Trying to come to terms with it

Hi
Had my first pacemaker fitted on 4th February. Had palpitations for a while and my GP carried out a 24hour ECG a few weeks ago. It was found that I had a secondary heart block (heart missing beats and beating much too slowly), so I was referred to a cardiologist and a dual chamber pacemaker was fitted three days later!

I am very sore and swollen above my left breast - this could be because they had to fit the pacemaker twice as after they had finished they found the 'wires were crossed' so they had to start again. Sleeping is difficult because I am very uncomfortable and I wake when I move.

Also I was told I will feel much better but I feel much worse. I was not short of breath before the op but now I am. I feel so tired by early evening that I just want to fall into bed - maybe this is because I am not sleeping very well and have had to get back to work.

Am I being too impatient? I know it is only 12 days! Why do I hate this intrusion so much even though I understand that my life would have been in danger without it?

The swelling on top of the pacemaker is very large but the bruising is going. At the moment I can't imagine the swelling going down and my left breast pulls on the area all the time - presumably men don't have that problem.

It is hard to talk to the family about how I feel and well-meaning friends keep telling me how they know someone whose life has been transformed since they had their pacemaker fitted - playing sports, cycling, trekking, going to the moon! I felt fairly well before and now I feel like an invalid with a strange piece of metal stuck in my chest!

Sorry this is so long but I know people who read this will understand and might be able to reassure me.

susanspurs

12 Comments

Re: Trying to come to terms with it

by susanspurs - 2008-02-16 01:02:57

Thanks Gloria, Andy and Jules for taking the time to reassure me.

I am very tearful at the moment but have found this website really helpful because I don't feel it is just me and my pacemaker, there seem to be lots of people out there who understand and care, Thank you.

Sue

I feel ya

by TraciaJo - 2008-02-16 02:02:22

Boy do I feel those comments, I don't work anymore and I thank God to have a husband with a good job....Just from doing housework, I am so tired by 4:00pm sometimes I do give in and go to bed.......my poor dog doesn't know if it's night or day sometimes......I used to be one of those people that was there for everyone........not true anymore........I can't and I felt guilty........this is what I tell myself and it works for me.........I say God loves you and others love you, I am here for a reason.........If I don't feel well than others will have to understand........If I don't feel well than I am going to tell people I DON'T FEEL WELL......I DO WHAT I CAN.........I PRAY FOR PEOPLE THAT I CAN'T PHYSICALLY HELP............I DON'T HAVE TO BE SUPERWOMEN ANYMORE...........PERIOD........I LOVE MYSELF........NOTHING WRONG WITH THIS.....LOVE YOURSELF AND BE KIND.......NEXT THING IS ......I TAKE ONE DAY AT A TIME AND EVEN WHEN I FEEL CRANKY.......I TRY NOT TO SPOIL SOMEONE ELSES DAY......GOD FIRST........TAKE CARE AND PRAY.........This is what works for me..........from Tracia

still adjusting

by VonnieVern - 2008-02-16 05:02:03

I understand where you're coming from. I appreciate communicating with others here who have varied responses to getting pacemaker. My mother got one at age 75. After a few weeks she rarely mentioned the pacemaker because she hardly noticed it anymore. I just turned 50, got mine last October, and my life still hasn't gotten back to normal. I just wish the doctors and medical information I got at the hospital would have indicated that some (many?) people do have more adjustments to make than the people in the videos they had for me to view.
Vonnie

RE: Trying to come to terms with it

by gsue55 - 2008-02-16 08:02:04

HI Susan,

You are not being to impatient but...I can tell you it will take longer. All of the things that are happening to you seem to be normal...as far as I am concerned. These all happened to me as well.

I was a smoker...I quit after Pm was put in...I am still very short of breath and I wasn't before the PM.( This might be not be normal...some of the others on her can comment on that one).

I have SS and I found out when I went into Cardiac arrest back in Sept. had my PM put in 3 days later.

As far as you are feeling with the Pm I think this is all normal....it has been a very short time.

Like you..I had a very hard time accepting that I had to have this chunk of metal in my body...I guess for me it just took Good caring friends & family to help me through it all.

I can say that this support group was the best thing that ever happened to mer Post Op. There is so mush knowledge here and if one hasn't gone through what you have...someone else has. There is a lot of support and help here. Please keep coming here and you can even read back into older messages ans you can find a lot of answers there as well.

If you would like, you can email me personally..I don't mind.

Good Luck & Smile

Gloria

RE: Trying to come to terms with it

by ajones - 2008-02-16 11:02:10

Susan,

This all seems normal to me as well. I had mine fitted 1/18 and felt some of the same things you described. It was hard for me to stay awake at the office for a couple of weeks as I was not sleeping well and I think my body was trying to recover from the trauma.

