Im new at this!!

I received a PM 2 weeks ago. due to 2nd degree av block and heart rate of 30-40. When EP study was done there was nothing to ablate..I was even brought awake during procedure. I have been on heart meds for 28 years( digoxin and Toprol)..since have stopped then went to cardizeim. Heart rate everywhere with shortness of breath and dizziness. Changed back to Toprol..very low dose. Seems better. Still not as much energy as I would like. Also malnutrition and 25 lb weight loss. I mostly feel it kick in at night..a little thumping. Is this normal, and when can I drive?

12 Comments

Thanks

by brian1951 - 2014-11-20 02:11:22

Hi Sheila..I live in NV so I think the driving rules are the same. Went for a 3 block walk and felt it "kick in" I dont have an ICD..Not really kick in, but a change in beats.When i sit heart rate goes to 60..then over 100 when i stand. Maybe its just a system adjustment. Maybe need more time, Im not at 2 weeks till Sat. Thanks for your input..this whole thing kind of plays with your mind...Gaye

meds & driving

by bluebowtye - 2014-11-20 02:11:24

Hi Brian,

Welcome to the PM club. I do not know anything about your meds, but if you just had your PM implanted 2 weeks ago some of your lack of energy could be due to your recovery from surgery. It took me a good month before I really started feeling better. Your body is still adjusting but if it doesn't improve soon I would check with your doc as it could be your settings need to be adjusted. I never feel mine kicking in, but sometimes I feel like my heart is really pounding even though I'm not exerting myself.

I am not sure where you live as different states / countries have different laws as to when you can drive following PM surgery, but I would think after 2 weeks you should be ok. I live in Iowa and my doc told me no driving for 2 weeks. I would check with the doc who implanted your device to be sure.

Good luck to you,
~Sheila

Heart

by brian1951 - 2014-11-20 03:11:10

I appreciate all the comments...My husband doesnt understand as he has never been sick. he is a good caregiver, lots of empathy. We are flying next week, so i will wear sling as I dont want to raise my arm going through the body scanner. Some of the TSA people here in Las Vegas are not very nice. Any advice from anyone else on this? I wont even be 3 weeks along and dont want to argue with TSA over this.

Probably needs adjustment

by SaraTB - 2014-11-20 03:11:16

Hello Sheila, and welcome to the PM Club. I took digoxin and cardizem for a year before an ablation which damaged my AV node, so I ended up with a pacemaker. I couldn't tolerate Toprol at all.
Anyway, bear in mind that right now your pacemaker has been set to factory default settings: it works, but it's not fine-tuned to you and your activity level yet. It will also probably be set at a slightly higher voltage initially, and they will reduce that once they see how your heart is using it. The voltage refers to the amount of power needed to send the signal - the lower the PM needs, the longer the battery life. So that might be why you can 'feel it' right now.
Make a note of all the things you're feeling - including the surge when you stand up, so you can give the doctor or technician the best information for adjusting the settings. Heart block patients (I have 3rd degree) generally don't need Rate Response set, as it can sometimes interfere with the signals our own brains are sending, so consider asking about that too. I found in the first two weeks, before 'tweaking' that I would have a rush when standing etc, but had very little energy. Part is the recovery, but for me, most was that the settings weren't right yet.

It can be a long process: it took about 6 months of visits every few weeks for further adjustment, for mine to be set up right. I think my guys weren't used to younger, active, patients, so it was a learning curve for all of us. Keep telling them if it doesn't feel right and don't be afraid to persevere.

Although I initially was upset over needing the PM, it turned out to be a relief to be off those medications, which made me feel pretty awful. Good luck with your new PM and let us know how you get on when you have your follow-up visit to the Dr.

Thanks

by brian1951 - 2014-11-20 03:11:29

I am a hospice nurse and still working, but taking 6-8 weeks to recupe..maybe emotionally and physically. I have had an open heart surgery due to a tumor in the heart, then a pericardoil window, a lung repair and now this..seems like each time it would get easier..this seems to be the worse as it will be with me forever. I think every cardiac patient goes through a certain amount of depression for a short period of time. This all is a little foreign to me or I am still in a little denial. I will not be driving till 2 weeks is over. I debated about joining this group but felt the need to reach out to other people who have been there done that..Thank you

mental adjustment

by bluebowtye - 2014-11-20 03:11:38

I don't know about Nevada laws but I would think by Saturday you should be able to drive, although I know some members have reported not being able to drive for 4 - 6 weeks following implant. My doc told me he went with Mayo clinic's recommendations and that it used to be 4 weeks, but they had just recently changed it to 2. You also might be able to find some info on the NV DMV website.

