I hope everything works out for you....and I sincerely hope you don't catch that nasty virus while you're in the hospital.
I'll say a prayer for you.
You hang in there. I'm sorry to hear your days aren't getting better.
Today I saw three doctors: two cardiologists and the electrophysiologist who implanted my ICD. It was quite funny as the two cardiologists had different view points on my treatment. I'm following the advice of my cardiologist who is located in my town and not the one at the Heart Centre in the next town.
Tomorrow I'm being admitted to the Heart Centre so the electrophysiologist can replace one of the three leads in my ICD - it's not functioning correctly and could cause the defibrillator to go off and we don't want that. I'll be there for 2 days.
So ...I have to make sure I don't catch any virus while I'm there. Sometimes I think I have a black cloud over my head. You take care!!
Thank you, but I must admit that I oringinally came here for selfish reasons, such as finding answers to my problems. I just have had a lot of experiences and I thought it would be good to share. I know how it feels to be told that your heart is failing and you're going to die. I also know how it feels to be told your in End Stage Renal Failure and there's not much hope for survival. So I know what it's like to be scared, and feel alone. I know what it's like to feel like no one else could possibly know how you feel, or at least you feel that way.
I have doctors, nurses, lay people all tell me to get well. I know that it would take a devine miracle for that to happen. I know that I won't qualify for a kidney because of my heart, and I won't qualify for a heart because of my kidneys. I know I feel the life slipping further and further away from me everyday, and coming to this bulletin board and sharing what I've learned, and my experiences, somehow helps.
So, I guess the selfish reasons are coming full circle. I am here because it helps to know I'm not alone.
well here's another one praying for you...
As long as we don't miss any opportunities that God may present to us, then I guess we're doing all we can and the rest is up to Him.
I was just reading some of your other posts to other people and you certainly provide alot of hope, encouragement and superb advice to those who have questions. I know what the "stars" mean now, so you are GOOD!!! And you only joined this web forum in Dec 09!! YOU'RE FANTASTIC!
Yes, I pray almost constantly, and there are several other people praying for me, yet I feel myself slipping away.....perhaps it's my time, huh?
I'm just wondering if you do any praying. I find, for me, that it helps. In Dec, before I got the implant, I was sure (if the ICD didn't work), that I'd be dead within 6 months, that's how bad and exhausted I felt. I had a very sick feeling in the pit of my stomach, knowing my time was getting short. The doctor said if it was going to work, I should feel better within a couple of weeks. Then 30 days after the implant, I miraculously started feeling better.
Miracles do happen!! I am glad you are trying to stay positive through this, I think that is very helpful for you.
Most days I try to stay positive, but I have had several days in a row where I feel death trying overtake me, and it's exhausting. Perhaps I've caught a lesser virus that is magnifying my symptoms, I don't know. I do know if I try to tell a doctor about how much worse I'm feeling, they're answer is..."well, look what you have wrong with you", and that is as far as it goes.
I guess, not enough is being done, from my perspective, to help my situation.
I will be starting dialysis in July, providing I make it that far. I've been told it will make me feel better, by some, and others tell me it will kick my butt. If it kicks me, I may not be around much longer.....or at least that's the way I feel.
I wish I could go back about 3 years, and escape this mess. You know, you're comment about me being "in a pickle"....those were the exact words my cardiologist used to tell me how bad of shape I'm in......I guess I've gone full circle now.
Very scary indeed. We have the same super bug in our hospitals as well. I would certainly hate to work in any hospital these days. I can see your delema with cardiologists in your area. You're in a pickle!! In that case, just don't tick your doctor off and HOPEFULLY he'll give you what you need.
Please let me know how your appointments go and especially the appt with your heart doctor. "I HAVE TO LIVE AND I WILL LIVE!!! ...say in front of the mirror 5 or 10 times a day... You must stay positive and determined to get the results you need.
I don't mean to sound like I'm lecturing; I just want you to get well.
Sorry.....Yes, my husband caught the virus in the ER. Then while taking care of him, I caught it, 6 months later.
He seems to be doing well, with some days still leaving him exhausted. My prognosis, on the other hand is pretty grim, with heart and kidney failure. All of this from a Super Virus, caught in then ER of our local hospital....
Kind of scary, huh?
I could switch cardiologists, however, I live in Now Where USA, and the cardiologists are all out of the same office building, and they work closely together, so my choices are limited.
I "could" travel several hundred miles to find another one, but then I would have to start all over, and taking a long trip causes my CHF to give me a harder time.
I do plan to talk to my cardioligist about the implant, but it is up to him whether I get one or not. His associate did my heart cath in November of 2009, and found nothing, then he just walked away and never kept his promise to give me a full report afterwards....I ended up getting the report from the kidney specialist who was working with me. Anyway, I complained to hospital administration(they gave me a survey to fill out, asking if anything could have been done better during my stay)...stating that I felt for the amount of charges for the heart cath, I thought he owed me a report....well, since then it's like they are hoping I will just go away(die) So, this next appointment ought to be interesting.
Your husband caught this "super bug" virus in the hospital as well?? Forgive my ignorance about your health care system now, but if things don't progress next month during your cardio visit, can you switch to another cardiologist who would be interested in giving you an ICD?
I could check to see if I still have the virus, but until I went to see the kidney specialist, not one doctor would believe it was a virus that caused the problem. They kept saying that it was all caused by poor BP management.
When my husband tried to convince them of the virus, they tried to send him to see a shrink.
