Kicked in The Gut

Have you ever had one of those moments where it feels like you've been kicked in the gut? When you get some news that you weren't expecting at all and it isn't good news either, and it feels like the wind was kicked out of you? I've had that feeling about three times in my life, and the third time it happened was Tuesday night at the dinner table. 

My mom and dad had been outside on the phone with a nurse practitioner from Lucille Packard, she helps us set up appointments and relays messages between us and my doctors up there. When my parents came back inside and sat down to eat with all of us at the dinner table, I asked them if everything was okay. Mom started to explain how they are trying to work out a time for me to go up and see my doctors. But there was something in her voice, a smell tremble that lets me know she's close to crying or that she heard something she didn't want to hear. So I asked, "Anything else?" That's when life kicked me in the gut. 

There is a new transplant surgeon up at Lucille Packard and after reviewing my file, he decided that he did not think he could handle a complicated case like myself. He suggested that I try the adult side, which is Stanford. Since Freshman year of high school I was told that I'd get my transplant at Lucille Packard. I was comfortable with them. I trust them. I know them. And the idea of having to go anywhere else made me break down in cry, right at the dinner table. 

It's not just the idea of moving hospitals though that scares me. I've gone to 5 different hospitals within my life time to get different procedures done. I can suck it up and handle change. But the things that popped right into my head after my mom told me this were these things: 

• Will the insurance let me go there? We've been able to go to Lucille Packard because we say I need a pediatric cardiologist who specializes in PH. We've also argued the "Continuity of Care" angle, meaning I've been going for a long time, so I should be able to go. But now that one part of my health might be taken care of by an adult doctor, would the insurance try and make me stay here and see their adult doctors, even though they aren't qualified to take care of me? 
• If I'm so complicated that even one of the best hospitals for patients like me can't handle me, will Stanford be able to? And if they can't, where do we go after that? And if have to look at a hospital besides Stanford, the insurance question comes up again. 
• What if we don't find any surgeons that feel they are good enough to do my transplant? What do we do then? 

As I sat there sobbing with my head in my hands, the dinner table grew silent. I have never been at a family dinner where it was completely silent before... and I felt bad that I was cause of that silence. I felt guilty. Like it was my fault that I brought everyone's mood down. I felt guilty that my family has to sit here and suffer with me. The only thing that I could think of that was positive to say was this, "Well at least he had the guts to admit it. Instead of doing the surgery on me and something going wrong." My mom nodded and said that was a good point that she hadn't thought about before. 

Conversations started to resume again and dinner went back to normal, or close to it at least, and for the first time in a long time, I was quiet during dinner. I barely touched my food, suddenly not feeling very hungry and when dinner was over, I crawled into my bed and I sobbed. I cried loudly, almost screaming even. Screaming in frustration, in sadness, in fear... and then came the silent tears. The kind of tears that make your whole body shake as you just sit, hugging your knees to your chest. 

My dad knocked on my door first and took a seat behind me on my bed, rubbing my shoulders, knowing that always helped to calm me down. He asked if I wanted to go get some frozen yogurt and I couldn't help but laugh a bit. He knows me so well. Mom walked in a little bit after that and sat in front of me, patting my knee and holding my hand. They reminded me that at least I don't need the transplant now. My quality of life is too good to be put on the list at this point, so we have time to find someone who can handle me. 

And to be honest, the fact that my health is doing as well as it is now is the only positive thing about this situation I can hold to right now to help reassure myself that it's going to be okay. The moment my health starts to go downhill and the topic of transplant comes up, I'm going to be an even bigger mess than I already am about this whole thing. 

That kicked in the gut feeling is still here, even a few days after the news came. What's nice about having a large family is that someone is almost always over to help keep me distracted. But at night, that's when I lie awake, worried that this new doctor won't be able to handle me, or that the insurance is going to become an even bigger problem. At night, that's when I cry. 

I want to thank you guys for all the love and support, and I'm sorry that this post isn't the uplifting and happy-go-lucky ones you're used to. I just needed to share this. I needed to get it all out. And I wanted other people to know who might be going through similar situations, you're not alone. It's scary. It's hard. It sucks. But we can do it. At times it might feel like we can't or that we don't want to. But we'll get through it. 

Hope and Love,

Becca

The Sibling Series - Explaining Medication

A few months ago, a mom asked me on Twitter to write about strategies or tips for raising siblings of kids with CHD. I thought that this several part series could also be applied to siblings of a child with any sort of special needs. This is the second part in this series and it focuses on how to explain medications that your child has to take to their siblings. I've broken my suggestions down according to age range and what I think would be appropriate and helpful for certain ages. 

