The Emotional Roller Coaster We Go Through - Getting Bad News

It's been a few weeks since we heard from HUP concerning my transplant and since then, I've been trying to wrap my brain around it all. The hospital decided that I was too high risk for the transplant and denied me. Part of living with a chronic and/or terminal illness is that you are bound to get bad news from the doctors. But you never get used to it and each time you get bad news, you have to go through the healing and coping process all over again. 

At this point, I'm still unsure of how to feel about not getting the transplant. Part of me is relieved that I don't have to make that decision. I'm glad I won't be spending a minimum of three years across the country away from my family and friends. I'm glad that I won't get another scar or have to learn a whole new medicine regimen. 

But then there is a part of me that is mad. I'm mad that this is one more decision I can't make for myself. One more thing I don't have control over. I'm scared because this means once I start to get sick again, there is very little they could do to get me better again. All my life I was told 'someday you'll get a transplant.' and I, without realizing it, put the transplant on a pedestal. Something to look forward to. Something that would fix all of this. I know now that it's not a quick fix all and that there are still complications that would come from the surgery. But there was still always that little bit of hope that accompanied the idea of a transplant. But now that hope is gone... and I just don't know what to do or how to feel. I'm in limbo. 

For a year and a half to about two years, my family and I have been in limbo. Moving from one center to another, waiting to see what test results said, waiting to hear if the doctors and hospitals would take me on. We never really got concrete answers and have put our lives on hold all because of this. And now it's over and I'm not sure what to do. I'm relieved it's over... but I'm also scared because now that we have a 'no' answer, I have to learn how to deal and cope with getting an answer I'm not 100% pleased with. (Although to be fair, I would've been 100% pleased with the yes answer either because of what that entails). 

 It's hard to express your feelings when you're feeling them all at once and aren't sure which one to focus on. I haven't really talked about my feelings on this matter to many people because quite honestly, I'm not sure how I feel about it to begin with. It's amazing how one thing can evoke the whole spectrum of emotions, from relieved to being terrified at the same time.  I want to say thank you to all the people who have kept in touch with me during all of this and been there for me. Your support and love as always, means so much to me. 

Hope and Love,

Becca 

The Waiting Game... Again

About two weeks ago I  got a blood draw to see just how many antibodies I had. Well we found out that my PRA (panel reactive antibody) is at ”Transplanting organs into recipients who are “sensitized” to the organs significantly increases the risk of rejection, resulting in higher immunosuppressant requirement and shorter transplant survival. People with high PRA therefore spend longer waiting for an organ to which they have no pre-existing antibodies.” Transplant centers and surgeons do not like transplant patients who have lots of antibodies because of the risks of rejection an how much harder it is to find an organ. Because of this - the transplant team had to meet again today to discuss whether or not I'm still a good candidate. The score of PRA is expressed as a percentage between 0% and 100%. Mine is 90%.

I have one thing that could help my scenario and that is the fact that there is treatment to help bring down the number. But its up to the doctors on if they think that would even be worth trying with me. If they don't think it'll do anything, then they may not decide to transplant me. It's 4 o'clock here which means it's 7 in Pittsburgh - and more than likely everyone has gone home for the night... and I won't get an answer tonight about their decision. It's going to be another sleepless night, tossing and turning - worrying that they'll reject me. I'm hoping we get an answer tomorrow, but knowing how slow they have been to get back with us in the past, I have a feeling I'll be waiting and worrying for a bit longer. Thank you for all the love and support during all of this!

Hope and Love,
Becca

One More Kick In The Gut

I want to apologize for not posting an update sooner, but every time I opened up my computer and started to type up about my latest doctor appointment I couldn't see the screen through my tears. If you follow me on Twitter, Facebook or read my blog update before this one, you know that the hospital called Lucille Packard that had once said they could do my heart-lung transplant that I would eventually need has gotten a new surgeon who doesn't think he can perform the surgery.

So the doctors asked the adult side (Stanford) to see if they thought they could perform the surgery. I went up last Wednesday, had an ECHO, EKG, Pacemaker Check along with a 6 Minute Walk. Things all looked good, they looked the same and I had even lost weight so my low salt diet is working well. But there was something going on. I could feel it. Normally after the arrhythmia discussion and pacemaker stuff is all taken care of, my EP doctor and my EP nurse leave to go to other patients and leave my cardiologist there to talk about other things. But everyone stayed in the room and I knew, I just knew whatever they were about to tell me wasn't going to be good. 