However, now, it shows in both of our records that it was a nasty virus contracted in the ER, and gives the long list of conditions it has caused. Not that it does any good, but at least it not "our" fault that we're both dying.
I am truly interested in a ICD, but my cardiologist seems to be a bit disenchanted with me because he was wrong about my arteries, and heart. He said he thought he would find all kinds of blockage, and there was none, which left him with egg on his face, and I don't think he liked that very much. I will find out next month, though....if I make it that far.
Today I have blood work, next week I have appointments with my kidney specialist, and fistula surgeon, and a ultrasound, then around May 13 I have a echo with the kidney transplant team, along with a class on the same day about kidney transplant. After that, I just don't know until July, when I'll be starting dialysis, also, IF I make it that far. So, I am getting appointments, it just takes time.
Sorry to hear you've got kidney problems as well...you're just having the time of your life!! ...just kidding.
I think my HF is heredity...I'm scheduled to see another cardiologist in May or June to tell me whether it is or not. My arteries, like yours, are just fine. If you could just get an ICD then hopefully it would increase your EF and you would feel so much better. Then you would qualify for the kidney transplant.
One important thing I've learned about the medical field is that I have to take complete ownership of my condition and do everthing in my power to ensure I stay alive and as well as can be. It's excellent that we're able to use this forum to find out more about our conditions. I always have to follow up with appointments, for instance, last October when I saw my cardiologist, he told me he would immediately send my info to another doctor who would decide whether or not I would qualify for an ICD. Three weeks later I phoned my cardiologist again and spoke with his assistant who said she was just mailing out the info today. Today???? Thank goodness I checked and a week later I had my appt with the ICD doc (Dr. Toole). Another example...my recall appt after having my ICD for a month - Dr. Toole said he wanted to see me again in 3 months as he may need to do another procedure...well, 2 1/2 months later and no appt. So I phoned this clinic and the lady said I'm giving you an appt in May or so and I said "No, Dr. Toole said in 3 mos", so she checked and said "You're right, it should be this month". I find you have to be checking all the time. I wouldn't have had my ICD in Dec. if I hadn't followed up; his assistant was scheduling it for January and I had to be in Jamaica for my daughter's wedding at that time and because of this Dr. Toole told me he wanted it done asap in Dec. Anyway, I could go on and on... I'm sure other folks have better luck than I do...
Can you check with your regular doctor to see if you still have this virus?
This ICD constantly paces my heart since it is so enlarged and can't beat properly. I JUST LOVE this device. I hope you can get one soon.
I haven't been evaluated for a heart transplant, but I'm working towards a kidney transplant, and because of the heart, they don't want to give me a kidney.
I figure that if I don't qualify for kidney because of my EF, then I probably wouldn't qualify for a heart because of stage 5 renal failure. It just makes sense.
Some days I think I should just be happy with being able to arrange my own funeral....at least I would know I was going out in my own style.....
The truth is, I just don't know why they haven't done the defib implant. A few months ago my cardiologist mentioned it, then sent me on my way, telling me not to come back until I heard from him again.....I finally heard about a month ago, but he's a busy man and my appointment isn't until next month.
My heart is enlarged and weak, and when they did the heart cath, they didnt' find anything, like clogged arteries, etc. So, I think they were a bit taken aback, and were trying to come up with a reason for everything.
I still contend that everything was caused by a virus that I had for about 7 months....actually I'm not sure I'm over the virus. It's hard to tell because of the way I feel now days....extreme weakness, etc.
In the meantime, I've had surgery twice for a dialysis fistula. The second surgery was May 30th and I'm still healing, but it's looking pretty good. They tell me I'll feel better when the fistula is ready for dialysis treatments. They even promise that my EF will improve, perhaps enough to qualify for a kidney transplant. Right now I would have to have a significant improvement to qualify for a transplant.
Anyway, because of the kidney failure and heart failure, I think they are thinking I'm a lost cause, because they sure aren't in a hurry to do anything for me.
Have either of you considered being evaluated for a heart transplant or a LVAD?
Hello to both ladies,
I'm a new member to this health forum as well. My EF, when diagnosed in May 09, was 20% and then with meds it came up to 27% with essentially no change in how I felt. In Dec I received an ICD (implantable cardioverter defibrillator) and after a month I started to feel better and better. I now have a quality of life. Before the implant I was sure I'd be dying within 6 months, that's how bad I felt. gmachris518, why have you not had an ICD after 2 1/2 yrs from being diagnosed?? For 70% of the recepients it make a significant difference between life and death.
Is 5% your EF number? I'm not a doctor, but I know that 15-20%(my EF) gets me Coreg 2 x a day. Coreg us supposed to help your heart beat stronger. So far, after 2 1/2 years I haven't seen any improvement, but that doesn't mean it wouldn't work for you.
In any event, at 15-20% my doctor is telling me I'm going to die and the only treatment is a defibulator implanted in my chest. The defib is supposed to shock me back to life if my heart stops.....doesn't mean I'll stay alive, but perhaps give me a chance to get to the ER.
It's a grim picture, except for that fact that when a person has some idea of how long they have, they can do a lot of things...the most important thing to do is, whatever it is that will make you happy. Live for YOU......and if it's not you that you're writing about, then allow that person to do whatever it takes to make themselves happy.
I decided a long time ago that I'm going to die on my terms, and not on everyone else's. I'm no longer taking advice on what I should do to make my time longer, but instead I'm making the time I do have count by doing what "I" want to do. It may sound selfish, but when all is said and done, it will be my life that is over, no one else's.
Sorry, I can't be of more help. I do hope the best for you. Keep us posted.