His-pacemaker technique

Posted by corjianne @corjianne, Fri, May 17 6:56pm

Hi everyone, My cardiologist/electrophysiologist has just recommended a new technique, the His-pacemaker technique to insert a pacemaker. (He was unable to insert a pacemaker in the normal way.) This is my last hope to have a better quality of life, but I’m hesitant to do it because it’s so new. Does anyone have experience with this? Thanks.

@yoanne

corjianne @corjianne ,
I would like to comment the discussion ( I'am a bit late, but all the posts of mayo clinic connect did not come in the mail entry, but in the bulk mail , I do not know why). I do not know ,if you have even heard of digitoxin.it is a very old substance. nowadays it had a come back, there is a two year trial in a university clinic /Germany. the aim is to investigate, if digitoxin can reduce the numbers of patients with congestive heart failure , when they need a treatment in the emergency department..
let me explain my history: Since jan.2018 i have a two chambers pacemaker because of a block in the electric transport between the right chambers..I had no problems, but since last december I noticed gain weight, I lost my energy, I had problems with breathing. To cut a long story short, I felt miserable. the cardiologist confirmed the bad situation, serious congestive heart failure, most probably, induced by A-fibrillations/pacemaker electrode. the right ventrikel 's reaction was an serious arrhythmia. in spite of a betablocker (and bloodthinner). the cardiologist decided to give me digitoxin in addition to the other substances.
After 10 days I had a full recovery !! , also confirmed by the echocardiography., no heart failure anymore. I got the bicycle out of the garage, I was very relieved. I still take a low dosis. I would be very interested to hear, the opinion of american cardiologists. I'm a dutch woman living in germany.

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Hello @yoanne and thank you for joining this discussion.

I am glad to hear that you have noticed an improvement in your symptoms. It sounds as if you have been taking digitoxin for about a year now, is that correct?

Perhaps @kanaazpereira will be able to shed some light on the use of this med in the U.S.

@yoanne, have you noticed any side-effects since you began this treatment?

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@hopeful33250

Hello @yoanne and thank you for joining this discussion.

I am glad to hear that you have noticed an improvement in your symptoms. It sounds as if you have been taking digitoxin for about a year now, is that correct?

Perhaps @kanaazpereira will be able to shed some light on the use of this med in the U.S.

@yoanne, have you noticed any side-effects since you began this treatment?

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@hopeful33250 ,
hello teresa,
I got the pacemaker january 2018. when I left the hospital they told me,that I had many atrium fdibrillations. but this is not uncommon, I should not worry about it. my medications were bisoprolol 7.5 mg/d + a blood thinner Eliquis .November 2018 I had a pacemaker check. the cardiologist told me, that I had 94% Fibrillations in the atrium, that means that the pacemaker electrode in the atrium was useless.
I depended more or less on the electrode for the right chamber. a couple of weeks later I noticed loss of energy, in the beginning I had to leave my bicycle in the garage, 2 weeks later I didn't even manage the walk to the bus. my weight went high, but I did not see any odemas in the legs. but apparently I got oedema in the lung, so difficulties with breathing (dyspnoe). I discussed the situation with my family doctor. she gave me a diureticum and she took care of an appointment with the cardiologist. (in Germany the patient has to wait a long time) . Februar 2019 I saw the cardiologist, the echocardiography confirmed my bad condition.: all (!!) the heartvalves were insufficient, even my mitralvalve ( I had a minimal invasive mitralvalve reconstruction 3 years ago) was highly insufficient, which was a great shock for me. . of course I did recherche in pubmed. and I knew, that in such a case they deactivate the electrode in the atrium. but that didn't work, because, like he said, the problem is located in the tissue of the right chamber. so he suggested digitoxin – 0.07 ng/ml.

to answer your question, I started the digitoxin only in februar this year. 10 days later I was fully recovered. 6 weeks later they measured the blood concentration of digitoxin (very important!!).. this was too high, so I started the lower dose (0.05 ng/ml).

you asked about side effects, I have none, but it is very important to choose the right dosage, depending on the weight of the patient.
Yoanne

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@yoanne

@hopeful33250 ,
hello teresa,
I got the pacemaker january 2018. when I left the hospital they told me,that I had many atrium fdibrillations. but this is not uncommon, I should not worry about it. my medications were bisoprolol 7.5 mg/d + a blood thinner Eliquis .November 2018 I had a pacemaker check. the cardiologist told me, that I had 94% Fibrillations in the atrium, that means that the pacemaker electrode in the atrium was useless.
I depended more or less on the electrode for the right chamber. a couple of weeks later I noticed loss of energy, in the beginning I had to leave my bicycle in the garage, 2 weeks later I didn't even manage the walk to the bus. my weight went high, but I did not see any odemas in the legs. but apparently I got oedema in the lung, so difficulties with breathing (dyspnoe). I discussed the situation with my family doctor. she gave me a diureticum and she took care of an appointment with the cardiologist. (in Germany the patient has to wait a long time) . Februar 2019 I saw the cardiologist, the echocardiography confirmed my bad condition.: all (!!) the heartvalves were insufficient, even my mitralvalve ( I had a minimal invasive mitralvalve reconstruction 3 years ago) was highly insufficient, which was a great shock for me. . of course I did recherche in pubmed. and I knew, that in such a case they deactivate the electrode in the atrium. but that didn't work, because, like he said, the problem is located in the tissue of the right chamber. so he suggested digitoxin – 0.07 ng/ml.