When I asked my cardilogist if they had heard back from the adult side if they could do my transplant when that time came, he just shook his head. I asked even though I knew the answer, "No you haven't heard from them or no they can't do it?" He didn't need to answer, I could tell. My heart caught in my throat and my stomach suddenly felt empty. My doctors have only seen me cry twice in the 7 years that they've known me. Whenever they give me bad news, I've been able to hold it together and I cry once I get back in the car or wait until I'm at home. But I couldn't hold them in this time. Another kick in the gut and my eyes started to tear up. My EP doctor handed me a tissue box and rubbed at my back while my cardiologist told me that this was not a set back they had been expecting and that he had even had a few choice words for them. Have to admit, knowing my doctor cursed for me made me smile because honestly, I wanted to curse too. I wanted to do a lot of things, kick something, scream and yell about how it wasn't fair. But instead I listened to him talk about sending out my records to at least two other centers in the US that could possibly do my transplant when the time comes. It'll be a week on Wednesday since that meeting with my doctors and we haven't heard back yet... I'm hoping and keeping my fingers cross that we get some good news.

If anything good has come from this it's a few things. I learned who in my life really cares about me. When I posted about this on Facebook, there were certain people I expected to hear from that never even so much as sent me a text or posted a comment letting me know that they were thinking about me.  And to be completely honest that made this situation hurt even more. People that I considered friends or people that I thought cared about me not even taking a second out of their day to send me a text. That's what hurt. In my time of need, the people I expected to be there, some of them weren't. But then there were people who posted and even sent me private messages letting me know that they cared that I didn't even expect to hear from. It was so touching to open my Facebook and see messages from people I haven't spoken to in years telling me that they are thinking about me, praying for me and that they are here for me if I need them. So to those of you who have supported me and continue to support me, thank you.

The other good thing that could come from this is that I've never been to St. Louis or Texas, so if either of them accept me as a patient, that'll be another place in the US that I get to visit. Just hope that whoever agrees to take me my insurance will not fight us on it.

Thank you to all of you who have sent me messages, texts and supported me. It means so much to me and I appreciate it more than you could ever imagine. Your prayers and support mean the world to me, thank you for everything!

Hope and Love,
Becca 

Quick Update

Hi everyone,

I just wanted to give you guys a quick update about the heart cath and pacemaker replacement I got a few weeks ago. During the cath, I had a horrible asthma attack and they had to give me a bunch of asthma medications while I was still sedated. The doctors took a look at some of the pressures in my heart and they aren't too happy about them. They are hoping though that it was just because I had eaten a bunch of salt the night before (I splurged! Haha.) and because of the difficulty with my asthma. I have to go and get a CT scan in a few weeks to see if the numbers have gotten any better since than. I am back on my low salt diet and I am really monitoring my asthma closely now. I just hope that the numbers weren't "real" as the doctors liked to say. I'd really appreciate your thoughts during this time. If the numbers are "real" and my heart is getting worse, than the next step is to go back and talk with the transplant doctor and I am not ready for that step. Not ready at all. I like to think that I handle this kind of stuff pretty well, but when it comes to the idea of getting a transplant, I don't know how to deal with it at all. So I'd love to be able to put it off as long as possible. I want to thank you guys for being there for me through all of this, I really appreciate it.

Hope and Love,
Becca

People in Need of Transplants are Moochers?

Hi everyone,

 I know I have not written in a while, I have been having some problems with my stomach. We are not sure what is wrong with my stomach, but I am horrific pains at times. I did not go to school pretty much all week except for yesterday and today for just half the day. 

I would like to share a story with you that happened during my 4th hour economics class yesterday. I can’t remember how we got onto the subject, but a girl in my class and I were talking. I mentioned how our teacher in that class was a democrat. The girl, we will call her ‘Money Is More Important,’ or MIMI, turned to me and said: 

“Democrats are stupid.” 
Which I responded;“Are you serious?”
“Yea, that’s what my dad taught me. From the moment I was little. Democrats are stupid.”
I responded with: “Funny you should say that when it was a Republican who decided that 100 people’s lives weren’t important and cut the budget for transplants.”
“Well we are in an economic crisis.” She says nonchalantly with a shrug of her shoulders.
“So you are okay with telling a 21 year old who needs a lung transplant that she isn’t worth saving? You’re okay with telling a woman whose life just started that she is going to die?”
“What do you mean her life just started? She is 21. What has she been doing all these years?”
“It’s a metaphor, saying how young the person is to be dying. And what has she been doing all these years? She’s been fighting to live.” I answered her question. Before she responded I added in; “Or how about a five year old. You want to go up and tell a five year old ‘Sorry, we aren’t going to give you a transplant. You want to do that?” I asked.
“No. But that’s not my job.”
“So as long as you don’t see the sadness and fear in those people’s eyes, you are okay with letting them die?” I asked her.
“Look, if its your turn to die; then you gotta let it happen.” She responded.
“It’s easy for you to say that because you are healthy and are not fighting a terminal disease. I have found that people who have never fought to live don’t understand the fear of death because you have never had to face it for yourself.”
“I just don’t think people should mooch off of others to keep them alive. Those are that person’s organs.”
That one really hit home. It is one thing to have an opinion about the way we pay for health care, it is a whole different thing to call hard working people who through no fault of their own either got sick or born sick moochers.“Are you calling me a moocher?” I asked her.
”Why do you have to take everything so personally?”
“Because I am one of those people who need transplants. I did not ask to be born terminally ill. I did not ask to need new organs. And plus its not mooching since the people agreed to donate their organs and save lives.” The girl did not say anything but shrug.The bell rang then and I left.

