I am not amazing. The men and women who jumped in and saved my life are beyond amazing. They do this day in and day out, they are doing things that not many do or can even fathom. They give their all to help so as many people as possible. No I do not consider myself special, but thankful, to those you saved me. Thanks to all who saved me.
Getting back into routine
It really was nice having my brother and his family here. We hadn’t seen each other for years, he was working all over and had to move. My little brother and sister also have some distance from me. I didn’t realize how much I missed being around family. It was nice because it helped to get back into routine but not like just thrown back in. Also having all the kids around each other I think was a good distraction for my two kids.
I kept up the walking, it was still pretty hard to do. On the walks it gave me time to be able to think. I still had such a euphoric feel about everything. I won’t lie, I still wasn’t grasping significance of what all happened to me. All I really felt was my life had changed, and I would have to take the steps to change it, how I wanted it.
Rejected
In the animal world, sometimes when a young animal is taken from it’s mother for whatever reason and then reintroduced, the mother and/or herd will reject the off spring as if it is not its own. Like the herd/mother know that something is now different with their young and they can’t go back to the way they were.
For me when I first got home my kids I think were afraid of me. I don’t know what all was said to them. The only thing that was said to me was that in the hospital they were told not to climb on me and that they couldn’t really touch me. It was hurtful, I so badly wanted to just hold them. I didn’t want to be mad or resentful towards them, because they are kids and they had been through so much and they can’t comprehend the magnitude of the whole situation.
I did feel rejected I decided at that time not to hold it in or turn into a negative, but turn it into a chance to have the relationship I have always wanted to have with them. Before I think I was distance and not as engaged with them as I could be. Being a stay at home mom you try to balance keeping up on the house, what meals to be made, I forgot to just stop and hang out with the kids. Before the SCA I was just so swallowed up in my own depression, I just didn’t have the energy to be there for them like I really wanted to.
I didn’t push them to be with me or even to hug me, I really let them lead the way. I still don’t know if I should say I was sorry for everything or not. I did talk with my son, because he is old enough to understand more. I just told him I loved him and if he ever had any questions or thoughts about anything, that I would happily answer him. Just by keeping the communication open I think has helped to start to rebuild the relationships with them.
More weak leg tales
When I got home, I needed to go downstairs for something, both my husband and my brother wanted to help me but me being so stubborn refused their help. At the second step I went down on my butt all the way down…. And then still needed help to get back up.
One night we went out to eat at a local brewery, this was really the first time I was out in public. It was nice because it was my brother and his family with us there. I had to go to the bathroom, so I excused myself and went to the bathroom. There was someone in the handicapped bathroom and I figured I would just take the little, cause I really had to go.
I finished and realized I didn’t have the strength to get off the toilet without some sort of assistance. I thought maybe I could use the toilet paper holder but then I was like um, I could see my self putting my weight on it and ripping it off the wall, I would fall down with my pants down unable to pull myself back, I would have to wait there until someone found me. So that idea was down the toilet.
I tried to press my arms up against the walls and shimmy up the walls until I was able to stand. Trying that didn’t work, I still didn’t have enough strength to do that. I was starting to freak out, how was I going to get out of this stall. There was nobody in the bathroom, so I thought maybe if I just slide off the toilet and then push off the toilet with my hands that might work. With no one in there to see my this possible epic failure I went ahead and did it. Success, I pulled my pants up and went straight to the sink to wash my hands. Thank God no one was in there with me cause I am sure someone would have been like ” what the hell is wrong with this crazy lady”. I was so embarrassed, I didn’t tell anyone about this.
Belly shots
Coming home I still had to do shots of blood thinners to my belly daily. That hurt like hell, I don’t know how people who are diabetic do it. I have been told that in the hospital while I was out they would do it and it looked like they were shooting darts into my belly. There is no way of being gentle while giving or receiving these kinds of shots. I couldn’t do it to myself, so my husband had to do it for me. I cursed him out every time. I didn’t have to do this very long, I was able to go on the pills pretty quickly.
Comin’ Home
The day finally came to got out of the hospital, I was looking forward to not being in a hospital gown, and not to be so sweaty. For some reason even though I was cold I was always sweaty. Grabbed my bags and all of my instructions on my medications, how to take care of my incision and off I went. It felt like such a relief to walk out of those doors.
The drive home I felt so euphoric. The trees, mountains and just the colors seemed so vivid, crisp and fresh looking. The drive seemed to move in slow motion, it was like I could see things on the drive I never saw before. I just couldn’t wait to see my kids.
Implantation
Part of having LQTS is that the doctors generally want you to have an ICD (Implantable Cardioverter Defibrillator)/pacemaker combo. An ICD, what they do is set a range of where your heart rate can go, some ranges are like 80 to 170, something like that. If your heart goes above or below this range you get a shock. A pacemaker helps keep your rhythm in check, what this does is it sends electrical signals to the heart. It can help speed up a heart, keep ventricles beating and not quevering. This device is incredible, just how much such a tiny little battery operated thing can do.
