Out of the Hospital

Hey guys,

So if any of you follow me on Twitter, you may know that I was in the hospital. I was having irregular heart beats and my heart rate was getting up into the 130's. On top of that, these episodes were lasting up to two hours. Needless to say, when that would happen, I would be exhausted afterwards. So while in the hospital, they put me on some more medication to help stop these irregular beats from happening. While these episodes are not dangerous or life threatening, they were extremely uncomfortable and made me beyond exhausted. 

I am out of the hospital, and the episodes are not happening as often nor lasting as long. However, the medication I am on for them can (and has already) created problems for other parts of my body such as my Thyroid. So after I finish up school for this year, I will be going up to California to see the doctors up at Lucile Packard Children's Hospital to discuss two medication options. One of the medications though is a Beta Blocker so I may not be able to use that (for a reason my mom and I cannot recall, we just remember in the past they did not want me to be on one). And the other medication, we just have to make sure it does not interact with any of my other medications. And if none of the medications work, the other option is a procedure called ablation. However, that would be a last resort because of the risks that come with putting me under for a procedure. 

I am home now, but I have noticed that I am not feeling as well as I have been in the past. While I was in the hospital, I was on a strict low salt diet to help lower my water weight, which would then help my heart function. Well I got home and weighed the exact same... which is odd because I should've lost at least some weight. What's also a little worrisome is that daily activities that I have been doing for years without a problem suddenly make me out of breath. The other day I walked around my house to put away some laundry after folding them. I have done this ever since I can remember and never got out of breath before while doing this. I had to sit down and catch my breath. The other day I parked right in front of a building, walked inside and was out of breath. Not like I had to walk a long way or anything like that. So the topic of getting an ECHO to see if my heart function is the same or worse. I want to know... but on the other side... if it's bad news, I don't want to know. 

I'm hoping that maybe I'm still just recovering from being in the hospital and what has been going on. I am staying on my low salt diet, so it doesn't put anymore stress on my heart than it already has. I will keep you guys updated! 

Thanks so much for all your support, prayers and love! I appreciate it more than you could ever know!

Becca 

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

Hope in the Hospital

Hi Everyone,

I went to visit two heart kids the other day at the hospital. My mom and I make an effort to go and visit the kids and their families whenever we can because we know how much it meant to us when people would come to comfort us when we were in the hospital. Both were little girls. I had met the other one before and last time I saw her she was full of energy; pulling at my necklace and jumping up and down in my lap. The day I went to visit her though she was extremely tired and she had been sleeping most of the day. It was just another reminder that one day you can be full of energy and then the next feel like you had nothing left in you; especially for heart kids when they are already so tired as it is. She celebrated her birthday on Monday and her mom got teary eyed when she said she had been hoping she wouldn’t have to celebrate another one in the hospital. I gave the mom a smile and told her, “She is young and won’t remember this birthday anyways. But what’s even more important is that she got to celebrate a birthday period.”  

The other little girl I went to visit was a little ball of fire! If she didn’t have the IV in her hand at first glance you would never have known she was sick; until you took a closer look at her and saw her blue lips and fingertips. This little was running all over the place, not giving a care in the world that her IV was pulling at her. We sat down on her bed while my mom and her mom talked quietly and the little girl started to put stickers all over my face as we laughed and played with her SpongeBob doll. A nurse came in and took her temperature and then asked to check her oxygen with the small pulse-ox. She started to cry and say she didn’t want it. (The pulse-ox is just a small piece of tape with a light on it that is able to see the percentage of air you have in your lungs; it doesn’t hurt or anything.) As the little girl cried and said she didn’t want it, I couldn’t help but blame her. While she very well knew it wouldn’t hurt, she still didn’t want it. She didn’t want anything more on her body. She didn’t want anything more done to her. She just wanted to sit on the bed, eat her Doritos and play with her toys like any other normal little girl should be doing. But instead she is cooped up in a hospital room with an IV stuck in her arm and having people poke and prod at her at all of the day and night. I placed my hand on the little girl’s lap and asked her if she would put it on if I did. She said yes and told me she wanted me to wear it first, so I did. She clapped when the machine said my oxygen was at 94% and then she gladly helped the nurse wrap the equipment onto her tiny finger with a big smile on her face. This little girl’s oxygen was at 77% but she had just as much excitement and energy as any other little girl I have ever seen. Once the nurse left the little girl crawled into my lap and told me, “We both have funny hearts.” I held back tears and gave her a peck on the top of her head and said “Yes we do.” When it was time for my mom and I to leave the little girl turned to her mom and repeated with tears in her eyes how she wanted to go too. She kept begging her mom to let her go home. I know the feeling all too well. . . While I know that the hospital is the best place for me when I am sick, I never want to be in there. I never enjoy being in there as a patient. I remember in 6^th grade I would cry to my mom and I would beg her to take me home. I remember telling her “Mom, I’ll even eat that horrible meat you cook if you just get me out of here!” I realize now though that my mom and dad hated me being in there just as much as I did. But I got out of the hospital and I have been able to live these past four years of my life like any other regular teenage girl. Gone to prom, went on Spring Break with my best friends and graduated from high school. I have no doubt in my mind that the two little girls I visited the other day will do the same.

