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Wrong device installed
Had a new pacemaker implanted in Nov 2013... It has three wires, the new third lead wire was to "cure" the congestive heart failure--left side of heart. Supposedly CHF was the result of 32yrs (7 dual lead on demand pacemakers) was the right side of heart being paced.
Well, I should of had an ICD with pacing capabilities implanted instead because I have been having tachycardia, which has been going on for yrs with rapid heart beats so fast I couldn't talk. ICD is also needed for the CHF that isn't caused by disease but by pacing. So glad new dr knows what he is doing!!
I have suffered because the left side new lead wire had to be shut down to o.1 because of the constant diaphragmatic stimulation...quality of life has been almost none existence. Latest ER on my left side of heart is now down to 27%..... Always out of breath and so tired. And I just found out I could go into cardiac arrest!!! The new lead wire going into left side of heart won't do me much good if this should happen!
So I am again scheduled for surgery, this time with new dr. He will have to remove all implanted lead wires--the risky part of this long surgery. The first set of leads were implanted 32 years ago. However, 15 years ago one of the wires broke and drained the battery of the pacemaker which was less than 1year old. I was awake with just local numbing and the procedure taking only 45mins. there is a real good possibility of having 2sets of leads on the right side which will have to be removed. Scary!
This time the surgery will be in an operating room with a thoracic surgeon standing by if the artery gets nicked and They have to crack my chest open to stop the bleeding! I have total trust with the new dr because I have checked him out for experience with ICDs.....I had almost nine years experience with the "fired" dr--he seems to be only good for changing batteries! Being new to area 9 years ago, he came highly recommended but I am thinking he is in over his head when it comes to my more complicated heart electrical problems. So frustrated!!! And scared!!
Any thoughts on this experience??
The worse part of this (with the old "fired" dr) is that he would say he was going to look at my heart films taken back in Nov 2013 so he could find another blood vessel to moved the new third lead in the left side of my heart....he kept forgetting, blaming pacemaker tech, and promised (his words, not mine) to call me. He never did any of that....pretended I didn't exist or maybe hoping I would go away or maybe die??? My situation is very serious and it would appear that his pride is more important than his patient's life!!
Surgery (3-4 hrs minimum) is 9 days and counting.
Thanks so much for letting me vent!! Any suggestions or encouragement would be greatly appreciated--am only 64 yrs young!
5 Comments
Hi Tealady
by jane32 - 2014-08-26 02:08:55
Thank goodness you have found a new Dr, there are a lot of Drs that don't meet acceptable standards. You have had a very bad experience, no wonder you are scared. I don't know what to say to make you feel better except most people in your shoes would be scared too. Know that there are a lot of us on this site, that are thinking of you and sending best wishes. Keep in touch
Regards Jane32 NZ
Some thoughts...
by golden_snitch - 2014-08-26 03:08:07
Sorry to hear what you have been through.
But from what you are writing here, I cannot fully understand why you are so mad at your "fired" cardio.
Firstly, the ICD is not a must for someone whose heart failure is pacemaker induced. I don't know any guidelines that state that it is a must. Those patients I know, who received an upgrade to a CRT device due to pacemaker induced heart failure, all only got the CRT, no ICD.
Also, what kind of tachycardia do you suffer from? If you have had so many episodes, and are still among us, it sounds more like it's atrial tachycardia. If so, no ICD indication again, because the ICD is there to treat ventricular tachycardia. It won't do anything about atrial tachycardia.
Diaphragmatic pacing is a well known problem in CRT devices. Has nothing to do with the competence of the doctor, it just happens. Placing the left ventricular lead in the coronary sinus is tricky. Usually this problem can be solved or at least improved by turning the amplitude and/or pulse width down. If not, like in your case, relocating the lead might be necessary.
Thirdly, I'd not try to take out leads that have been in place for 32 years. If the doc needs to make room for new leads, take those out that have been in for the shortest period of time.
Wishing you all the best for your upcoming surgery!
Inga
Comments
by Tealady - 2014-08-26 08:08:44
Jane32NZ and Pioxen: thank you both so much for your words of encouragement! Very helpful!
