I Usually Deal With Things Pretty Well... But Today, I Just Had To Cry

As some of you may know, in the past few weeks I've had a difficult time breathing and I get out of breath a lot quicker than I used to. I told my doctors about this and they wanted me to do a lung function test. And according the Pulmonologist, my lung function is considerably worse than it was in October. My doctors up in California want me to get a lung CT Scan done to make see if I have something called Pulmonary Fibrosis which can be caused by one of the medications I am on. Honestly, I would much rather have this Pulmonary Fibrosis then the alternative which is - my Pulmonary Hypertension is getting worse because with that, there isn't much they can do. With PF, it is treatable and we may have to do some switching of medication. But that sounds a whole lot better than going to talk about a heart-lung transplant. 

I have noticed though that I am not feeling nearly as bad as I was about a week ago - which is good. Which is kind of what makes this so frustrating. I feel pretty normal, and my quality of life has not gone down hill. So why are my numbers so bad? 

During my doctor appointment, my doctor told me that I have a great attitude about what I go through. And for the most part, I think I do as well. But today, with my mom beside me, I had to cry. I keep it together most of the time, I suck it up and deal with what life is giving me. But I told her today that I just want a break. I just want a break from the doctor appointments, a break from the what-ifs, a break from the medication. But most importantly, a break from my CHD and PH. I told her that I pretty much take whatever life throws at me, and I usually don't complain. I am able to laugh and enjoy most days. I make a choice to do so. And what is so frustrating to me and what is so scary about this right now is that I feel pretty darn good. So why are my numbers so bad? That's what is so frustrating about this whole thing. 

I don't talk to people about the fear, the exhaustion, or how sometimes I just want to cry. There is a handfull of people that I talk about this stuff with. And one of the reasons is, I want to still live every day like a normal person my age would. If I told all my friends and other people in my life about this or what I felt, I worry that they'd ask me more often 'How are you feeling?' and while I appreciate the gesture so much, I don't need to be reminded that I'm sick or that I'm not normal. School is where I go to be like every normal college kid. So I try not to tell people there what I'm going through. I mean if they ask, I'll tell them. But I won't go into great detail and I will most certainly not cry either. Because school is where I can go and do things like a normal person my age would. I don't want that to change. I don't want my friends or my teachers to see me any differently. I just want to enjoy college and be one of the students in the class. 

Hope and Love,

Becca 

How Do You Educate Others While Still Enjoying Yourself?

I am an open book, about pretty much anything in my life; especially with my health. You wanna ask me a question about it? I'll gladly answer, as long as you ask it in a way that is not rude, disrespectful or inappropriate. But I've noticed that not everyone is that way. 

Yesterday when I walked into class, I took a seat beside my classmate and friend who is deaf. He and his interpreter were talking about this guy who kept asking questions about why he was deaf and about being deaf while at a party. My friend said that he eventually snapped at him and told him that he wasn't in the mood to answer questions because that's not why he came to a party. The interpreter and my friend asked me what I would've done in that situation. I simply replied with, "I would answer his questions." 

In which I got a response from my friend, "So if you were at a party, drinking and just having a good time, you'd be okay with people asking you questions about your scar?" 

I told him yeah and that it happens quite often honestly. I don't hide my scar, so and I am fully aware of the fact that I am going to get questions about it. Questions I am willing to answer. I did say though, that I answer the questions all similarly. I tell people when they ask, that I've had open heart surgery because I was born with a heart defect. My answer typical suffices their curiosity and they don't feel the need to ask more. However, some people do ask me about the defects that I have, what medications I'm on and other things. And at that point, if we are in a social setting and I don't want to answer, I'll nicely offer to meet up with them some other time to talk about it. That way if they truly want to learn about it and they aren't just being nosy or just don't know what else to talk about with me - it puts the responsibility on them to come to me at a later date. 

I pointed out that I believe it is my responsibility as a CHD patient and fighter that I help raise awareness. Now do I like that sometimes my scar is the only thing that people notice about me? No. But part of education and raising awareness about an illness or a disability, is showing the people who ask these questions, that your illness and disability does not define you and it is not the only aspect of your life. I also think it is important to remember that if you snap at someone or make snide remarks about their questions, you may turn them off from wanting to learn more about the disease or disability. And that will never help the cause. That will never help educate. It will never help find a cure. 

So while I understand that it gets old answering the same questions, it's part of our life. Whether we like it or not. We just have to make the best of it. I can say though, that the majority of people I have come across, once I answer their question and explain to them what a heart defect is, they are happy with the answer and then we continue on with the original activity or topic. Very rarely do I get people in social settings that continue on with questions - especially personal ones. But my advice that if that does happen to you - just nicely tell them that you'd love to answer their questions sometime later when you have more time and that if they want you can meet up sometime to answer them. It leaves the door open for you to educate them if they want to, you haven't been rude and possibly turned someone off to learning more and you've educated them already in the fact that there is more to you than just talking about your illness or disability. 

Hope and Love,

Becca 

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 

It's Been A While...

Hey guys,

I wanted to apologize for not posting in a few days. My health has not been good, at all. As some of you know, I was having some irregular heart beats that my pacemaker/ICD were not "trained" to pick up on but I could feel them. So I have had to wear an Event Monitor (a heart monitor that only records when you tell it to do so) and I have to wear it for a whole month. 

On top of that, my asthma has been giving me problems as well. My oxygen is in the low 80's. I don't want to gross any of my readers out, but I can say that I normally do not cough up any "junk" as my family and I call it, but with this round of asthma problems I've been having, I have started to and the color indicates an infection of some kind. Along with that, the doctors believe I strep throat. You can imagine how amazing I feel right now!

I have started antibiotics along with some steroids to help clear my lungs out. I am hoping to feel better by next week because I cannot afford to miss any more school. I am so close to this semester being over and I cannot drop out of my classes when I've made it this far. Especially since this is the best year I've had in math since like 3rd grade! Okay freshman year of high school went well too. But you get the idea. 

I appreciate all of your support and prayers. Thanks so much guys and I promise to get lots of rest so I can get back on and update this blog as frequently as I used to! 

Love you all,

Becca