to answer your question, I started the digitoxin only in februar this year. 10 days later I was fully recovered. 6 weeks later they measured the blood concentration of digitoxin (very important!!).. this was too high, so I started the lower dose (0.05 ng/ml).

you asked about side effects, I have none, but it is very important to choose the right dosage, depending on the weight of the patient.
Yoanne

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Hello @yoanne,

I always think that Mayo Connect is a way to learn from others' experiences and I really appreciate the detailed information you provided on your symptoms, diagnosis, and treatment. This was certainly a learning experience for me and I'm sure it will be for others as well!

I admire how proactive you have been in finding an answer to your problem. Your research most certainly made a difference!

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@corjianne

Kanaaz,
Thank you very much for this information. I'll read it now. I haven't decided on a time frame because I haven't decided if I'm going to have the procedure. I believe the information you sent me will help me to make my decision. Mayo Clinic is a possibility.

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Hi @corjianne,

I’m so glad – I hope the information will prove helpful. If you decide to choose Mayo Clinic, I am confident that you will be in the best of hands. The contact information for Mayo Clinic (Minnesota, Florida and Arizona) can be found here:
http://mayocl.in/1mtmR63
I wish you all success – let me know if you have any questions or require any additional information.

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@kanaazpereira

Hi @corjianne,

I’m so glad – I hope the information will prove helpful. If you decide to choose Mayo Clinic, I am confident that you will be in the best of hands. The contact information for Mayo Clinic (Minnesota, Florida and Arizona) can be found here:
http://mayocl.in/1mtmR63
I wish you all success – let me know if you have any questions or require any additional information.

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Thanks, Kanaaz. I'm still researching. The idea of having this done scares me, but I'm not doing well this way, so. . . .

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@kanaazpereira

Hi @corjianne,

I’m so glad – I hope the information will prove helpful. If you decide to choose Mayo Clinic, I am confident that you will be in the best of hands. The contact information for Mayo Clinic (Minnesota, Florida and Arizona) can be found here:
http://mayocl.in/1mtmR63
I wish you all success – let me know if you have any questions or require any additional information.

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Hi Kanaaz @kanaazpereira I hope you don't mind me jumping in here with a different pacemaker question. How does one go about researching a particular one that has been recommended for me? It is the Medtronic Advisa dual chamber model A2DR01. I was told that initially it would be set to a mode that would detect arrhythmias and increase the rate to get me back to sinus. Does that sound familiar to you? I am curious how successfully it does that because the second option then is the AV node ablation which does not sit well with me at all. I currently have a very complex atypical left atrial flutter and have had 2 ablations since Sep 2017. I am actually quite pleased they worked so well and that I have only had 2 cardioversions – last one several days ago. Not sure if this will continue and how soon I will have to decide on next steps. I am thinking of getting a second opinion at Mayo and was hoping you would have a recommendation. I looked at all the bios but could not decide. Thanks. — Mary

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@sayaboleh

Hi Kanaaz @kanaazpereira I hope you don't mind me jumping in here with a different pacemaker question. How does one go about researching a particular one that has been recommended for me? It is the Medtronic Advisa dual chamber model A2DR01. I was told that initially it would be set to a mode that would detect arrhythmias and increase the rate to get me back to sinus. Does that sound familiar to you? I am curious how successfully it does that because the second option then is the AV node ablation which does not sit well with me at all. I currently have a very complex atypical left atrial flutter and have had 2 ablations since Sep 2017. I am actually quite pleased they worked so well and that I have only had 2 cardioversions – last one several days ago. Not sure if this will continue and how soon I will have to decide on next steps. I am thinking of getting a second opinion at Mayo and was hoping you would have a recommendation. I looked at all the bios but could not decide. Thanks. — Mary

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@sayaboleh ,
As to the second option: AV node ablation you also need a pacemaker.

Yoanne

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Thanks for sharing your insights, @yoanne,

Hi @sayaboleh,
I am not a medical professional and cannot offer medical advice, or recommendations, but I want to applaud your attitude of researching details and getting a second opinion. When you're facing tough healthcare issue, it’s hard, not only to know what to do, but to be confident and comfortable with your decisions!

If you’d like a second opinion from Mayo Clinic, please call one of our appointment offices – you can also request an appointment online – and representatives will ask a few questions to help direct you to the best specialist.
The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63

Here’s some information about dual chamber pacemakers https://www.mayoclinic.org/tests-procedures/pacemaker/about/pac-20384689
I’d also encourage you to read the messages in this discussion, where @patpj @cupcake @lmclaugh @bergem @canammick and others have shared some information and experiences that I think you’ll find useful.
– Pacemaker recipients: https://connect.mayoclinic.org/discussion/pacemaker-recipients/

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