I would agree, the mental adjustment is the definitely the hardest! I felt fine and except for 2 syncope episodes one night, I had no other symptoms prior to that. I was in total shock when I learned I had electrical problems with my heart and needed a PM! This site has really helped me. I also found learning as much as I could about pacemakers in general and my specific condition (AV block) made it a little easier to cope. It does get better. It has been just over 9 months for me now and I don't think about it near as much as I used to.

I don't know about your change in heart beats. I don't have an ICD either. I think some of that might be due to the fact that once we get a device implanted we are a lot more sensitive to what is going on with our hearts and it also could be your settings. When you go see your doc for you first check up and interrogation I would certainly let him know what is going on.

Take care and please keep coming back and asking any questions that arise as there are lots of really knowledgeable people here and we all have been though it!

~Sheila

Thanks

by brian1951 - 2014-11-20 03:11:44

Thanks for all the feedback. I did go for an interrogation and they told me that "something" was 4.3%. I didn't see the MD only the nurse. I go back Dec 10th for another check. I was told it is set for 60/130. At night is when I feel most, even my husband felt it through my ribs..I'm fairly thin. I am active..just did a 4 block walk and felt a few beats. They did say this was a "demand pacer". I do feel better off the lanoxin and back on Toprol..been on those drugs 28 years for irregular beats. They cold turkied them as this became an emergency with the heart block. Started on cardiozem..didnt work back to 50 mg of Toprol. I hear you about being upset over a PM..I didnt want one, even though I knew going off of drugs would help.Thank you for letting me know about the "tweaking". Maybe my body has to adjust to decrease meds, and a heart rate like real person..

Ah yes! the TSA!

by SaraTB - 2014-11-20 04:11:28

The sling is probably a good idea, to reinforce the fact that raising your arm for the scanner will be problematic. What I do, is announce, as I approach the metal detector position, "I have a pacemaker", usually tapping the area of my shoulder for emphasis. They tell you to wait until there's an agent the same gender to give you the pat down, then let you through into that area.
It won't actually harm your PM to go through the metal detector, but it will set it off, which makes the TSA tense and twitchy, and you get patted down anyway, to prove it's a pacemaker, so just tell them up front!
Make sure your husband knows to keep an eye on your purse and other belongings as they will still be going through the metal detector, while you're being patted down, and you don't want them stolen.
They will probably want you take off your shoes and put them through. They will explain what they're doing as they pat you down. I usually try and chat, because it makes the process friendlier and the agents have always responded nicely. "how many PM people have you checked today?" is my usual opener.
Good luck with it, and enjoy your trip.

Actually it may not

by Theknotguy - 2014-11-20 05:11:50

Actually the PM may not set off the metal detector. Went through US and the UK without setting off any metal detectors in any of the airports. The TSA agents actually looked bored with the "Yeah, yeah, you gotta pacemaker." attitude. You still want to let them know you have the PM ahead of time.

I actually had more problems with TSA and my CPAP. If you have a CPAP you definitely will want to take it out of your pack so they can see it. Otherwise it will result in a second trip through after a side trip and a discussion about dangerous equipment. But who can figure out TSA?

Travel

by brian1951 - 2014-11-20 09:11:20

Sometimes I travel alone..guess i wont do that till I am able to lift objects into the overhead. Use to TSA have a fake knee...it always sets everything off, as did a pin in my hair!! Some are nice but not too many here in Las Vegas. Thank you to all who responded..its a comfort to me...Gaye

Airport scanners

by WillieG - 2014-11-20 10:11:27

Hi Gaye! I had my PM installed on June 16 and flew the next week. I went thru the scanner with no problems and never mentioned my pacemaker to anyone. I had no problem gently raising my arm. I was not given a sling. I flew a second time in Oct with no problems. You should be fine. Have fun on your trip!

Welcome to the club!

Wilma. And yes, I had a mental adjustment as well. It takes time.....

WillieG

by brian1951 - 2014-11-21 11:11:06

Hi Willie, The mental adjustment is tough. When I feel the pace "go off"..i have to remember its the heart PM and not my own heart.!!! I am raising my arm gently..its a little sore as PM is close to armpit. This weekend will be 2 weeks so I can drive. This is tougher than I thought!!! Thanks for all the support!!! Gaye

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