ICD Follow Up

I am not doing too good at updating this blog.  Maybe there is a subconscious reason for that.  I don't know.  I had my 2 month ICD follow up appointment this month.  Everything looks good.  It feels weird when they have to speed up my heart rate for a couple of seconds.  It is an uncomfortable feeling.  I get anxious when they have to do that.  That is a feeling I don't want to feel on my own, that is for sure.  The doctor looked at my scar and said it is healing okay.  I asked him what that meant.  He said that medically it is healing great.  It is closed fully.  Does not look infected or anything.  He said cosmetically he should have done a better job at closing it.  He told me that he normally does a straight incision, mine is diagonal, and he usually gets it closed better making a much smaller smoother scar.   For that, he said he was sorry.  I told him that all is good.  I have gotten used to the scar and I am okay with what it is representing.  Without this scar, there would not be a machine in me to keep me alive if my heart were to go into a bad rhythm.  I told him that while I appreciate the apology, it is not needed.  I go back in 6 months for another checkup with him.  Meanwhile I have had to postpone my regular cardiologist appointment because of scheduling conflicts with my husbands job.  I am not taking 3 kids to a doctor appointment.  Not on my to do list.  So that will happen at the end of May.  I think everything should go well with that visit too.  Maybe just an up in my medicine doses. 

Wear it proudly

Back in January, I was having some chest pains which sent me to the hospital.  All was fine but they decided to go ahead and put in an ICD.  That was scary stuff.  It has been a few weeks now since I have had it done and now I have a scar on my chest.  The made the incision diagonaly so it is not like I can hide it with my bra strap or anything.  But that is ok.  This scar means I am alive. And I am going to wear it proudly.  This scar means I have a testimony.  I have a story to tell.  I am not afraid for people to ask about it. 

What just happened?!?!

I went to the hospital Sunday night because I had some chest pains for a few days.  I thought they would pass but they stayed.  I called my Cardiologist and they told me to go to the emergency room because it was new chest pains.  I waited in the er for over 6 hours just to be called back.  They did EKG and blood work and everything was fine.  Because it was chest pain they wanted to observe me overnight.  So I stayed.  They did another Echo on me and that came back good.  My EF went up.  It was at 15% but now is up at 20%.  Still too low, so they wanted to do an ICD.  Let me tell you I had a few breakdowns.  I had some visitors.  I had to be strong so they did not worry about me. They kept saying this was a minor procedure and everything would be fine.  I understand that but it is my heart.  You want to put wires into my heart? Come on.  I know it is the next step in my treatment but geez.  This was not supposed to happen until next month.  Anyways, after talking to many doctors and the guy who was gonna do the procedure, I decided to go ahead and do it.  They can't do it until Thursday.  Great, now I have to wait a few days in the hospital and be bored.  I know some people probably would love to stay alone for a few days.  Not me.  I wanted to be with my kids.  I needed to be home with my husband.  I have things to do.  But I wait. And wait.  Thursday came.  I am anxious.  Nervous.  Why can't I be normal and healthy.  What did I do wrong to deserve this health issue.  My husband was dropping the boys off at school and then was gonna come straight to the hospital so he could be there with me.  I was scheduled for 11am.  They came in at 8 telling me they were ready.  I need my husband.  I can't do this procedure without him at the hospital as my support.  I call him and he tells me to tell the doctor no.  So I told them that I needed to wait until John got there.  John walks into my room and I breakdown again.  Finally around 10:45 am they come in and get me for the procedure.  They wheel me down to the operating room.  They want to put me to sleep.  Wait?!  I'm supposed to just be sedated but still awake for this.  Why do they want to put me to sleep.  They told me that I was too nervous and they didn't want me moving at all so they wanted to put me to sleep.  I have never been put to sleep before.  I was scared.  Next thing I remember is I'm in the recovery area trying to wake up.  I'm in a lot of pain.  I thought I was dreaming.  Guess not.  Everything went well.  I'm home now.  I hurt.  I'm trying to get back to normal.  Taking care of my boys.  Doing housework.  Trying to rest in between doing everything.  I'm still sore.  I can't move my arm too much.  That is not fun.  But I guess it is all good just so that I can have this reassurance that if anything bad were to ever happen to me, this would be my backup.  I should probably name my shocker.  