On the bright side, it seems that every week that goes by, my body seems to get better. It is just going to take time. You will begin to not notice the PM after a while and resume a normal life. The one thing that I keep in mind is that I am lucky to live in a time when this technology is available.

Before my PM was fitted, I would walk 2.25 miles in about 30 minutes. I am just now starting to get back to that same speed as I was short of breath also.

I hope this helps and keep the faith. Feel free to e-mail me as well.


Andy


Same

by Jules - 2008-02-16 11:02:29

Hi

Welcome. I am now 5 weeks post PM op. I felt the same and still get days when I am totally exhausted. I am quite small framed so the PM is an intrusion and I am having difficulty coming to terms with it as well. In fact I was on line yesterday and had some wonderful replies which help you feel better.

My difficulties are subsiding and I have my six week check next Friday. I am going to ask to turn the PM of my resting beat down to 55 and have no response on.

You will learn alot about your PM from people on here and I am still learning to be patient and give myself some slack as someone told me yesterday.

Take care

Julies

Hello Susan

by wietske - 2008-02-17 01:02:20

Dear Susan,
It needs some time to feel better.At this time I have my second p.m. and the recovery was sooner than the first time.By my first p.m. I could not sleep well.Was very tired and hated my p.m. Could't use my right arm very well.People must help me with the groocery and the laundry. And every one was telling how lucky I was with my p.m.My cardiologist was telling that I could do every thing,even deep shea diving.I'm not so sportive you see.
But after a time I wash swimming,fitness and sleeping very well,and forget that I have a p.m.Last november I have had a new p.m. One of the leads was broken.First they told me dat my p.m. was okay,but at night I got heart-problems.Maybe I had stress they told me.When I felt of the stairs after a black out they find out that I had a broken lead.I got a new Medtronic-p.m. and a new dread and I recovered very good. Better than the first time.I hope you will feel better soon.People without a p.m. always know better.

kind regards,
Wietske

Takes Time

by Tessy - 2008-02-17 04:02:08

I had my PM fitted on 29 Jan one week before you. I had bad brusing and pain. I took 1000 mg paracetamol and that was helped a great deal. Now I am going into my third week and the bruising has gone and so has the pain. I still have a little annoying stitch, which will have to come out when I visit the clinic next week. I would suggest you wear a bra, pad it under the strap so it doesn't touch the scar. The weight of the breast (if you are anything like me) pulls at the scar. Also have a couple of pillows at night to lift you. Also it was suggested on this site to apply ice - (wrapped of course in a cloth) that should bring the swelling down. You will get little niggly things for a while, but it does get better. Get plenty of rest.

I notice you are in London, I live just outside London. If you want to write to me to 'compare notes' to can write to my inbox.

Take care
Teresa

Crossed wires

by ElectricFrank - 2008-02-17 08:02:47

That's one that makes you feel confident! Hope they got it right the second time. I would hate to have my heart pumping backwards!!!!!!
Seriously, as other have mentioned you have had a lot of surgical stress on your body and it is using energy to heal.
Be sure you get an EP or better yet pacemaker rep to do a checkup on you. With all the errors your doc has made, I wouldn't trust him/her to to the adjustments. This could also affect how you feel.

hang in there,
frank

Hello Susan

by pacergirl - 2008-02-17 09:02:46


Welcome.......

You have been given some very good advise here and I know it comes from the kindness in their hearts. There are some wonderful people here and they have helped me so very much over the last 3 years.... they will for you as well.

What you are going through is normal. You body has suffered a lot and is trying to heal. It will take time. Each person is different. As you have already read, healing happens at different rates for each person. For me it was the mental adjustment that caused the most stress, which caused some of the other problems, sleeping and moving about in the day. So Susan, be kind to your body, be accepting of where you are emotionally. You are going through so many changes.... all of which are not bad ones. Look... you are still here..... and I am thankful for that! Hang in there it does get better. It has for us. It will for you.

You are not alone. You have friends across the world!
Blessings.... Pacergirl

it took me longer than I expected too

by mandogrl - 2008-02-17 11:02:38

hang in there. until about week 6 I was thinking it REALLY sucked. By week 12 I was thinking it was not so bad. Now at 6 mo, harly notice it. SOunds like you've been thru a lot, so give it a bit longer + keep your hopes up.

It all gets so much easier!

by allanrogers - 2008-02-19 03:02:38

I had mine fitted october 07 and i have gone sometimes 12 13 hours without remembering I even have one.
The pain certainly goes but there is always a twang to rember your little friend is there.That is the only way to get your head around this because if i am honest the hardest part of accepting this whole thing was the fact that i didnt feel organic anymore .But i do have more strength and I sleep better so all I can say is hang on in there it really does get easier.

love

allan

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