Wow,,disappointed and confused

I went thurs for my app. With device clinic and what I thought would be a good chance to make a hopefully final tweak to my settings and I would be on my way to lots of uneventful training miles. I was surprised to hear I'm sorry your appoint was cancelled, I will check with them and see, and she comes back to say they don't know why no one called you but they put you on a yearly follow up your next appointment is Oct,,2014 ???????
I was so disappointed apparently I didn't think straight as I took my new appointment card and left the office for my very humble
1 1/2 hr drive home. On the way I got more and more pissed and wished I would have insisted on at least a interagation report to see where I was pacing ;(-
The last they knew, they told me there was nothing they thought they could do and I insisted they try something at least change my delay from 60 back to 30 and raise my max HR,,, they made some changes which helped some. I have been running with my suggestions and they think I ok to go for a year,,, I'm missing something here I know,,,, why does it have to be this way,, all we are asking is for suggestions and options and some information exchange to improve our exercise life style, sorry I'm venting. I guess I'll call back Monday and see if I can get some
satisfaction ;(-

15 Comments

Sorry!!

by Moner - 2013-11-09 11:11:31

Hi Stillrunning,

What a bummer, they didn't give you a courtesy call to inform you this appointment was canceled.

Please call them on Monday and insist you come back for a interagation report and DON'T forget to ask for a copy of the detailed report. I suppose they'll have to mail you the results, since your an 1 1/2 away.

Let us know what happens.

Moner
>^..^<

The great Electric Frank.............

by Tattoo Man - 2013-11-10 02:11:52


................once levelled with me with something of a Truth. It went along the lines of.." You needed fixing..so you got fixed..being fixed is not the same as being brand new".....Frank, as ever, not pulling his kid-glove punches !

Certainly something along those lines.

Stillrunning...all of us who do sport know exactly how you feel, and I reckon that lots who don't do sport know how you feel too.

There must be more than a few on this Forum who would give their back teeth to do anything remotely like sport..they seem to keep mercifully quiet on the matter.

My very best wishes and keep on running !

Tattoo Man

Running

by golden_snitch - 2013-11-10 05:11:55

Hi!

Well, the question is: How has your running been going? If you are doing fine, then there really is no need to tweak settings again and look at pacing percentages. The rate response is not as fine tuned as a fully functioning sinus node. So, while settings can of course be optimized, there comes a point when you've exhausted all options. You always need to compromise a little, the rate response will never be as good as a working sinus node. So, don't expect too much.

Also, the Medtronic Adapta can do a lot of optimization automatically; in fact, if I understood this correctly, it does that every single day. My cardio says the Adapta does its job really, really well when it comes to automatic optimization. Why not give it some time to figure you out? It's important to give the pacemaker some time, and also your body to adjust to the device. If you tweak it too much within the first couple of weeks or months, you'll never get used.

I know that I once said you should keep asking for tweaking until you feel fine. However, now that I read through all your postings again, I have the feeling that you have already had a lot of tweakings, including a treadmill test with tweaking afterwards. So, it could be that your doctor has now come to this point where he does not know what to do, and where he probably does not see any reason to keep tweaking the settings. Yes, of course, you have your ideas and you want to see your numbers. But it just doesn't work that way that we tell the cardios or pm techs what we want, and they keep doing that - what if we're never satisfied?

I think the question you should ask yourself is: Do you really cannot exercise with the settings as they are now? Or can you do quite a lot, just not the really strenous exercise? Compromise is important, I said this before.

Best

Inga

Still running...great !

by IAN MC - 2013-11-10 06:11:55

Inga, as always speaks so much sense. Often I think our expectations are too high especially distance runners.

For my first year after implant I had a " Is this as good as it gets ? " complex. I pestered and pestered the PM technicians for just one more tweak, just one more little adjustment. Why not raise that setting ? How about lowering that one ? Could I do another treadmill test ?

They were very patient but now I am on yearly appointments.! I have now come to accept that, after an ablation and a PM implant, life is good and is MUCH better than the alternative BUT it is certainly not the same as when I was in my prime running marathons..maybe this is as good as it gets !

Best of luck
Ian


The fact of the matter

by rfassett - 2013-11-10 09:11:00

Is that we are NOT the same after the implant. Yes, we would like to be as close to optimum as feasible but the others that posted make very good sense.

But on the other hand, there is no excuse for the type of mis-communication you experienced. Call your EP and complain. Being treated like a lower life form by people that we are paying to treat us is not acceptable.

Pessimism or Reality ?

by IAN MC - 2013-11-11 01:11:56

Hi Jerry. I have always enjoyed your upbeat posts and have never found pessimism to be an endearing quality

I would love to win Wimbledon, to have a single-figure golf handicap and to do a sub 3 hour marathon but the reality is different. The important thing though is that I enjoy all three activities and have set myself different goals and objectives since having an ablation and a PM

It is just possible that there is no setting on earth which would restore many PM patients to a level to meet their expectations and that is reality !

