Canceled Plans Doesn't Mean Canceled Fears

Due to having the stomach flu this past week, the evaluation up in Pittsburgh has been canceled and postponed to a later date. My first reaction was relief. Pittsburgh had suddenly sprung on us that they wanted to do a right heart cath while I was up there and on top of that - they would be going in through a different way and not giving me anesthesia. This was a process I had never had before and it scared me to death. Would I feel it? Would I be able to see it? I was most worried about being aware during the medical procedure if anything were to go wrong. How terrifying would that be? You know your heart is doing something bad but you can't move and your parents are out in the waiting room... It still brings tears to my eyes.

Not only is that a fear of mine, but the fact that I have had the same cath team since I was a 12 years old doing the cath was a big comfort to me. They knew me, they knew how my body reacted and knew how to be prepared for anything and everything I could throw at them. It had taken years for them to earn my trust and I can now say that I full heartedly trust them with my life. I can't say that with Pittsburgh just yet... but I'm supposed to trust them anyways. This isn't an idea that sits comfortably with me. 

While my doctors up in California have decided to get in contact with the ones in Pittsburgh, that has brought me some relief. Maybe they will be able to inform them about my lungs, and about all the risks with me. Maybe then I'll feel safer with the new team, now that they have the knowledge from LPCH with them. But it still isn't LPCH. 

So naturally when the doctor appointments got canceled, I breathed a big sigh of relief. But a few days later, the fear is still back with me. Now I have to wait even longer to see if Pittsburgh will even take me into their program. What happens if we've wasted all of this time for a place that says no in the end? At this point, we think that Pittsburgh might be the last option for a center for my transplant. Will I have to get listed? If so, what number and is it going to be a high enough level where I have to move out there? 

I just want to get this done and over with. I'm emotionally exhausted. I just want an answer so I can deal with whatever the next step is. I feel on edge so much of the time and I'll admit - I'm getting snappy with people. I'm just so tired of waiting. I'm so tired of feeling like I need to be strong for other people when I can't even reassure myself anymore. One of the most common phrases I hear from people is "You're so positive!" and it's true - I usually am. I smile and I deal with my health as things happen. Which I think is why people get surprised or taken aback when I answer their "how are you dealing with this?" question honestly with answers such as, "I'm not dealing with it. I'm not dealing with it well at all." Sometimes I answer it with tears, or I curse and tell them how angry I am. Because right now, I can't be so positive about it and to be honest I don't think I should be expected to be. 

Becca 

Gotta Stay Positive

I am pleased to announce that there hasn't been much activity concerning my health lately. We have made appointments for me to get evaluated the week of the 27th in April up in Pittsburg. May 15th (I believe), I will be headed up to California once more just to touch basis with the team up there and let them know how I am doing. But I can honestly say that health wise - I feel wonderful. My water retention is almost non-existent which is great, my lungs feel clear and I haven't had an irregular heart beat in a few months now.

But there is one thing I am worried about. I personally don't think I need to be listed at this point, I feel too great and my quality of life is getting better and better everyday. But what does worry me is if Pittsburg says they don't think they'd be able to do the transplant. Unfortunately, three hospitals have already said no to me and Pittsburg is kind of a last hope for us. If they say no to me... what do we do then? If they won't take me into their program, where do I go for a transplant when I actually need one? 

I know that as time goes on, medical advances will help to make the statistics better for me. But just how much further down the road will that be? How long will it take for medical advances to improve my statistics so that a hospital will take me on? Because depending on when I start to go downhill - I may not have that time to wait. And that is what scares me about this whole thing, being told that they won't do the transplant on me because I'm too high risk. What do we do then? Are there any other options as far as centers go that we could try next?

Each time my mom talks about it to people, she mentions that if I were to get listed (even low status) I would have to move all the way there. And each time, I have to remind myself that I feel great and think positive thoughts. 'I feel so good, so I won't need to be listed yet.' I keep telling myself and my parents this. If I keep saying it - I just hope it'll be true...

Hope and Love,
Becca 

PHriends and Heart Friends

One of the most important things for someone who is living with an illness of any kind is having a support system. Often times it consists of family and friends, but if you're lucky - you have a support group made of people who are sick like you are. In my life I have CHD Friends and PH Friends (the PH community call them 'PHriends' while CHD friends are called 'Heart friends' ). 

I have had the pleasure of meeting some amazing people over these past 21 years who have either had a Congenital Heart Defect or Pulmonary Hypertension (and at times, both!) like me. What is so beautiful about these communities is the fact that when you meet them - you instantly have a connection. You are instantly family. We all have been there, we understand what it is like to struggle for weeks in the hospital, we understand what it feels like to have IV after IV put in, we understand the frustration of just wanting to feel healthy. 

Some of these friends you make along the way, you don't talk to as often as you would with the friends in your regular social group but what is so special about this group is: no matter how long you go without talking to one another, the moment you need them - they are there for you. When you don't have anyone in your every-day life who can understand what you're going through, they are there. When these friends tell you "Yeah I know how you feel." you know without a doubt that they really do. 

But there is pain and sadness that can come with having friends who are sick like you. You get so close to these people, they become your second family... and then they die. When I was just 11 years old, the first friend I made who had a terminal illness like me, died. No eleven year old should have to grieve the loss of a close friend. But so many of us do, and so many of us have. 

When you are chronically and/or terminal sick like my friends and I and you lose a friend that has fought for life just like you have - you grieve over the loss of a friend but you grieve for their family too. When I have lost a friend, I cry not just for my loss but for their families. I picture my family and how they'd deal with it if it had been me, and I can't help but cry for their parents, siblings, cousins and other family members. How would my family deal? How does any family deal with it? Then you cry for your friend. They had so many plans. They were so young. They could've grown up to be amazing people but life was unfairly taken away from them before they even had a chance to truly live. But then there are tears for yourself. Tears of fear. When they die, it is a sickening reminder that it could've been you. It is a reminder that someday, you are going to be the one people are crying over... and that that day may come a lot sooner than you'd like it to. 

This topic was sadly brought back to my attention last night while scrolling through Facebook only to find that a PHriend of mine had passed away. Angered, saddened and terrified, I ran into my mom's room with tears in my eyes to tell her. I had met this PHriend about six years ago at a PH Conference and although we did not communicate often, there was this wonderful bond between the two of us. 

I've written this post in loving memory of the warriors who have passed too soon. I was lucky enough to have met Sonny, Rebecca, Lauren, Jasmine, Amy, Olivia and Princess Faith before they left us. But to all of those who I never got to meet and to all the families out there who have lost a fighter - please know that they are missed and they are loved. 

Becca 

Small Update for Transplant

A small update when it comes to the transplant, we have an appointment later in April. I also finally figured out that I have been naming the wrong city! For a long time my family and I thought it was Philadelphia but it is actually Pittsburg. On top of that confusion, we were supposed to get the itinerary for the week long doctor appointment last Friday in the mail. It still has not shown up.

We are so used to Lucile Packard being so on the ball. We're able to directly e-mail the PH nurse, Michelle and she gets back to us either that day or the next. We're able to call the doctors, leave a message on their phone and either they or their nurse calls us back within a day or two. But we have not been able to have such easy communication with this hospital and it is so frustrating. 

Perhaps this is merely a problem with the department in charge of appointments that are a little unorganized. I keep hoping that once we meet the doctors and nurses, my family will get actual contact information so they can talk to them directly when we need to. I am hoping that once I meet the transplant team I will be reassured, but as for right now - I'm unsure about whether or not I should trust a hospital that can't even send out a piece of paper telling me what time to show up for my appointment. 

Hope and Love,

Becca