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  • shirleymahoney
    replied
    Re: I am down

    Good Luck Burt

    Don't let them keep you too long, but IV Lasix is great and it will make you feel better too, my lasix finally decided to work yesterday after 5 days of taking it , 160mg is alot to take in one day

    Shirley

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  • Burton Borrok
    replied
    Re: I am down

    Hi Rene,
    I’m really, really glad you posted. I hope you realize that I and some others jumped on you because we care about you and what happens to you. With us, taking care of ourselves is not a simple matter, and to see someone go so long between tests both upsets and frightens us. We do however admire your courage and honesty in posting your situation and feelings.

    Let me tell you a little story. I currently have about twelve to fifteen different diagnoses, including such things as Familial Hyperlipidemia, Coronary Artery Disease, Diabetes, from time to time CHF, water retention problems, HCM of course, etc etc. In 2003 I was hospitalized seven times. The first time was for my fourth heart cath and stenting. Instead of being on the table for under an hour and in and out of the hospital in a day, I was on the table for six hours over two days. I wound up with pneumonia, my blood pressure was down to 70/40, and my kidney’s almost failed. (Found out that the bottom half of my right kidney doesn’t work anymore.) This was followed very shortly by passing out a few times and having a stroke. I was laid up for two and a half weeks with that one. I also had my renal arteries angioplastied and stented, and my iliac arteries the month after that. I had two episodes of HOCM in December and I was hospitalized both times. They gave me three different narcotics by IV to get my heart under control – and that was when I was finally diagnosed with HCM.

    Life for me is a constant round of doctor’s visits. At the moment I’m waiting for authorization from my insurance company to get my legs Echo’d, as there are some blockages that may need intervention (stenting in my left leg and surgical removal of the blockage in my right femoral artery.) Luckily my wife just got authorized (after previous denials) to be seen by the epilepsy clinic at a local hospital where we think she will get better care. (She got epilepsy at the age of 45.)

    My schedule for tomorrow is;
    1. Getting up in the morning and having a fasting blood test run for my endocrinologist’s appointment next week.
    2. This will be followed by brunch.
    3. Then we will run up to the x-ray lab where we will pick up reports of my chest x-ray and my wife’s wrist – which she had previously broken in a fall, and where she now has degenerative arthritis.
    4. This will be followed by a light lunch.
    5. Then it’s off to the dentist for a one hour check-up and cleaning for each of us – yes I will be pre-medicated.
    6. Then it’s back home to pick up some changes of clothing, then off to the ER as per my cardiologist’s instructions. (I have a water problem in my legs, ankles and feet that will not respond to drugs, - plus a few other symptoms.) After that, it’s anybody’s guess.

    I saw my PCP last week and she said, “We just have to get your lipids under better control,” Then she saw the three drugs I was already on for this problem and said, “There is nothing else you can take.”

    I’m finally getting my blood sugar levels under a little better control – at least to the point where I have to move more cautiously. I am taking glyburide pills for it plus, at the moment, 155 units of two different types of insulin per day.

    My kidneys, at least the parts that are still working, have a great deal of stenosis, and I dance closer and closer to needing dialysis, although I have avoided it successfully so far.

    So that’s where I’m at now. My HCM is not very far progressed, but I’m very symptomatic, and it’s always a big problem getting someone to take the symptoms seriously. I have problems walking anywhere, and just bought a scooter out of pocket after being turned down by both Medicare and the VA. The VA was insulting enough to tell me to exercise more in their denial. If I were capable of exercising I wouldn’t need the darn scooter in the first place. Ah well - - -

    Please get the echo dear heart, and give the holter another go-around. It’s amazing the curative powers that little recording devise has. I was thinking of buying one for myself. - Just think of all the money I would be able to save on drugs.
    Burt

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  • cynthiaG
    replied
    Re: I am down

    Ginny,

    As others have mentioned, you are not alone feeling this way. I too have days when I feel depressed . I'm 50, so quite a bit older than you, but depression can happen at any age, especially with a chronic condition. I get like this when I have an AFIB episode. It still scares me and I get nervous and somewhat depressed right after. I, like yourself, think of my son (he's 10 yrs. old) and want to be around for him until I'm 80!! It's only natural to feel this way. As someone else has mentioned, it will pass. As I've said many times before, this website was my saving grace and Lisa is a godsend...we are all here for you!!!

    Leave a comment:


  • ginnilea
    replied
    Re: I am down

    Dear everyone,

    Thank you so much for your many responses... I am planning on seeing someone. I just hate taking drugs... I pride myself on the fact that I only take enough lopressor to kill a horse once a day

    Within the last year I was in a terrible car accident with my mother, she drove off the road. We rolled 40ft and dropped 20ft and landed upside down in a creek. I swam out the back window and my mom was trapped in the car. People who saw the accident ran down the hill, flipped the car and I jumped on her and gave her CPR. She came back quickly and is fine now. Just a little too much reality for me.