I agree with your sentiments completely though

Cheers

Ian




So, Guys.....................

by Tattoo Man - 2013-11-11 04:11:33


....................have we,..got some kind of handle on this, ever, ever, pressing matter..?

Probably not...

But

Let PM Club never give up on trying to understand this issue.

Me..Doh..unqualified..with just a hunch of an idea to explain away the fact that, at 63, I look for excuses for not training hard enough.....lack of 'Killer Drive'.

Just maybe I am using the Pacemaker Years to explain away those years when, during my, Mad Bike Years, I trained my nuts off to achieve 22.27 for 10 miles against the clock and 58..51 for 25 miles.

Just maybe I should be content to be a 'leisure runner'..taking on local 10k runs..mixing with the young'uns..and just reminding myself that I am competing , not just with 'my children'..but also '..

My Grandchildren

Run For Life.............

Run For You................

TM-UK

Pessimism vs Reality

by donr - 2013-11-11 04:11:53

Ian & Inga smacked the nail right on the head, & squarely, at that, no glancing blow by either.

When it comes to running there's Roger Banister, Ron Delany, Sebastian Coe - & a whole bunch of others who's names I cannot remember. Champions, every one.

But I want to throw out a name most will not recognize - Louis Zamperini. At one point in his career, it was speculated that he would claim the first sub four minute mile - only one little thing got in his way - WW-II & 46 days on a life raft floating in the Pacific Ocean, followed by over two years of brutal captivity in Japan.

Zamperini got home in time to prepare for the 1948 Olympics in London & started working toward his dream - the Olympic Gold & the elusive 4 min mile. Unfortunately, harsh reality interfered & he just flat out could NOT reclaim his former physical condition, no matter how hard he worked at it. It darned near killed him - physically & psychologically. He faced a new normalcy.

He's now 96 yrs old & talks about it all on the lecture circuit.

Anyone who wants can read about it in one of two books "The Devil at my Heels" (written by himself) & "Unbroken" (Written by Laura Hillenbrand).

I strongly recommend both for any PM/ICD host.

Don

Patient ultimately responsible

by Theknotguy - 2013-11-11 11:11:49

Just got my PM on 8-Oct-2013 so am very new to this. Will use a quote a doctor said. "Ultimately the patient is responsible for their own health." It's OK if you smoke like a chimney but you'll pay the consequences.

Unfortunately you either have to have an advocate or be your own advocate. Have a little chutzpah and get in the face of the techs. Most of them have never experienced a problem day in their life and become insensitive to what we've gone through. Step on their toes until they apologize. Sorry if I come across too strongly but I died two times and was almost killed a third. Don't have time for insensitive people goofing off.
So I'd make the 1 1/2 drive back to the place and get in directors face. Let him/her know you don't appreciate being pushed around and what are they going to do about it? They don't have to like you as a person but they should respect you.

Make a up a binder/log book with info. Put tabs in and keep track of what's going on. If you understand what's going on it's harder for the techs to push you around.

In the meantime, hang in there. I'm personally shooting for 100+. May be a cranky SOB but it's a lot better than being dead. Trust me on that, I know!

Best wishes. Have the PM keep on tickin!

Theknotguy

Attitude

by gleesue - 2013-11-11 12:11:14

I think Inga and Ian are a little bit pessimistic here. You should have high expectations and not compromise. When I have need adjustments I just call the PM lab. I didn’t like the way my PM was running a little less than 2 weeks ago, just called the lab and they said they had no appointments, I said I needed to come in and finally they said if I wanted to come up they would fit me in. I have a 1 hr. and 15 minute drive. They tweaked a few things and it seems to work a little better now.

My advice is to not take no for an answer. Tell them you are having problem and you must come in for a check.

As far as running or any other activity goes, you can’t let your mind get to you. I work out a minimum of 5 days a week and 260 days a year. I’m usually over that. I don’t run much anymore (really miss it) because of foot arthritis, but have replaced that with biking. Since I’ve had my PM I have obtained several new personal bests. I got my PM in August 2012. At first I was a little slow but I just kept working out and went back to the PM lab until I felt things were right.

I just got back from Naples Florida for 4 days of golf, 18 holes a day, worked out this morning, will bike tomorrow and play tennis Wednesday.

Sometimes I here too much pessimism here. I know it’s hard, but we have what we have and we need to be positive. That little machine in your chest gives you hope and if we work hard we can all get the results we want and deserve.

Jerry

How 's about it Jerry ?

by IAN MC - 2013-11-12 04:11:46

... a game of tennis ?? Unfortunately me getting to Ohio is about the same distance as you coming to Wimbledon.

I do like beating the younger guys. I am 74 but , like you, I never let age get in the way. I will make allowances for your foot arthritis !

