The Emotional Roller Coaster We Go Through – Knowing When it MIGHT Be The End

This is part 2 of "The Emotional Roller Coaster We Go Through" blog post series that a Twitter follower of mine asked me to cover. 

Surgeries, procedures and hospital stays seldom happen in an emergency. Most often, there are scenarios where family and patients know that in the future, there will be a surgery or some sort of hospital stay. And while in theory, having time to cope and deal with the inedible is a good thing, it doesn't always feel like it is for many. 

Knowing that in an X number of days you or someone you love will be put under for a risky procedure or surgery tends to be a double edge sword. Yes it gives people time to prepare and cope with the idea of what is going to happen, but it also gives them a time limit. I am well aware as I'm sure many patients who are old enough to be aware, and their families are that the day of surgery or a risky procedure could very well be their last. Some people say that they'd like to know how long they have left to live... I don't. I've had 4 open heart surgeries, 2 surgeries for my pacemaker/defibulator and over 20 heart caths. Due to complications in the past, even in "routine" procedures such as heart caths, I am aware well aware that I may not live through them. That I may not be able to come off the ventilator. Or that there could be complications. I have in some way been told how long I might have left to live and it does not empower me. It does not make me feel free or liberated. It terrifies me. And I'm sure it's the same for many patients and families of loved ones who are in the similar situation. 

I think the difference between my possible time limit and others who are given a time limit due to an illness that is too far long is that, my (and others like me) situation has hope. Those who are given an X number of months or years left to live are typically given those because there is no hope for a cure or treatment working. But me and many others with CHD, our time limit comes with hope. The reason we may die is for the same reason we may live. Open heart surgery. We know that without it, we would die eventually. But with it, we could either live for longer or die because of it as well. So while there is an excitement and hope that our lives will improve due to this surgery, there is that fear and knowing that we could very well possibly die from it as well. And even though you don't want to do it, you know deep down, you have to.

Would you want to know how much time you had left? 
How do you cope with the idea of another procedure or surgery? 

Hope and Love,
Becca

Next week I will cover the Preparing part of "The Emotional Roller Coaster We Go Through".

Sorry for the Slow Update

Hey everyone,

Sorry it has been a while since I lasted posted. Things have gotten a little crazy and busy with me, especially with my health. Let me just catch you up on what has been going on with me.


So a week ago tomorrow I boarded a plane for California to have my pacemaker/defibulator replaced along with having a heart cath on Thursday. Wednesday was spent in the doctor's office, talking about the procedure, doing pre-op tests and all that sort of stuff. When we finished there we went to see Circus De Soleil, 'Totem.' It was simply amazing. And to top off the night, one of the ushers offered me a booster seat to sit on for kids 12 and under... Haha. We got a good laugh and a few good pictures too.


Well Thursday came and I wasn't too worried. I figured it would just be a pretty quick procedure and I'd get out by Saturday without too many complications. And of course, it didn't go as planned. Apparently once I was under anesthesia, I started to have an asthma attack and the doctor was having a hard time keeping my breathing alright. The ability for my heart to pump out blood was not very good and is also elevated. However they aren't sure if these problems were caused by my lung disease (PH) or if it is a combination of the salt I ate the night before or asthma. So within a month or so they want me to have a CT scan to re-check those numbers and see if they have changed. Which means, I am going to be keeping my lungs as in check as possible and also keep to my low salt diet and hopefully see that those numbers have gotten better.


While I was in the hospital I also started having some more irregular heart beats. The doctors aren't sure why this all started. At first they thought it was because of the asthma medicine they had given me but we had stopped giving that medication for a day or so and the irregular heart beats were still there. They are starting me back on some heavy duty anti-arrhythmia drugs and will wean me off of those because the medication can cause problems for my Thyroid and in the long run can hurt my lungs. They are hoping that maybe just the stress of the procedure was all that caused this and that it isn't anything new we have to worry about.


On top of that, the site of where I got my pacemaker/defibulator put in got swollen with a pocket of blood so they had to put a pressure bandage on the site for two days. The pressure bandage at first really helped with the pain. It actually felt better to have the pressure bandage on then without it at first, but then my body started to have a reaction to the tape and now the top layer of my skin right under my armpit has been peeled off. It hurts to lift my arm because the pacemaker/defibulator just got put in and the skin under my armpit is very sore from the bandage. However, I can still use my right arm and hand. Too bad I am left-handed and not right. Haha. I am hoping that within a few days though, the skin on my armpit will have healed a bit more and I can move my arm a bit more freely.


I can honestly say that this is not how I pictured spending my first college Spring Break. It has only been a week since I have been home but it feels like a lifetime. I had been worried about having to stay longer than planned and missing out on life. Thankfully I didn't miss as much as I have in the past when I have been hospitalized before, but it is still hard. Lately I have felt so healthy, so normal and now I feel so tired and drained. I know that I'll get my energy back up soon once my body starts to heal, I just hate having to wait. I'm not very patient person and I am already so tired of being weak and sore from this surgery. Just want to get back to my life and start to feel like I did before the surgery. Normal.


Thank you all for your prayers and love, I really appreciate it. I couldn't do this without you guys!
Love,
Becca

Want to go Home

Hey guys,

Today I leave for California around 6 pm. The original plan was to have me home by Saturday at some point since my surgery was on Thursday. But my mom got an e-mail from the doctor today and she said that they want me to stay even longer. I have to spend the night on Saturday (not sure if its in the hospital or just in town.) because they want to make sure I am doing okay. I haven't even left yet and I already come home... I'm not ready for this surgery. Not ready and I don't want it. I put off packing my airplane bag until today. I keep thinking maybe if I don't pack or if I put off packing till the last minute, we won't go. But I know that won't happen. 


I'm not scared of dying because I really don't think I will. I'm scared of something going wrong and I'll have to stay there even longer than we planned. I'm scared of missing out on life again. Sixth and eighth grade I was really sick and I was in and out of the hospital so much during that time. I missed out on life and now that I am healthy, I don't want to go back to that. I feel so great that I hate even the idea of being cooped up in a hospital room. I have a job, I am in school, I have a life. I don't want to miss out on that even for a few days. I feel so normal,why can't my health just let me feel that way and leave me alone? 


Dreading Leaving, 
Becca 

Doctor Visit and School

Hey Everyone,

A week ago yesterday I went up to California for a doctor appointment. Things are looking pretty good except that the battery on my pacemaker/defibulator is running low. We are planning to have it replaced during my Spring Break so I will not miss any school. While I was up in California we also stopped by to see a friend I have known since I was a baby and went to camp with who is up there. He has an infection at the old site of where the pacemaker was put in so they had to move it. His heart is tired and they don't know what the infection is. If you all could keep him in your thoughts I would appreciate it so much. 

School is going pretty good. The only class I have a problem with is computers but that's because the teacher doesn't teach and she isn't very organized. The majority of the class does not like the class either. So I'm not alone on this one. Speaking of school, I have already signed up for classes for the Spring Semester. I am taking Psychology 101 with a friend of mine named Gabby so I will know at least one person in that class. I am taking Math 120 (wish me luck!), Bio 156 and English 102 with two of my friends which will be nice. Well not much else is new here, hope all is good with you guys! 

Love,

Becca