pacemaker/defibrilator for congestive heart failure

interesting patient

New Member

Joined : May 2006

Posts : 5

Posted 5/24/2006 8:33 PM (GMT -7)

Just wondering if anyone can share personal experience with having a pacemaker/defibrilator with congestive heart failure. They are planning to do this 6/19 for me. My body has not tolerated meds very well. I also have marginal zone lymphoma and hyper- viscosity syndrome. Anyone heard of this???

els

Veteran Member

Joined : Oct 2005

Posts : 4031

Posted 5/25/2006 7:20 AM (GMT -7)

Hi interesting, I wanted to welcome you healing well forum. It sounds as if you are going though so much, I am so sorry for that. I know it is hard. I haven't heard of the disorders you listed although I did google them one I am going to post a link for you. I haven't seen anyone post of these before here but you never know...I do have a pacemaker implant though. I just got it in September 2005. I am 32 yrs old and have bradycardia (slow heart rate). I have had some problems with pulling the leads out of the heart as I have another disorder that causes me to pass out often and I fall. So I have had to have a few surgey's to have them revised. But overall the pacemaker has worked well. I am just now getting to the point where I can walk and exercise and feel pretty well. Please do keep us updated on how your doing. take care http://en.wikipedia.org/wiki/Hyperviscosity_syndrome Elisha https://www.healingwell.com/donate

interesting patient

New Member

Joined : May 2006

Posts : 5

Posted 5/25/2006 7:28 PM (GMT -7)

Thanks els nice to meet you. I just went to the doc today and they want to start Rituxan tomorrow!!!! I am sooooo not prepared. I still have trouble saying "cancer" I had no idea that I could do this before the pacemaker. I hope my leads dont come out. Why do you fall? I get upset with myself because I am a nurse and I am as afraed of this stuff as anyone else. I think I know too much but not enough. I will let you know. Thanks.

DREAMGIRL

Veteran Member

Joined : Jan 2006

Posts : 600

Posted 5/25/2006 7:53 PM (GMT -7)

i just wanted to say hi and wish you well, sometimes a little information can be scary. is this all new, how old are you?please keep us posted. bye for now. sorry i have no info to help your mind relax.

els

Veteran Member

Joined : Oct 2005

Posts : 4031

Posted 5/26/2006 8:00 AM (GMT -7)

Hi interesting, it sounds as if they are progressing pretty fast with you...they were like that with me as well. I have MS and have had it for 5 years now. But I also have just been diagnosed with Multiple System Atrophy a Parkinson's type disease that causes my blood pressure to drop really low levels and I pass out, which causes the falls of course. I have had to have 2 revisions done on my leads for the pacer and the 1st one was very painful as they weren't able to get me sedated all the way so I was awake for it, and the leads had been in place for 6 weeks and had scared in place already. Most terrible medical experience of my life I do have to say. The second was much better as I was totally out. I have been in the medical field my whole life and my mom is a nurse also who works on the cardiology floor at our local hospital. But when it comes to yourself it is a whole different story...Please do keep us updated on how your doing...take care Elisha https://www.healingwell.com/donate

interesting patient

New Member

Joined : May 2006

Posts : 5

Posted 6/1/2006 8:15 PM (GMT -7)

Just got out of the hospital yesterday. They say I had cardiac reactions to my first dose of Rituxan. My heart stopped beating for short periods of time. Couldn't place pacemaker/defib till I had 4 tooth extractions, tey did that while I was in the hospital the ther was no EP available to place it. But they called back today and are doing it on Mon. Sounds very hopeful. Now just have to stay healthy till Mon. No more pauses in my heart and no infections!!!! No more Rituxan till device is placed, and then only with monitors. Wish me luck.

els

Veteran Member

Joined : Oct 2005

Posts : 4031

Posted 6/2/2006 9:26 AM (GMT -7)

Much luck with your surgery...we will be thinking of you..take care Elisha https://www.healingwell.com/donate

alerdice

New Member

Joined : Jun 2006

Posts : 1

Posted 6/7/2006 4:52 AM (GMT -7)

To Interesting: Just wanted to let you know that you will probably do very well with your new

hardware. I was diagnosed with CHF in 1993, had a defibrillator installed about late 1995. It saved my life!! I had a very severe heart attack 1996 [in hospital slang they are called "Widowmakers". I had made it to the ER when my Defib. went into action. It literally knocked me to the ground. I felt like I had been hit between the eyes with a huge baseball bat!! This happened twice and was very unpleasent but it took my heart from 220+ beats per minute back down to a steady rythm. I got a heart transplant in 1997 and they gave me the defibrillator with my name engraved on it. Still have it.

Other than the 2 times it was doing its job, I never experienced any discomfort, problems, or had to make any special accomidations for the device. You'll forget that it's there except when you shower because you can feel it beneath your chest wall with your hand, but that's it. Also, it would probably be wise not to walk through metal detectors [like at the airport]. Just tell the attendant you have an implanted medical device and they will screen you by hand--no big deal!

Glad you're getting this lifesaver! Alerdice

interesting patient

New Member

Joined : May 2006

Posts : 5

Posted 6/8/2006 12:51 PM (GMT -7)

Thanks Alerdice, I now have my device and can frequently feel it syncronizing my heart beat. This is not uncomfortable but is some what disconcerting. I think you get used to it in time. I am having an intense burning sensation in my left upper arm which I assume is from disturbing nerves to make room for this rather large device. Pain pills help some with this. I am not a transplant candidate because I also have lymphoma. So I am banking on this device. I appreciate all of your support.

els

Veteran Member

Joined : Oct 2005

Posts : 4031

Posted 6/10/2006 8:13 AM (GMT -7)

Hi IP, Did you get and ICD or a pacemaker? I know for my pacer which I got this past September, EP has had to do several adjustments in the settings of it which do make a huge impact on how your going to feel. I have gotten used to mine finally and dont worry about it too much. I have a lot of scar tissue due to having to have 2 lead revisions done and my visible scar is pretty nasty looking. I still have some muscle pain from all the scar tissue but tylenol usually helps if it is too bad, the thing I have the most problems with is sleeping wrong. It is easy to get the pacer moved in the pocket since there isnt much tissue around it. I hope your device works well for you. Take care Elisha https://www.healingwell.com/donate

interesting patient

New Member

Joined : May 2006

Posts : 5

Posted 6/17/2006 4:21 PM (GMT -7)

Thank you els for all of your replies. I got a pacemaker called a biventricular device as it has leads in both ventricals and a defribrilator also. I had my optimazation done Tues. but I still am not getting much improvement in cardiac output. Then I got my second dose of Rituxan for my lymphoma on Thur. I had an alergic reaction again which is not supposed to happen!!! Now I have been having lite-headed spells. I am beginning to feel like a Pansy. I guess mabe my body is trying to tell me something. I was really hoping to go back to work. I guess it will take more time.

els

Veteran Member

Joined : Oct 2005

Posts : 4031

Posted 6/19/2006 3:28 AM (GMT -7)

Hi there IP, It sounds like you got the fancy model... . I have not had to have Rituxan or anything like that but it sounds terrible, I feel for you. I know when I got my pacer it wasn't until like 6 months or so that I started to feel better in that area. All the adjustments they kept doing to get the pulses right. Anyway, we are always here if you need us...Take care Elisha https://www.healingwell.com/donate

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