too much
I've only had my pacemaker for about two months now. I am only 25 and I've been having problems for about 2years now. I went in for an ablation and during the procedure they paralyzed my diaphragm causing me to have problems breathing. I had my pacemaker implanted a week later and haven't felt well since. I struggle to breathe, i can feel and see my pulse in my neck, and feel weak. I have been to the cardiologist so many times in the last two months that Im on a first name basis with the receptionist. I've been on monitor after monitor and now they say that Ive been having episodes of sinus tachycardia. I thought my heart wouldn't go fast enough to function...how does it go fast enough to be tachy? Im ready to start seeing a therapist to deal with all of this because its getting to be too much. I can't handle everything going on with my health and as a result Im going to lose my marriage and my job has already been really understanding. How do I explain to my kids whats happening and why I can't do things like I used to? Im so confused and I feel like no one has any answers...even the doctors seem confused. Its pretty bad when they are considering a referral to mayo clinic becuase they don't know what is caused by the dmage to my diaphragm and what is caused by the heart. There isn't even any treatment for my diaphragm.
5 Comments
Counseling
by Heidiglassmeyer - 2010-11-09 01:11:17
Ambers,
I am sorry to hear about what you are going through. Early in the year I went in for an ablation like you thinking, yea! i'll be fixed! During the procedure my EP had to ablate my AV node hence PM member. Itnwas hard enough to deal with having to have a PM. I can't imagine what you have gone through with your diaphragm.
A few months after implant I started to have symptoms that occur with a rapid rate. After numerous hospital stays, medication changes, and setting changes, I am also left with frequent, daily, sinus tachycardia. I asked my EP where did this come from?
Having ongoing issues after PM implant is very frustrating. I think everyone looks at me like, you have a PM so everything should be fine, but it's not.
I also have two young children and a career. It is hard for the kids to understand why you can't do all the things you did before.
This is a lot to deal with and I would highly suggest seeing a therapist. For myself I can tell you that I now understand ST and although it is frustrating I have come to terms with it and remain on medication. I have tried my best to explain to my kids (4&6) what my PM does and why some days I may not be 100%. They are starting to understand. I am glad to hear that they have been understanding at work and I hope you are able to resolve issues you may have in your marriage. Maybe the therapist can help with that.
You are not alone and I hope you are able to get some answers and be on your way to feeling better. If I recall correctly there is a recent post from a member who had the same issue with their diaphragm. You may want to do a search on the topic and private message that member.
Sorry for the long response and I wish you the best!
Heidi
Mayo Clinic
by Pookie - 2010-11-09 12:11:32
I was sent to the Mayo Clinic and was seen by a wonderful cardiologist. His last name was McRae if I remember correctly. The Mayo I went to was in Minnesota.
If your doctors are willing to send you to the Mayo, my advice is to go because they will spend the time to figure things out. And they don't rush you. They explain everything to you as well.
It's just my opinion but by going to the Mayo you will get a new set of eyes to look at your current issues and all of your reports and tests will be sent ahead so I amm pretty confident that they should be able to help you. It's worth the trip!!!!!!!!
And in the meantime, yes, by all means, seek some counselling, you need to be able to vent. A lot of us sought that kind of help after receiving our pacers or defibs. You need a support group, which could be us:) but you need to be able to sit with someone and be able to open up all your fears, etc. It helps..I promise. The first few sessions I came out feeling like I didn't accomplish anything but that was because the first few sessions is when you are really giving the counsellor or therapist your background. But in time they will give you hints, tools, ideas to help you through rough times.
Never ever ever give up hope. I know it's hard. I've been where you are. Just believe that you will find your answers...and you will.
Stay strong and like I mentioned earlier, if your doctors are willing to send you to the Mayo - GO!!!!!!!!!!
Take care,
Pookie
coping
by Tracey_E - 2010-11-10 07:11:29
I'm sorry you've had so much to deal with! Ditto Pookie's comment about Mayo. They are one of the finest in the world and I think it's wonderful that your dr is open to sending you there. So many of them can't admit when they don't know what to do and will drag things out and let the patient be miserable instead of finding another expert to consult.
If you think a therapist will help, go for it! I've done it myself more than once when I was simply overwhelmed and didn't know how to begin to deal. It works.
How old are your kids? Mine are 12 and 13 now but my problems are congenital so I've had things come up off and on all their lives. I feel like I walk a fine line between telling them enough so that they understand but not so much that they over think it and are afraid. Kids are tough and resilient, often more so than us. They're also young, not blind or stupid which means they pick up on WAY more than we think they do.
Is marriage counseling an option? I don't know anything about your situation so I won't speculate, but sometimes they freak out and shut down out of fear and they could use a little help coping also. Things like this affect the whole family, not just the one with the health issues.
Good luck!! There are a lot of us here who have been around this block a few times and we're here if you want an ear or a shoulder.
Thanks
by ambers - 2010-11-10 08:11:51
Thanks to everyone and I really appreciate everyone's responses. I have been told that after 2years I will be referred to the mayo clinic in hopes that there is new medicine to treat my diaphragm. My kids are 6 and 7 and I worry about telling them too much but we are learning where the line is. They are really struggling because my daughter and I used to go running and my son and I used to play football and soccer.
As for therapy, I have decided to schedule an appointment but its taken a lot of thinking becuase I work in the field. My marriage was struggling before PM, its just a little worse now. Maybe I just realized that there are more important things than materials and he hasn't caught up to me yet. Health issues have made things so much worse because I don't tell him when I don't feel well and so he assumes I am fine. I've never been one to show when I hurt or am having problems because I don't want to seem like Im milking it. Its a communication issue and I guess i don't always think about how it affects him.
Thanks again for everyone's posts. I really appreciate the advise and feedback. Its really nice to know Im not alone because I guess I thought everything would be all better after the PM. I didn't realize what a process it is.
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Member Quotes
I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.
New but understand
by lanew - 2010-11-08 10:11:11
My dear friend, you seem to be going thru alot, a therapist may be able to help you sort things out, I do understand how it feels to have your plate full. so far my wife has stood by thru this PM thing, but it can be trying I'm sure at times for her. I only have had this PM for 5 days and I really thought it was going to turn my life around and I would feel great. but so far I feel worse. she thought I was crazy and all this was just in my mind until the Doctor said no he needs a PM, I wish I could take all your pain and troubles away, I can lift you up in prayer who I know can fix everything. stay strong and don,t give up. it will work out with a good outcome. Hope to here from you soon with good news.