Living in Agony
I have a two wire Medtronic pacer/defb. Installed roughly 8 years ago.
I have Idiopathic Cardiomyopathy. Ventricular tacha.
and congestive heart failure. One of the atrial valves has a slight leak.
My EF is about 20-23.
60 yrs old.
BP low normal
I had a change out on the pacer about 3 years ago.
Also, I was given an ablation about 2 years ago.
Since I have had this pacer put in ...I have gone down hill in ability to work, play, stay active. I fear for my life now as abilities ebb.
About a year ago my Rxs were changed through a dramatic drop in the street consciousness failure followed shortly by 13 "therapies" in a row. I was in hospital by then ...and they stopped all this drama by giving me Cordorone (ammiodorone).
Other Rxs were adjusted down.
Since taking this Cordorone, I have suffered in almost every way ...except that there is no V tac in my heart anymore.
I have lost strength to the degree that I went from a stage II to a stage IV in about 4 months.. I can hardly walk across the room without panting and puffing. I'm roughly good for a 300 foot walk now (used to do 2 miles a day.)
Going down hill fast ...if feels like.
I used to teach and be a dancer as well as physically active. That all was bled off almost totally in the last 4 months. I have a hard time enervating to just walk outside on a beautiful day, go get groceries or pick up my mail.
I was not able to sleep ...and they got me hooked up with a CPC device. I can sleep now ...but it is only with drugs to help.
I believe this is a side effect of Cordorone. For those that don't know ...they strap a full face mask with a tube running to a machine. Mask covers face and nose. It's a challenge to sleep with ...without drugs.
So now I have a CPD machine I have to cart around wherever I may go ....to be able to sleep.
I feel rotten, I can't do anything active ...even simple things, without exhaustion. Pant my way through the day ...even when I am sitting down.
The docs are happy ...no more V tac. They did their job.
Now however, I feel like I don't want to live anymore. What's the point? To continue to live in constant low level pain, be without use or purpose to do anything due to low, low energy and strength. Obligated to two machines for the rest of life. Then there's the Drugs regularly, The constant pro time blood checks.
I'm 60 years old and in perfect health otherwise. After the way the pacer has been handled by "the system" the way it was promised to work, etc. (I made the choice to do it and take full responsibility for that) , I have no interest in going through more agony with a heart transplant for a few additional years ...and pain ...and people guessing at what the problem might be. (the docs want to do this transplant.)
If someone knows of an approach on the actual health questions I have with treatment of the heart V tac. A Clinic or specialized Doctor? Any thoughts I'd appreciate?
I can relate to Charly and his frustration. Sounds like you are suffering a LOT with no end in sight. I send as much hope to you that is possible.
I'm in the same boat except Im 60. I have been healthy in all ways and still am ...except for a Medtronic.. PC/DFB I've had for two change outs. I also have had an ablation. Problem is Vtac.
For the last 7 years I have taken drugs that did not help the situation much. I was generally "therapies" by the pacer roughly 3 times a month. Ouch! Add to that a run of 13 back to back therapies that put me in the hospital for a week last September ...as they transfused me to Cordarone. That stopped the shocks. It also stopped my life ...my abilities and a life with little pain. Now I live in pain 24/7.
I can't sleep (now I need CPC machine plus 10mg Ambian to get a lousy nights sleep.) The face mask gizmo is horrible to endure. Thought I'd get used to it. Nope. Now ...I need 2 machines to stay alive and more Rx's.
My energy level is at an all time low.12weeks ago I regularly walked 2 miles daily. At this time I am lucky to walk 300 feet. Forget steps or hills. Add slight headaches, slight nausea to the breathlessness and pain.
I have found this Cordarone a very toxic drug (100mg daily) Anyone else out there using this drug in a happy way? Apparently there are no other RX's that work for me according to the doc.
One of the side effects is gasping and wheezing all the time. I am constantly in agony with this. NOW I have had two "therapies" shocks recently even with Cordarone.
