shortness of breath



I had a Revo MRI sure scan pacemaker put in on Feb. 5th and have had shortness of breath constantly ever since. I've been rushed back to hospital and admitted 4 times, had every test know to man done, including 2 heart catheterizations and they found nothing, 4 months and 20 days later the doctor changed the pacemaker settings from 60-130 to 60-150 and turned on the activity rate response function. As soon as he had the pacing tech change the settings, I noticed I was able to breathe again when I was released from the hospital. When I asked him what made him change the settings, he said I had did every thing else I knew to do. I was getting only up to 130 beats a minute of blood and oxygen, and then when it was raised I received 20 more beats a minute to my heart and lungs ! Huge difference!

It's like I had a governor/restrictor on my heart, like they used to install on older cars, for restricting the speed, until the settings were changed/lifted.

I'm very upset that it took the doctor 4 months and 20 days later! He has apologized, but after my misery, and him billing Medicare for hundreds of thousands of dollars later, I'm pretty angry! Now after being released from this last hospital stay, a knot/bump came up on the inside / underside top part of my arm. It felt sore to the touch, red, and you could actually see the lump. It also felt like someone was tightening and pulling a guitar string in my arm. Feeling like it was being pulled tighter. I am now on blood thinning meds, hoping it breaks down the blood clot and I don't die from the clot going to my lungs, heart or brain! Yes I'm thankful to be alive and that the doctor was at the hospital originally and implanted my pacemaker, I had 3rd degree heart block and almost died on the way to the hospital....my heartbeat was only at 20 beats per minute! Its supposed to be around 70 to 90. As a cardiologist though... How do you forget to turn on the activity rate response mode function to...ON, It adjusts your pacemaker to whatever activity your doing, and then to not think to turn it up to 150 beats per minute, after being begged over and over to look at everything, saying it's probably something quirky because my breathing capacity changed when I came out of surgery, and tried to go home the next day! All of this thing could have been prevented! Believe it or not he is a "super doctor" and Chief of Cardiology at St David's. He kept apologizing telling my husband and I that he is sorry and that this has never happened to a patient before!. I really wonder if it has or not, most people that get pacemakers are elderly and cannot fend for themselves . I'm very skeptical, his attitude has now changed and he is acting irritated because of my questions! My husband said its time to get a second opinion.

8 Comments

PM Settings

by SMITTY - 2013-07-02 04:07:26

Hello Katbell

As Tracey said, checking the settings should have been the first thing they did. But unless they have a hint of what they are looking for it is a waste of your time and Medicare money.

I say this because I went through something similar enough to what you did to be its twin. Took me several months and I don't know how many trips to the Scott & White Device Clinic to get mine undone. Each time they would do checkup then tell me the problem is not your pacemaker because it is working fine. You know something, they were correct, the PM was dead on the settings programmed into it. The problem was those settings were not what my body needed. Things finally got so bad I could not walk a block without help. I would be out of breath and totally exhausted.
I decided I needed a faster low setting and the rate response activated. When all else failed I sent an e-mail to Medtronic and requested a checkup by one of their technicians. All the checks I had been getting were by S & W nurse/technicians and I knew telling them the changes I wanted was more waste of time. Medtronic was very responsive and set me up an appointment with one of their techs at S & W for the following week. When I asked for an increase in the low set point from 60 to 80 and RR set at max 130 the S & W tech. started to balk, but he could see it was comply with my requests or get ready to do battle. So he and the Medtronic reps got their heads together and I got the settings I wanted. Now what else they changed I have no idea. In fact I realize they could have made other changes that pretty well negated what I had requested but the numbers I wanted were there.

To end this prattle, the clinic is about 2 blks from the parking lot and it took the help of my wife for me to get from car to clinic. On the way out those simple changes made such difference in the way I felt that My wife told me to slow down as I was walking too fast 2 or 3 times. About a year later that PM (9 yrs old) had to be replaced because of a low battery, and I insisted on the same settings for the new one.

If there is a moral to the story, I suggest that everyone remember some of the drs./nurses may be good medicine people but that doesn't mean they know sheep dip from wild honey about pacemakers which are electronic devices in every sense of the word. So you may have to do lots of research and read what other people say has helped them and make demands that you may be told are crazy. I did and got away with it.

Good luck,

Smitty

Thanks for commenting

by katbell - 2013-07-02 06:07:46

Checking the settings on the pacemaker is cardiac pacemaker 101-for god sakes! That's what makes me think that this has happened to other people too. Hell I learned more about calling Medtronic than I did from the doctor. The pacing techs who work for him, tried to blame me for doing something the whole 4.5 months that caused me to not be able to breathe,, ya know trying to cover the doctor's arse! I said what are you alluding too? He said the mind is a powerful thing and depression and anxiety from getting a pacemaker could have caused all of the breathing problems. Definitely the wrong thing to say to me, and definitely the last straw for me too! I said to him, if you knew your job and did this the right way, this wouldn't have taken you both 4.5 months to figure this out! I said hell, this pacemaker is so high tech it could practically implant itself for god sakes! I said maybe you should try as hard to conserve the patient like you tried to conserve the battery!

get another dr

by Tracey_E - 2013-07-02 12:07:31

Settings should have been the first thing they checked, well before anything invasive. It is very common to need the upper limit changed. This is not something rare or even unusual, imo there is no excuse whatsoever for missing that. Nothing could get me to go back to that dr! Not a second opinion, you need a new dr period.