    Then a month ago, my aunt, who is like my mother died of cancer. Except she died the minute her husband left and I was alone with her. Not that I don't see people pass often being a nurse, but my aunt was young (60) and we were really close. We had our diagnoses at about the same time and would call each other when we were down. I miss her a lot. My last two years have been as tragic as that.

    The good news is, I thinks have got to get better, or I hope so... I think my biggest fear is suffering to die... I see all the complications that can rise with heart disease and boy the list is long.

    You guys are great, really. I am so thankful I have so many resources to talk to.

    Ok everyone, poor Rene... Sweet dear, don't let everyone get you down and don't be sorry you posted. Your post meant a lot to me. Everyone means well. It is so scary when you sit there at the doctor's office waiting for the results of your last tests. Sometimes it feels better not to know, to just pretend this all didn't happen. but c'est la vie... what else can you say??? We were all given a wild card in the hand of life and the way we win the game is how we play our cards. I don't think you are a bad person and I do understand your feelings about not seeing your doctor. Unfortunately the picture of life is bigger than just ourselves and how we feel and you have to go to the doctor. You will feel better knowing and it will help your family too. Please feel free to contact me anytime, I am moving out your way soon to Arizona. Chat with me any time. I often have felt the same way as you do and not posted because I don't think I have anything to add. I am so glad you posted, you made my day.

    Thanks,
    Ginny

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  • Laoshur
    replied
    Re: I am down

    Rene',
    Please do not take our comments as criticism. We are all just worried about you. Please understand that I have gotten my butt kicked around this forum several times for going to China when I needed an ICD. So, please forgive me if I came down hard on you!
    Rhoda

    Leave a comment:


  • Sarah
    replied
    Re: I am down

    Not wanting to take care of yourself is a sign of depression. Beta-blockers can make you depressed, as can having a serious, chronic illness --fun, no?

    Please see about getting some support around this as your family (and all of us) want you to be as healthy as you can be.

    Take care,

    Sarah

    Leave a comment:


  • Linda
    replied
    Re: I am down

    Rene', I have to thank you for posting and so honestly. There is no doubt in my mind that you are not alone, actually, I know it for a fact. It's a story not many people would be sharing. Some others will see themselves and know they are not alone. We all cut corners - finding the time or money can be and often is a real problem. Then there's the story we've all heard so often about the response we get on the office end. I know one in my family who has pretty much thrown up his hands and seems to think "just let the chips fall". I suspect if you'd been feeling horrible enough, you'd have been keeping those appts. Time just flies by. Everyone here feels very strongly about taking care of one another, it's a great family and we all want the best for everyone. Please post again and let us know how things are. Linda

    Leave a comment:


  • Rene' Koenig
    replied
    Re: I am down

    I really, really wish I hadn't posted.

    Just to clear the air...I'm not trying to "show" my Cardiologist anything...or anyone else. But, as you all know, ECHO's are expensive, even with insurance. I DID go to my appt. in June. He listened to my heart and we talked a bit. He had no recent tests to look at to give him any info. That's when he scheduled an ECHO and holter monitor.

    Rene'

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  • Reenie
    replied
    Re: I am down

    Rene',

    I understand how you feel about going to the doctor. My husband probably wouldn't go if I didn't badger him. He hadn't had an echo in about 2 years and didn't think he needed one for another few years but when he saw a new cardio a few weeks ago they did one in the office so that alleviated another trip. I know we all sound a little harsh, but we worry about you. Please don't take our concern as anything other than caring.

    Reenie

    Leave a comment:


  • Laoshur
    replied
    Re: I am down

    Ginny, we certainly do understand as you can see from so many responses. A couple of years before I was diagnosed I spent a couple of years going to a therapist and part of that time seeing an absolutely kookie psychiatrist so I could get on antidepressant and antianxiety meds. Several times during that time I said to the therapist that I really wondered if the whole thing might be physical. But I was in an extremely stressful work situation and I was dealing with issues from my childhood, so she always dismissed that. In spite of all the things that I have had go wrong in the past couple of years, I still feel better than I did then. So, getting help for your depression is not something to avoid and if your PCP is on leave, find someone else who is not. You would not allow your leg to not get set if you broke it just because the PCP was unavailable!

    Rene', as far as your situation, what do you think is going to happen if you get an echo???? I can understand the Holter because that has also been my experience and that of many others here. But, an echo? After three years?? I think you are way past due! So, get back on that phone and reschedule at least the echo!!!

    Rhoda

    Leave a comment:


  • gayle
    replied
    Re: I am down

    Ginny,
    You have NO IDEA how normal you are. I am having a bad HCM week myself. My neice is visiting me this week and just doing extra little things like taking her swimming and to the mall when I get off work off kicking my butt . My whole family has always thought of me as the crazy lively one, but Im not feeling too lively right now. I am sitting here at work today dreading getting out of my chair. I am only 30 (might seem old to you but seems young to me). I have a 2 year old to raise and husband who is 30 going on 3. I worry alot about what would happen to my son if I am not around. Personally I think my husband would take him to Hooters every day and to church once in a blue moon . Not exactly a mothers dream come true!! It really gets me down and worried sometimes. I just have to constantly remind myself that sticking around is worth fighting for. Keep coming here and reading posts. When I compare myself to my friends and family I get a little envious but when I see that others are having similar and sometimes much worse problems it helps me put things in perspective. You are not alone. There are so many people here who understand and care. Come vent whenever you need to.
    Noone is guaranteed tomorrow. There are 15 year olds who are healthy as a horse and die in car crashes and 80 and 90 year olds who have lived long happy lives even with problems like HCM. What is important is that we are given today. Make the most of it and the future will take care of itself (... and yes I often need to take my own advice, but I believe its true). Keep your chin up and come here for support often as you can!!