I have V tac, an larged heart, Cardiomyopathy. is 22. They suggest all they can do is to implant a new heart. I don't want to go through with that given their promises and poor effects of the pacer. Rejection drugs and the rest. Sounds like it could be a nightmare beyond even the pacer.
I don't think I could be much more miserable. I see no point in fighting with this as my sense of self is that I am the tortured, living dead ...waiting for yet more abuse from scientific solutions.
I am ready to die. I could go on living/suffering like this for decades. My abilities continue to fail and fall.
Why live like this with little or no hope? It is against my spiritual beliefs to take my own life ...but that option is on the table if things don't change.
Anyone have some other ideas that I am missing here?
I have been poking around looking for possible solutions but have come up with precious little.
I would appreciate any thoughts in any regard on this. Is there some magic clinic that turns miracles as it treats the heart? A last ditch place I should contact?
My love and best to all of you. Blessings and grace to those of you with pacers, may you live in peace and without pain.
BJ
9 Comments
Franks advice
by pete - 2009-08-26 03:08:34
I think ElectricFranks advice is pretty level headed. I am sorry you are felling so bad. We all have to faceup to reality one day.I wonder what you can do other than take Franks advice. VF as you know is really life threatening.I am a great believer that a first rate diet low in salt and hopefully alchohol free is a great help in lifting the burden on body on soul. I am a great believer that somewhere there is another stone yet to be turned over. Be at peace with youself and try to remain always in a state of equanimity. Cheers Peter
A few more comments
by ElectricFrank - 2009-08-26 06:08:20
First off, thanks all for your response to my earlier post. This is a difficult subject and I was a bit hesitant to be so straightforward.
The feeling of being in control of our life, treatment decisions, and death has a major influence on quality of life. I have spent the last 30+ years of my life exploring it. It has made it possible for me to have almost painless back surgery, and a pacemaker implant without anesthesia. I have also come to the place where I assert my right to die on my own terms whenever and however I decide. This has freed me from the influence that the fear of dying otherwise have on me. The interesting thing is even though this right is constantly available, I have never come near to ending my life. I'm just having too much fun even during the rough times, but things could change.
frank
don't give up
by mike thurston - 2009-08-26 09:08:47
Sorry things are so desperate for you right now. Please don't give up. The others have given you good advice. Find the best Doctor at a good hospital (Cleveland Clinic etc.) and see what you can do. I have a 3 lead Medtronic ICD/PM and do fairly well. I have given much thought to a heart transplant and if I would do it. In the last week I have read the stories of three different transplant patients and they are living meaningful and active lives. Two of them are doing Ironman type triathlons and one has returned to competitive power lifting. The one guy put it so well. After years of no fixes (he survived two types of cancer but the chemo destroyed his heart - 4 years on transplant list) he saw the heart transplant as a great opportunity to actually be able to fix the problem and live a better life. I was on Amio for about two months and refused to keep taking it as I was going down hill and scared to death of the stuff to begin with. If the Doctor is content with no V-tach and does not care about quality of life then I would look for someone who realizes that just being conciuous is not living. Best Wishes,
Mike
Dealing with situation
by ElectricFrank - 2009-08-26 12:08:08
It sounds like you have explored most of your options in your mind, which is a good thing. Have you been to any of the major heart hospitals. I haven't had any experience with them, but from posts here it seems like some have had good luck with them.
I'm 79 so near your age and have given a lot of thought about the reality that some day I will start to go down hill. Right now things are great and am in good shape. Based on my own thoughts I would suggest the following:
Get an appt to discuss your condition with whichever doctor you feel comfortable talking with. Be straight with him/her. Tell them you want to know how they see your situation going forward. I always try to help them by asking specific questions. Am I likely to die in the near future? (I like to start with the difficult ones. It sets the stage for honesty) If not what kind of life can I expect. Make a list and insist on getting answers. I you feel you are getting a run around be honest and suggest that you don't want to make them uncomfortable. Could they suggest someone else.
You have already done some of this it seems. A decision against a transplant makes me feel you aren't desperate to stay alive at any cost. Coming to grips with being ready to die is also a positive thing.