Inga, I think many of your comments were out of line. Unless you are a dr, telling me I don't need an ICD implanted was hurtful and dangerous. You have not seen all of the test results from new dr. Pacemaker readouts don't lie...they record lots of information plus echocardiograms don't lie! Please don't give out medical advice! The ICD is not just for the heart failure, Ef 27%, but for the tach picked up by an EKG and pacemaker readouts, plus my symptoms.
If you are a dr, you should NOT be giving out this kind of medical advice! You don't know me nor do you know the rest of my medical history. You can do more harm than good!! I have been dealing with ins and outs of my heart electrical problems for almost 45 years.
As to the fired dr, not only has he lied to me, after more than four weeks he has yet to call with his plan of what he is going to do. I was able to get a cd of the films of my heart when he implanted the last pacemaker. Took just a very short time. Gave them to my new dr.
I am not his only patient with complaints against him for not returning phone calls and other procedural problems. No one from his office calls. We have not pestered the dr by constantly calling. I have personally experienced some very inappropriate behavior and unprofessional remarks! Thus, I have lost faith in his abilities. I personally cannot go into any more details because my husband is also a medical professional--heart is not his speciality nor is he a nurse, a PA, or a tech. Several years ago, I tried a dr from a heart hospital but he didn't have the expertise for my particular heart electrical problems, so I had to return to this dr. At that time I didn't have any other better choices. Now I have a dr with the knowledge and experience needed for my particular situation. Some times older dry don't keep up with new technology and research.
We are here to encourage each other, not play dr. I found your posts troubling.
Blessings!
Tealady
Update since surgery
by Tealady - 2014-10-02 07:10:09
The surgery went fairly well. It took 5 hrs instead of the predicted 3-4....I was "under" so it didn't matter to me :-)
The new heart dr was able to remove all but the 2 oldest wires...they were so badly deteriorated, he decided against removing them. When the laser cut thru the scare tissue on one of the oldest wires, some liquid oozed out! He had never seen this before. He sent two cultures of this liquid to the lab. Fortunately nothing grew!
The device he implanted was a Biventricular ICD because I had been experiencing short periods of tachycardia in both of the ventricles--not at the same time. The tachycardia was happening often.
The new heart dr told me that I have a very "sick" heart. Before the surgery, I could have gone into cardiac arrest and died.
After the surgery, they did another echocardiogram to measure the ejection fraction percentage...it was 2 percentage points worse which confused me. My old heart dr had told me that once the left ventricle was being paced by the device--a CRT-P--it would take care of the CHF...it would be gone!!
The new heart dr was not only surprised that the other dr had not implanted the Biventricular-ICD, but that I wasn't on any heart medication. I told him that the "other" heart dr told me there wasn't any medication for the CHF because it was pacemaker induced and would be corrected with the CRT-P he put in. Obviously he lied or was in over his head with the complicated electrical heart problems I have--I also have had a total heart block on the right side of the heart.
Thankfully, my new heart dr knows what he is doing; his speciality is the electrical system of the heart. I was very disappointed that the new device didn't instantly correct the CHF as my old heart dr had lead me to believe would be gone because the CHF was caused just by having the right side of my heart paced for 32 yrs!
Once my new dr explained how sick my heart IS--the ejection fraction was down to 26%--and it would take at least 6 months before I will feel noticeably better. He started me on a low dosage of two heart meds for CHF and said he will slowly increase the dosage along with adjusting the new implanted device, to help the left ventricle to pump better--stronger.
So... I am so blessed to have found this new heart dr who didn't waste any time to take out the other device and implant the Biventricular-ICD. Now I patiently take each day one at a time while pacing my activities. I now have hope for a future.
BTW...I now have a Merlin @ Home Transmitter. Between a great heart dr, the implanted defibrillator (ICD), and the Merlin, I feel so much better!
The TeaLady
You know you're wired when...
Your old device becomes a paper weight for your desk.
Member Quotes
Your anxiety is normal. It takes some of us a little time to adjust to the new friend. As much as they love you, family and friends without a device just cannot understand the adjustment we go through. That is why this site is so valuable.
Same device
by pioxen - 2014-08-26 01:08:27
Tealady, I just had the same device implanted. Mine is for standard HF without the Tach issues. I can't imagine what your mind must be thinking....I know I'd dislike having to go back for more surgery. However...as long as you get what you need...that's the real issue here. Once you get the CRT-D implanted...it's green grass and high tides!!! Good luck to you. Keep us posted.