local cardio, found & fixed my problem. So don't let them just tell you it's nothing. You are SOB - it's something! If you don't feel you're carrying around much xtra fluid-tell them no more diuretics. The downside of my story is-I'm 6 weeks out from my Bypass-9 Months from Myectomy & I still have a lot more Pain, than I think I should! I had a (very easy) Cardiolite stress last week & I see my Cardio tomorrow-so hopefully I will have answers.
                  Don't ever hesitate to talk about how you are feeling-it does help to know you are not alone. We will all get thru this
                  Be Well
                  RONNIE

                  Comment


                  • #10
                    Re: Sob

                    Pam

                    I had a chef salad for dinner, it is too hot to cook and i now have a headache, my daughter came over and ordered a pizza from pizza hut for everyone else, but the doctors office called and he wants to wait until i go to the pulminary doctor just to make sure it's not my lungs that is bothering me and then he would give me a refferal to cleveland heart clinic to see a surgeon

                    And Ronnie

                    Thank you for the response, i was beginning to think i was the only one that was having problems after a myectomy i had a lot of problems even in the hospital with SOB but they thought it was fluid and some of it was because of fluid but not now, but because of you and Pam i know i'm not alone don't get me wrong i don't wish this on anybody

                    Take Care

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #11
                      Re: Sob

                      Shirley and all you wonderful people that share their good and bad experiences
                      As you all know, I am a newbie here. When I read some of your posts I feel so guilty. What am I doing here? I do get palpitations, heart failure (sometimes I can't make it one block without stopping to get my breath)my heart races at times, I have gone straight lined 5 times, BUT..you guys seem to have new medical problems or serious medical problems that, in my mind, keep you going to the hospital or calling a doctor. I sincerely pray that each and every one of you get relief and answers. Maybe my time will come that I will be sharing problems with you, but please don't EVER think that posting anything when you are down will make us think of you as a winer. Everyone needs to vent and what a better place to do it than here...where we all care and feel your pain and frustration
                      May God Bless
                      Esther
                      Esther

                      Comment


                      • #12
                        Re: Sob

                        Hello everyone - i am a newbie here but i have gained a lot of knowledge from reading the board - i am usually here three or four times a day because i have found it to be very interesting and informative - i too suffer from SOB and swelling - my cardiologist do not like to give me Lasix but my Medical doctor would prescribe it for me - 40mg for at least a week - not on a regular basis but it helps it lot. At present i sleep on three pillows. I am still employed as a Secretary and fortunately for me i have not been admitted to the hospital for the past year but i have been to the ER once last year where i was put on drips as my heart rate was very low - i am taking beta blockers along with calcium which contributes to that - that is what my cardiologist told me. I am now trying to get an appointment to go to Cleveland for a second opinon - my Cardiologist and my Medical doctor has produced medical reports to my insurance to start the ball rolling. I do read all messages here because you have taught me things that my doctors have never explained to me also what i should look forward to although everyone does not have the same complaints but i am now aware of what could happen and what you should do when it does - so please - everyone do not stop sending these messages - it really helps me - that i can say. I do pray for everyone here on the board and i know that we will survive. Thank you all very much. Shirley
                        \"With God all things are possible - remember He is still in the miracle business - just trust Him and keep the Faith\"

                        Comment


                        • #13
                          Re: Sob

                          Hi, Shirley,

                          Welcome to the board! For a bunch of adults who talk an awful lot about peeing we are a pretty normal and hopefully reasonably mature bunch.

                          Thanks for the prayers!

                          Rhoda

                          Comment


                          • #14
                            Re: Sob

                            Welcome Shirley from Shirley to another this is a great bunch of people, you will learn more and more and you will find everyone a great source as we are all living with the same thing in our own way, we are here to learn and give moral support when needed to each other as you can tell with all my rambling i've done, again welcome to the board

                            Shirley
                            Diagnosed 2003
                            Myectomy 2-23-2004
                            Husband: Ken
                            Son: John diagnosed 2004
                            Daughter: Janet (free of HCM)

                            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                            Comment


                            • #15
                              Re: Sob

                              Originally posted by Laoshur
                              For a bunch of adults who talk an awful lot about peeing we are a pretty normal and hopefully reasonably mature bunch. Rhoda
                              LMAO... I am a peeing madman today! I've lost six pounds already, and i'm just getting started folks! LoL. What a great age we live in where we have the opportunity to say such things to people who trully understand where we are coming from. In fact... i think i may just have to go pee now. Woo hoo! Life is good

                              Shirley, you do whatever you have to do to get yourself better, and you fight with your insurance company to get the care you need and deserve. I'll be right here along side you, my friend. Hey, maybe we can share a room at the Cleveland Clinic!

                              Please take care of yourself,

                              Jim
                              "Some days you're the dog... some days you're the hydrant."

                              Comment

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