Love and Hope,

Becca

Hospital Prom

 

Hi Everyone,

So about 2 weeks ago I went up to California with my mom and dad for a doctor appointment. Things are going good, nothing new except in about a year or two I will need a new battery in my pacemaker/defibulator. Other than that the only change is that I have some irregular heart beats but they aren't too worried about it.
At Lucille Packard Children's Hospital they have a school inside their hospital so patients that are either in the hospital or too sick to go to school can go to school there. They also allow siblings of patients to go to school there as well. It is part of the California public school system and has 1st grade through 12th grade.
This school also hosts a prom for all their students, not just high school; but everyone. The families of patients are allowed to come and stay as well; and even some hospital staff drop by to say hi and see what is going on.
Every year they pick a new theme for the prom and this year it was 'Traveling Around The World' The decorations were amazing! They made the Golden Gate Bridge, the pyramids, the Eiffel Tower and many more other landmarks for you to take a picture by. All the helpers were dressed up as either pilots or in traditional clothing from different countries. Along with dancing, food and crafts they also had gambling! (I must say, I am pretty good at Roulette and Black Jack!)
But what I love most about this prom is that no one is left out or judged. During my appointment they asked me to put on a Halter Monitor, which is a portable heart monitor. I wore it for 24 hours and I was able to take it off right before I went to the prom. I wouldn't have liked wearing it to the prom because it is itchy and TOTALLY did not go with my dress; but I know that if I had to, I would've much rather worn it to this prom than the prom at my school. The prom at my school while it was fun and I got to go with my friends, it was a snobby fake event where people judged one another based off of how they looked, what they wore and who they came with as their date. This prom wasn't like that at all. You could sit down and talk to anyone without feeling like they were judging you or making fun of you. This prom was for everyone. Whether you came in a wheelchair, with crutches’ or with an IV stuck in your arm; you were welcomed and loved for who you are. Wouldn't it be great if life was more like the Lucille Packard Prom? I think so.
Love,
Becca

Doctor Visit

Hi Everyone,

I got back from my California last night. Our plane was delayed so I didn't get home till around 10:30 PM. My doctor appointment was pretty un-eventful, which is a good thing. They took me off of one of my medicines and put me on another, since the previous one I was on could cause lung problems along with Thyroid problems; hopefully with that medicine out of my system my Thyroid will go back to normal. Other than that, there were no changes. My pressures were still 80 - 85 (a normal person's Pulmonary Pressures are 10-15!) At some point they may take me off of another medicine and replace it with another; but at this time, they are not doing that.

I got to meet a little girl from California who has the exact same thing as me. She is 8 years old and had her 4th open heart surgery about a week or so ago. She was adorable. =) I always love meeting little kids who have heart defects because seeing an older kid with their defect really helps give them and their families hope. If I was able to grow up, then their kid may be able to as well. And I know that kids with heart defects need as much hope and help they can get. When I was talking to her about camp, how we both had Pic Lines at some point in our life and how we both have scars; she just randomly came up a hugged me tightly around the legs. I leaned down and wrapped her up in my arms. Later on the nurse talked to my mom and told us that the girl was extremely shy, so it was amazing how she felt so safe and comfortable with hugging me after she just met me.
Its tough being chronically ill, but if I can give a kid some hope and realize that she will be able to lead a relatively normal life, then I don't mind having a chronic illness.

Love and Hope,
Becca