When I was told that I was going to have this implanted in me however, I wasn’t just hesitant about it, I flat out didn’t want something forgien in my body. I really wanted some time to be able to take it in. I honestly didn’t know exactly what this device was at the time or how it was going to change my life. I was told that they wouldn’t let me come home without it placed in. I was pissed, but I signed the consent form, because I just wanted to go the hell home. I was still coming off all the drugs, I was physically and mentally tired and here we go more drugs.
Of course, this was placed in on Friday the 13th. Luckily for me one of my friends was a nurse in the cath lab thing, she was able to come in with me. Pretty sure I got her in trouble, cause I wouldn’t shut up. Coming out of this wasn’t bad, had to keep my arm in a sling and ice it some. I totally stretched out the scar where they put in the ICD, cause I couldn’t “take it easy”.
This video is kinda long, but I thought it was the best one. Other ones were all computer generated. If you are not into surgery videos don’t watch. All I can say is wow, I have that in me!
If you don’t use it, you lose it
I will never take walking for granted. It is unbelievable how quickly your muscles lose their strength. I didn’t realize how much it takes to be able to just walk. When I first started to get up and moving I had to be assisted. I had someone walking with me and a little push cart (it even had a seat). My legs felt almost like after you have had a really extremely hard workout, your legs shake and feel kinda jell-o like. I didn’t get very far, a little embarrassing but the short distance I did walk I worked up a sweat and needed a nap.
After I got disconnected from all of the IVs I walked as much as I could. Honestly, I was going stir crazy, not one to sit around and do nothing.I did enjoy being able to walk outside by myself. Feeling the heat from the sun on my body really helped my bones feel warm, my hospital room always felt so cold. I walked all over the hospital, and outside at the labyrinth that the hospital has. It was amazingly hard and exhausting to do, and I was very frustrated with myself. It’s one of those things that you know you should be able to just go, but you can’t.
It has also given me a much different perspective on people who have disabilities/illnesses that effect the way they walk. What so many can do with absolutely no thought, for some every movement is carefully thought out and possibly painful.
Silence and sinking in
Before you read into this post, let me explain something. Going through something like this tends to bring up feelings and emotions that you never thought you had and some that you thought you had long buried away. There has been so much in my life as far as my emotions and feelings, that I kept inside. A lot of the emotions and feelings that I went through and felt were and continue to be some of the most raw things I have ever had to grabble with. For me, I think this was a starting point of acknowledging on these emotions and feelings.
The first time, that I recall being by myself in my hospital room, I lost it. I think I just finally had a chance to breath. For weeks I had tubes in me, blood work, alarms going on and off, pretty much stripped naked, and had ridiculous amounts of drugs flowing into me. MRIs, CT, I don’t even know how many x-rays, frozen and unthawed.
The gravity of what happened was slowly starting to make it’s way in. My loved ones being told to kiss me good bye, that at that first 24-48 hours, I was considered pretty much as a no hope case. Not sure I have or really will be able to understand how much this effected everyone around me.
As I set in my bed crying, I thought of how unhappy I was. It maybe selfish to have been thinking this way but it was how I felt leading up to this event. The feeling of being incomplete. I thought I had nothing to really to give my kids. Unaccomplished, I never went back to school and I didn’t think that I had real skills to be a productive person. These feelings of inequities, just created a quick sand. I was fighting and the more I fought the further I sunk down. I couldn’t figure out how to get out of it. I will admit, I never knew how to express myself emotionally, except to hold it inside and not show how you felt. I never wanted to hurt anyone so I did allow for people to push my comfort zone, because like so many I didn’t want to hurt anyone, but I was hurting myself. I had an enormous amount of anger that could spill out, it was easier to show than the hurt. I do really feel like years of holding in my true feelings and caring around the anger added to the stress on my heart.
This moment I think has helped me really look at my life going forward in a more positive way. Not saying I still don’t have moments that are hard or hurtful. But that I am able to view things from a different perspective than before. Also, having this low point I think has made me take a proactive approach to get what I want and where I want to go in my life.
Blood clots and another dance with Phenergan
I got a blood clot in my lungs and a clot in one of my legs. I do remember the pain in my chest was excruciating. I also remember one of my doctors getting pissed because the order for the pain killer wasn’t being filled quick enough. They gave me the pain killer and they figured the pain killer would make me sick, so they decided to give me another dose of Phenergan. They also figured they would find out if the Phenergan was what gave me the agitated reaction.
Oh it was, but this time the reaction was so much worse. I tried to pull out all of the lines and needles in me. I thrashed, I cursed… I probably was beyond an agitated state. I was restrained and all of the nurses, doctors left, I guess they didn’t want to deal with the madness that they helped create. My husband stayed with me, I bit him a few times. This lasted for 2 hours, and I am happy I don’t remember any of this.
You know how in those zombie movies how there is always at least on zombie that they tie up and yet it fights and still tries to bite, that’s what I imagine myself to look like.
In all seriousness, I just want to thank everyone who had to deal with me at this time. Oh geeze, I am pretty sure I would have done the same thing. I would have actually slapped myself also, I am not a raging dick.