This sucks

My kids have been on Christmas break for the last 2 weeks.  It has been kind of hard trying to keep up with them and with all the holiday get togethers and everything that needs to be done for the holidays.  I have really been getting tired quicker.  I have already had a few days where I just lay on the couch and have my kids all sit on my or in front of me and I just put on a movie or let them play the wii while I just lay there and try to rest.  I wish that I could keep up with them.  I wish that I can clean my house without getting so tired so quickly.  I wish I can run around the yard with my boys.  UGH.  Stupid disease.  It is not fun at all.  I want to be back to normal.  I do not want to have to deal with my New Normal.  It is not fair.  This sucks!

My fun little contraption

When I got diagnosed with Dilated Cardiomyopathy, I was told I should wear a life vest.  No, not the big bright orange things you wear on a boat.  It is an external defibrillator.  It has not gone off as off yet, thank God.  I have had to wear it for over 3 months now.  I am unsure as to how much longer I need to wear this.  I know the Dr. needs to do another echo to see how my heart is responding to the medicines.  After she looks at the results she will then decided if I need to continue wearing this or if I need an AICD or if I need nothing.  I am hoping for the latter.  Actually, I kinda want the AICD just so that I can have the reassurance that if I wear to go into Cardiac Arrest I will be ok because it will shock my heart back into rhythm.  But for now I am wearing the life vest.  It is kind of uncomfortable.  Imagine wearing a bra 24/7.  That is what I have to do.  I have been wearing it so long now that I have bruises/welts from wear all the leads are.  It is also a little irritating from where the fabric digs into my skin but I guess it is a small price to pay for reassurance.  As much as I dislike wearing it, I am glad that I am.  Whenever I take it off for a shower I worry if something is gonna happen while I am in there and not wearing it.  Im so paranoid.    But oh well. 

Gotta assemble it after I wash the white part

 

All assembled now and ready to wear

This part I wear outside of my clothes

 Just wanted to give a little information on what I deal with daily =)  Have a blessed day everyone!

A great adventure

We got back from our vacation on Sunday.  We had a blast.  It was a great week of family bonding.  The kids loved running around outside and inside.  The house was huge.  Georgia is so beautiful.  We got there after all the fall colors but there were still some trees that had fall colors.  We also went to Tennessee and man, that is where I would love to move too.  The mountains were gorgeous.  I loved just driving and looking at all the pretty scenery.  God sure made an amazing earth! 

The downside?  I got tired and short of breath so quickly.  Throughout the week we climbed a couple hills.  No one else was winded.  I felt like I was gonna pass out I was breathing so hard and doing my best to keep up with everyone but I had to slow down.  That part was not fun.  It is kind of funny that I never realized or recognized that I got so short of breath so quickly before being diagnosed with Cardiomyopathy, but now that I know I have it, I pick up on my symptoms so easily.   I am glad that I did not quit any of the adventures that we went on because I would have missed seeing some amazing sites.  Had I quit I would not have made it to see a double waterfall in Fall Branch Falls in Georgia.  I would have missed a great adventure with my husband and my sons.  I might have to take things slower and more cautiously but I can still do things and I am not going to let this disease hold me back.  I am going to enjoy life and live ever moment to the fullest.

Vacation

I'm super excited to go on vacation thanksgiving week. We are all going to Georgia to stay in a cabin for a week. Our family is so in need of a vacation. The kids are excited to be going to another state. Here in Florida it's warm most of the year and were hoping it snows so the kids get to experience snow but even if it doesn't it'll be a fun trip. Lots of fun activities will be done. But having a heart condition I have to take some additional stuff that I would not have had to in the past. I have to bring my scale and blood pressure machine to continue monitoring my vitals. I gotta make sure I bring all of my medicines and not forget them.  I'm bringing my notebook that I'm writing everything down in. I also would normally walk and hike and all that fun stuff with no worries but I have to stay aware of my body and how it is handling everything. We're going up in the mountains so I have to worry about altitude having an affect. I've even heard that colder weather can have an affect on how the dart works so there's so much more to this than just going on vacation. Gotta make sure we know where the closest hospital is "Just in case". But with all this extra worrying I'm gonna have a blast with my family and I can't wait to go!!