    Leave a comment:


  • Burton Borrok
    replied
    Re: I am down

    Dear Rene,
    How clever of you – not seeing your cardiologist in three years. I guess you really showed him, huh? Now I see you’re trying for that elusive fourth year. I guess after that you will have to find another cardiologist because this one will have dropped you, and you’ll still need those prescriptions renewed. Or do you plan on dropping the medications also?

    Get a grip, girl. What are you trying to prove – that if you don’t take care of yourself the condition will go away? It will you know, - but I don’t think your family will be very happy with the result.

    I hope you realize that I normally don’t yell at people, and I don’t like the experience. About the holter monitor, most of us know that it is the magical cure for many different heart ailments. When you’re wearing it try doing things normally – the things that you have difficulty with – you just may overcome the magical cure properties of the device and get some readings the doctor can use in your care.

    Please – make another appointment with the cardiologist, and this time, follow through.
    Burt

    Leave a comment:


  • Rene' Koenig
    replied
    Re: I am down

    Ginny,

    You are definately NOT alone in your feelings. Today I went shopping in Columbus for the day with my daughter, sister and nephew. We haven't done that since we took my daughter to buy a prom dress 6 years ago!
    I was miserable, but kept chugging away, trying to keep up! Melissa kept asking if I was ok, and I kept telling her "oh yea...I'm fine! I was in the dressing room trying on clothes and thought I was absolutely going to pass out! So, I sat in the dressing room for about 5 minutes just sitting there...trying to become "un"dizzy, "un" lightheaded and have my heart stop beating all funky! (that's probably not the medical term is it?)

    And, as far as following through with Dr. appts. I do the same thing! In June was the first time that I'd seen my cardiologist in 3 years. Ridiculous, huh? I would call and ask to have my prescriptions for Verapamil and Norpace refilled yearly, with the promise that I'd make an appt. Finally, the nurse told me that if I didn't come in to see my Dr. that they were going to release me from the practice, that being monitored is very important, blah, blah, blah...! It wasn't that I have felt good over the past 3 years, I just didn't go. He ordered an ECHO and holter monitor when I was there in June, I cancelled the appt. and said I'd call back to reschedule. Still haven't. My feeling on a 24 hour Holter monitor is that it is such a waste of money (for me anyway). It never fails, I feel fine during that time!

    There are days that I feel really down, too. As you can probably tell by my negative attitude and rambling, today is definately one of them!

    Fortunately, everyone here UNDERSTANDS! We're all very lucky that we have such an awesome support system here and that we can whine when we need too! I rarely post, or reply to posts because I just don't have the knowledge to share with others that so many people have. I have nothing to contribute. I read everything though, and have learned a great deal. Still have a zillion more things to learn!

    If nothing else, I want you to remember that everyone has bad days...physically and emotionally. This wonderful group of people will always be here for you. Keep your chin up, tomorrow WILL be a better day!

    Rene'

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  • Nancy C
    replied
    Re: I am down

    Ginny,
    While I haven't spent a lot of time sleeping, I certainly have spent a lot of time crying as a result of this diagnosis. It is very frightening. I want to share what helps me when I'm faced with a situation like this. When I feel down during the day, I tell myself "Stop, I'll deal with it at 7:00 tonight." Then promptly at 7:00 that night, I take some time to acknowledge what I am feeling. I'm able to work and concentrate during the rest of the day. I've had two other very difficult experiences in my life that I've used this and it truly works. However, there is nothing wrong in seeking professional help. Maybe it is one of your medications. We live for today so do what you can to make each one the best it can be.
    Nancy

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  • Linda
    replied
    Re: I am down

    Ginny, From one nurse to another , think about where we work and what we see on a daily basis. Remember how easy it is to get every one of those symptoms as you are sitting in class and learning about them? Then you get hit with the diagnosis like HCM, and your mind can really run wild. So often, you hear, "Well, at least you're a nurse so you know all about it." That's just not true, and even when you do know about it, you can't always make yourself be objective or sometimes even reasonable. You have a physically and mentally strenuous job, your meds are tiring and can even cause depression. Don't be afraid to call for the help you need, even if you are not needing it at the time you can accomplish the call. Get on top of things and maybe you can prevent the down times from going so low. Someone is covering for your doctor, explain what she told you before her leave and they may be just as helpful or refer you to someone who is. We are all here for you and wish you the best. Please keep us posted. Linda

    Leave a comment:

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