For me the ability to let or bring life to an end is very freeing.
I hope my thinking out loud will be helpful. If not feel free to forget it.
best wishes,
frank
DNR
by ElectricFrank - 2009-08-27 01:08:48
Where do you live? In California and I thought in the US that the doctor wasn't involved in the legal execution of a Do Not Resuscitate order. All I needed to do was to prepare the document with my wishes spelled out and sign it before a notary. I then made copies and had them inserted into my medical records at the local hospital, my GP's, and the cardiologist office. I also keep one prominently displayed on a table at the entrance to my home, and in the glove box of my cars. At one point where I called 911 for a ride to the hospital when the pacer was losing capture, I mentioned the DNR to the EMT crew and they immediately notified each other and the ER of it.
A doctor who administers resuscitation when he/she knows of the DNR can be found guilty of abusing a patient. While this regularly sticks it is worth mentioning.
The important thing is to be clear in your own mind about your wishes. The medical folks deal daily with patients who despite a wish to hold treatment are anxious to have it when faced with dying. It is a very impactful time.
frank
Private Message
by ElectricFrank - 2009-08-27 02:08:36
I just realized you might not notice I have sent you a private message. Look in the Member Menu in the upper right corner of the page to find it.
frank
Ending Thankfuly
by Brittain - 2009-08-27 12:08:54
Thank you all for your thoughts. They have been remarkably helpful.
Let me be clear for those that seemed to not understand my purpose here.
If there IS something I can do to better the situation ... I will do it. I only ask that the pain stop. If I can't stop this weakness and pain I wonder how much I can take. This is the game now. Some Zen thoughts indicate that the more pain you accept ...the more compassion you develope. So Now I play the game of accepting the pain which includes hopelessness, seeing where it will lead me. It's an adventure as each moment of pain is fielded. Clearly, being understandably depressed can make it hard to be clear. Admittidly I am in wonder about it. Apparently depression comes with Cordarone as well.
After living a happy, blessed life and now ending like apparently this? I don't fear death. I would welcome it.
What I "fear" is being forced by electric shocks at some mechanical whim, to keep a sick heart beating for years or decades, while I waste away in agony laying in a bed. He's ALIVE! Keep him alive at all cost! (he has good insurance.)
My doc refused to sign a Do Not Res. document. I'm going to obligate him to this or find a new doc.
Thomas, your thoughts were very helpful and I'll discuss these with the doc.
Frank, your input was exceptionally excellent. I can relate deeply to all you suggest. I'm just a babe when it comes to dealing with this kind of pain. Until the pacer ...life was sweet!
Question: How could such a sweet, lovely life ...end in such a painful way? I'll endure the "experience" for as long as I can ...and then I'll do what I have to do ...one way or the other.
I appreciate all your thoughts and suggestions. Blessings to all of you for your compassion.
BJ
You know you're wired when...
Intel inside is your motto.
Member Quotes
Without this little machine, we would not be here.
living
by thomast - 2009-08-25 08:08:03
My story started out sort of like yours. I Oct of 04 had atwo wire unit put in, and went on cordorne, within two months I was so out of breath I would walk 50 feet to mail box, then rest several minutes before walking back. Gave up trying to walk down the street. after about 4 months took me off caldrone, put me on Sotalol. Breathing improved but was too sick to eat, lost 40 lbs. in 3 months.Finally in May they replaced the two wire unit with a 3 wire bi-vin in syvc unit. At the same time took me off sotalol and put me on Tikosyn. As far as I am concerned it is a miracle drug. Also on coreg accpril and warafren. Within a week I was walking several blocks. My EF is still only 20/25 % but I do pretty good. Walked 1 mile this morning, later I painted an air conditioner cover I made, then replaced a landscape timber around a flower bed that was rotted.
Went to the hardware store, then wal mart, and the bank. Cleaned up my shop a little, talked to my neighbor about us buying some sod. So I am leading a fairly normal life with CHF. Just cannot do too much at once, or work too hard.
Thomas