 My friend who was also in the class gave me some encouraging words as we walked to lunch. “Becca, people at this school are selfish, ignorant and stupid. They don’t understand what its like to have a difficult life. I have not lived your life, but I know from my own struggles what its like to have a hard life and I understand where you are coming from. I believe in karma Becca and I believe that some of these people some day will get sick and finally realize just what you are saying. They don’t care endless it happens to them.” I told him how much I appreciate him being so understanding and we shared a hug. While MIMI’s words hurt and disturb me, my friend restored my faith in the fact that there are people out there who do understand and care about others out there; not just themselves.

As I’ve said before, it is not about what party you are in. It is about human life and valuing it. It is not a conservative or liberal thing. It is about human life.

 Love,
 Becca

Future???

Hi Everyone,

The 'What is my future going to be like?' is a question that has been coming to my mind lately. Partially because now that I am 18 years old and just a few months away from graduating high school; people have been asking me about my plans for college and the rest of my life. It's a scary thought, for any young adult; having to think of their future and making decisions about it. But for me, as a chronically ill teen it seems even tougher.

What will I do about insurance? What about if I have to go on my parent's insurance and their premiums sky rocket? Will they have to sell their home? Will we have to move out of state just to get better insurance? Will my mom have to get a job? What will happen to my dad's small business?

What will I do about covering for a heart-lung transplant? In the state of Arizona, once you turn 21, the goverment will not pay for the transplant. A lot of people just ask 'Why not get it now?' the answer is, my quality of life is too good. People have the misconception that if you need a transplant, you should get it right away. They also believe it fixes everything. It doesn't. Transplants are tricky things. Here are some things you should know about heart-lung transplants:

• You don't want to get it until you ABSOLOUTELY have to! (this goes for all transplants.)

The reason you wait as long as possble are:

• According to my transplant doctor in 2007 - 2008, less than 50% of patients are alive in 5 years after reciving a heart-lung transplant. - I want to wait until 5 years is EXTRA time to my life. Right now, 5 years is NOT extra time because I am doing so well. I have a life, when I stop having a life because of my heart and lungs is a time when we talk about transplants. The doctors said that they go off numbers but also how I as a patient feel. An example they gave me:
• My pressures (in my lungs; not high blood pressure.) could be 100, but my quality of life could be WONDERFUL, so despite the large numbers; the transplant would not be needed. But if my pressures were 80, but my quality of life was horrible, then we would start talking about transplants. It comes down to quality of life, not just numbers and science.

• Another reason is medically technologoy. The longer I wait, the more research is done into transplants. With more research comes better medicines, better medicines means less chances of infections and rejections; meaning my chances of living past the 5 year mark becomes better.

But the main reason to wait is really quality of life. My life is too good to chance it with a transplant that would cut my life down to less than 5 years when at this point in my life, there is no time limit!

Some other concerns with my life as I become older:
What will I do about having money while being a full time student? I know that I would not be able to work and go to school without jeopardizing my health. Heck, going to high school and being a full time pateint is tough for me to do!

What about if I get sick and have to drop out of college? Will that happen to me? If so, can I pick up in college where I left off? Or will I have to repeat?

Will I ever find a place that will hire me even though of my pre-existing condition? I know being a nurse at a hospital should have good health insurance. But usually that hospital only lets you go to certain other hospitals (if not itself), and what if those hospitals aren't the ones that are best for me and what I need done?

For the longest time (actually, all my life.) I depended on my mom and dad, as do most kids living with a Chronic Illness. For the longest time I only got scared when I went into the hospital. But now as I grow older, I become scared about more than that. I am starting to share the burden of the insurance issue as the major problem.

But also just trying to figure out my health. Right now my Thyroid is going crazy, and my pottasium is really low. I am exhausted 24/7, going to school has started to become a problem for me. I sleep almost all day on the weekends and even then I am still sluggish and tired. We are hoping it's just because of the Thyroid and once I get some medicine it will help. Keep your fingers crossed for me!

If any of you who are reading this are doctors to pediatrics or young adults, please take this to heart. We have a lot going on in our lives. We are trying to live a normal life while we have the burden of our health and sadly, sometimes insurance problems on our shoulders. Meanwhile we worry about grades, finding a college, trying to decide if we can work while we go to school and also trying to have a "normal" life. Life as a Chornically Ill Teen and Young Adult is not what people think it is. It is a sad, miraculous, triumphant, dis-heartening and frightning life that we live... please try to be understanding.

Love and Hope,
Becca