Cheers

Ian

A little more stuff

by gleesue - 2013-11-12 04:11:53

You know, I guess I’m really lucky. I had open heart surgery in 1991, just the 9th person to have the Maze procedure at the Cleveland Clinic, when it was first being developed. Spent 10 days in the hospital. When they did the procedure they removed the atrial appendage. That’s where 90% of the clots will develop in the heart. I think that has helped me stay off medication. I’ve also had 4 ablations, including a pulmonary ablation when those were first developed. One ablation took 9 ½ hours. I’ve also been cardioverted at least 35 times, probably more. Just before I got the PM I was cardioverted and after that my heart started going 6-10 seconds between heart beats. When you look up at the monitor and see almost a flat line it becomes a concern. Bingo the PM. My heart will still speed up under stress like exercise, but with all the work I’ve had done it won’t go much over 145, set 50-140. My PM is only working about 40% of the time so perhaps I don’t run into some of the problems others may have. My Doc always tells me, the main reason I’ve done so well is because of all the exercising I do. I can go back to 1982 and tell you every day I have exercised, what I done and for how long.

I know this information doesn’t help Stillrunning, but we all have a story. Like Ian I don’t intend to play Wimbledon. It would be a long trip from the US. But I do like beating up on the younger guy’s, and improving my personal bests on my bike circuits or lifting more weight since getting my PM. I know I’ve said it before but my Doc has marathoners on the Biotronik Evia.

When it comes to my health, I will always be upbeat and never let a few little things like a pacemaker, arthritis, or age, I’m 67, get in my way.

Love you guy’s.

Jerry

Experience

by golden_snitch - 2013-11-12 05:11:55

Hi!

I'm not being pessimistic, I'm just telling you what 15 years of being an arrhythmia patient - 14 years of being a pacemaker patient - have taught me. Of course, I started out with great expectations, and had lots of tweaking - my goal was to get my active life back (I was 18 at the time of implant). But due to several sinus node modifications, I have always needed the rate response feature a lot. I have had dual sensor rate response with accelerometer and minute ventilation, and accelerometer only. Even with the dual sensor rate response you have to compromise. It has its limitations. For instance, those of us with an accelerometer only for rate response will find it very hard to ride our bikes; an accelerometer needs upper body movement to sense activity, and since there isn't that much when you ride your bike, your heart rate remains quite low. When I had the dual sensor RR, the minute ventilation sensor reacted to movement of my left arm and shoulder. Just moving my left hand to my sternum back and forth would cause my heart rate to speed up to the max. upper rate.

Don't know if you need your rate response, Jerry. If you don't, then it's impossible for you to say what to expect from a rate response. I did read that you have a Biotronik Evia, which comes with Closed-Loop Stimulation as a rate response sensor. It works completely different than all other sensors. So, if you have it activated and are doing so well when exercising, it sounds like it's, in your case, superior to other sensors. But accelerometer and minute ventilation definitely have their limits.

Best

Inga

Thanks

by Stillrunning - 2013-11-15 01:11:30

Wow, I'm just totally impressed by all of your comments, I don't care if I get additional tweaks of my settings or not but I'm so thankful to run across such a group of caring fellow athletes, I'm humbled, I appreciate all comments and will read them over and over again and be inspired, thanks god speed to us all, thanks for the support ;)-

Settings-Stillrunning

by Stillrunning - 2013-11-24 01:11:29

Ok gang you gotta hear this one it will crack you up !!!
I worry and worry about upsetting my heart people, the heart des, the device clinic techs, the office staff. So I fret over this for a week and get on the patient support web site and try to email them with my frustration and concern that my app was unexpectedly cancelled and felt I needed further adjustments, sent two messages eventually someone called one morning telling me they did not work at the office but monitored the emails and based on that they would call and reach out to the office staff and someone would call me back,,,,,3 days no one called, I sent a message again to the dr this time and got a immediate response your message has been submitted for immediate follow up !!! Yep ,,, no call two days ,,I call and talk to the office manager patient advocate, she listens to my complaints, says yes they just received my one email, the last one and someone was about to get back to me. It's Friday so the device tech is out on Friday and she will probably call me on Monday, even tho she is out all next week for US, Thanksgiving !!! No problem right,, at least I'm getting some attention,,,,,but I didn't tell you the best part,, later that afternoon I go to the mailbox AND,,,, there's a short note from my heart drs. Office noting that I had missed my follow up app. For nov 7th and how important those follow up apps. Were and please call the office to reschedule ;)-
I'm just saying you can't make this shit up,,,,,
The good news I spite of this I went out sat and ran a 5K in 25 mins flat at 25 degrees F
Once again thanks for letting me share with you,, like I said I reread your comments for positive reinforcement usually before I call the office,, endorphins to all and to all a good night ;)-

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