If you only have av block, rate response off is actually the setting that works best for most of us. Not excusing him because a quick walk on a treadmill would have shown them exactly what was (or wasn't) happening when you felt sob, but rr is for sinus dysfunction, av block usually implies the sinus node works and the problem is getting the signal to the ventricles.

Good luck finding a new dr and the clot dissolving.

You Poor Thing!

by Many Blessings - 2013-07-03 01:07:22

I'm with the others! Why they didn't try changing your settings the first time you told them your symptoms is beyond comprehension! That's just a given!

I'd not only change doctors, but PM techs as well (if that's possible). He/She should have suggested changing the settings if your doctor didn't come up with the idea first. Like the others said above, there is absolutely no excuse for what happened to you.

I feel so bad for you. Like so many others out here, I've had bad settings in the past, and you feel absolutely horrible until they get it right.

I'm so glad you're feeling better! I'd still look into changing doctors and techs since other issues may come up in the future. I'm still in shock they didn't change the settings before even thinking about doing anything else! Grrrrrrrr! That makes me SO mad!

PS: I'm a cusser, and had a VERY hard time holding my tongue on this one! I just feel so bad for you. :(

I'm Still Annoyed!

by Many Blessings - 2013-07-03 10:07:49

Hi Katbell,

I've been thinking about your situation all day. I still can't believe what you unnecessarily had to go through (and Smitty too!) Like I said in my PS: above... I'm a cusser, and I was thinking every word in the book (and then some) as I was reading your post! In fact, I was saying it out loud, not just thinking it! I still just can't believe what you had to go through!

I really hope you're not going to that same doctor/PM tech. Did you change to another doctor by chance?

Thank God they got things figured out and changed before they tried to do something else to you.

Still thinking of you!



Good Job For Leaving!

by Many Blessings - 2013-07-04 10:07:25

I'm so glad you're calling another doctor. It worries me that you might have the same PM tech though. Do you have others to choose from? In my area, there is only one for my company's PM/CRT-P/ICD (but mine is AWESOME!) If I wanted to, I could go to another city and use another, but again in my case, I love who I have. That might be an idea for you though if it's possible. Maybe others out here can give you other ideas as well.

I'm with you. I worry about the others out there that are going through this, and haven't found the right answer. It's horrible to think that people like you and Smitty had to go through this for so many months, yet it was such an easy fix. You know there are others suffering as well, as so many of us out here, if not all of us, have suffered with a bad setting at one time (luckily for only a short period in most cases.)

Thank God for this site, so people can ask questions and find out about things like settings, and so many other things.

You take care, and please let us know what you decide to do.

Tammy

by katbell - 2013-07-04 12:07:28

Yes, I very annoyed, Friday I'm gonna call another doctor, he put me on Xarelto, told me to take it, I tried to ask him some questions about combining meds with my old meds, cause I have lupus too, he was irritated with me for asking to many questions. I called my pharmacist today and learned more from her than I did off the internet or from him too for that matter. I'm so furious, with him, that just walking away and letting him get by with all of this that he's done with me, and probably what he's done with other's lives too. He's the Chief of Cardiology for god sakes! He deserves at the least a formal complaint, if not sued! He's has two many irons in the fire, letting pacing techs, just follow the norm... he's lost sight of what he was suppose to do, saving lives! He makes you feel bad if you have more than two questions to ask, or if he needs to say anything longer than 3 minutes, look out!!

shortness of breath cont.long

by katbell - 2013-08-15 04:08:58

I changed doctors and he sent me for a stress test because my shortness of breath came back. My heart rate was 120 resting and with abnormal firing on the top, and low heart rate and skip beats on the bottom too, the heart doctor said it was too high. They sent me to a arrhythmia specialist, and at 1st he mention heart ablation, but kept saying it will be hard to get it if the heart isn't firing wrong or fast at that time, I asked can't you trigger it with medicine or something? He says hmmm maybe. He put me on flecainide heart meds to suppress the fast heart rate and it seems to be working. He said, they did another EKG and pacemaker tape on this second visit, from a week and a half ago,


I felt fantastic for 5 days and then I started to get a severe ache in my right shoulder and arm with any exertion whatsoever, yesterday when I went back to the doctor he said your EKG shows your pacemaker is set perfectly! I said it can't be, because I have that same god awful ache back in my right arm that I had 5 months ago in both arms and across my top chest and top back area with any exertion, like walking, and after the tech changed the settings, it completely went away! He said, NO that can't be it, I've never heard of that EVER from a patient! I said believe me I had it! Ask Susie she's one of the pacing techs, she's the one that changed it. Now it's back in my top right arm again. He said, you'll have to live with it! Your pacemaker is set perfectly, and I wouldn't know what to change even if I could! He said your probably looking for aches and pains! I said look here, I just sat out in your office for over a hour, and no offense but I'm the youngest person out there 59 yrs, I was running 5 miles every day, when I collapsed with the 3rd degree heart block.
I need to walk or run again, I do not have the same sedentary life as a 75-85 yr. old does. I said to him I talk to people that have had a pacemaker put in, and they all rave and say...I've never felt better in my life! I want to feel that way too! He said, well what would you have me do?? I can change your pacemaker to the "out of the box" factory settings! That was it... take it or leave it! I was hot!
He then said you are my enigma, I've never had a patient like you, I certainly can't figure it out! Would you like for me to refer you to another doctor? I'm so over all of this! What are your thoughts on this? The bottom number is set to 60, and the top is set to 150 with rate response on. I'm exhausted and my patience is at it's limit for sure!

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