Infants 

• They are not yet at the age where they really understand what is going on. However if your child has to wear oxygen, a mask for SVN treatments or has to wear a permnant IV for any reason, they can still get frightened by this. 
• If the baby seems to cry or get scared at the sight of things your other child has to wear, I would suggest you have the older sibling smile and reassure their sibling as they put on their mask, oxygen, change their IV dressing etc. 
• If you remain calm and show that it doesn't worry you, it may help as well. 
• Obviously the baby will not know what is going on at first, but the goal is to slowly get them used to what their sibling has to do, that way it's not so shocking or life changing for them as they get older and are able to understand. For example, my little sister has always seen me put my oxygen on at night, at first she was scared of the sight but as she got used to seeing me with it and I continued to reassure her that it didn't hurt, she doesn't even notice now that I'm wearing it. 

Toddlers 

• If your child is anything like my nephews and nieces, they will try to get into anything and everything. Which means, their curiosity may make them want to get into their siblings medications. 
• It's important (as I'm sure you already know) to let the toddlers know that the medication isn't for them without making them think it is scary. 
• What my family has done is let them watch me take my medication, or watch me put my SVN mask on and my oxygen on but every time they reach for it, we put their hand down and tell them that it is not for them. This way it lets them know that they cannot touch it, but it's not something to be scared of. 
• There may be machines that the toddler can touch though. Like my nephew who is 19 months old now is allowed to turn my SVN machine off and on, and in the morning my mom lets him come in my room and sit in my lap as I take it. 
• However there are boundaries. He loves the sound that it makes and he loves the way it feels on his hand whenever it is on, but he is not allowed to touch it if I am not in the room. We keep my door closed whenever I am not in the room, that way he doesn't run in and try to play with it. He is also not allowed to pick up the machine either. Simple rules that let him explore some aspect of my medication without harming him or my machine. 

Little Kids (Age 4 to 9) 

I have a lot of nieces and a little sister, and at some point they showed interest in my medication, especially the pills that I take. If I saw someone down eleven pills at once, I would be curious too! My family and I have come up with a few things we do and let the kids do once they reach a certain age. 

• I will pour the medication that I am supposed to take into my hand and I let them see it. I will usually bend down or crouch down to their level and I let them look at the pills in my hand.
• Before I do this though I repeat several times that they are not allowed to touch the medication. Even as I crouch down, I continue to tell them not to touch them. They can point to a pill but they cannot touch if I see them reaching for one, I stand up and tell them no. 
• I have a weekly case that I put my medication into. I take medication three times throughout the day, morning, afternoon and nighttime. And at the end of the week, I have to refill this. I will sit at the table and refill my pills and I will let the kids sit across or next to me when I do this. There are rules though.
• They are not allowed to touch the bottles. Since I keep the bottles in a certain order so I know which ones I've put in already and which ones I haven't, they are not allowed to move them or touch them. 
• They cannot touch the pills. 
• They are allowed though to close the little tabs on my pill holder once I have put every pill inside of that container. I tell them that they have to wait for me to tell them it's okay, and then they can close it for me. I do not let them re-open it though because the case is a little fussy and if you pull to hard, the medication tends to go flying. 
• I found that by letting them have a small job or role in helping me with my medication, it lets them see that it isn't something to be scared of. I've also noticed that they love having accomplished something and helped someone as well. My niece would tell everyone in the house afterwards about how she helped me with my medication. 
• When they see the medication, they may ask what does it do? Use simple terms when answering. I'm not going to tell my four year old niece that one of my medications helps open up the airways in my lungs because she'll have no idea what I'm talking about. So I just tell her, "It helps me to breath better." Short, sweet and to the point. 
• Whatever you do, don't tell them about the possible side effects. We want them to know that this is helping their sibling. Plus they may not even understand that they are just possible side effects, they may think that it will happen and that can scare the kid. 
• Demonstrate the medication if you can. When my niece and little sister got curious about my inhalers and my SVN machine, I showed them and let them watch me put the medicine in, put the mask on and inhale. I showed them how I connected the asthma container to the chamber, pressed down and inhaled. If your child has a machine or a medication that they can demonstrate on to show that it isn't scary, have them do that. 

Tweens (Age 10 to 12) 

At this stage, my nieces and my little sister weren't all that interested in my medication. Which is actually in my opinion, a good thing. They stopped asking to help my refill my pills and they stopped asking to look at my pills, which means they are used to this stuff. It is the norm and they aren't bothered by it. This is all good. The goal is to make your child's illness not be the main thing about them, so if their siblings aren't asking questions or don't seem curious about their medicine, that's good. One of my nieces is ten and she is no longer interested in my medication, so I don't bring it up and I don't draw attention to the fact that I am taking my medication. Because I answered questions, let them see my medicine and made it seem like it wasn't such a big deal, they don't view me as my heart defect and lung disease. They view me as Becca, their aunt and that's what I wanted. 

• If they are still curious, repeat the steps that I talked about above for them. 

Teens to Young Adults (Age 13 to 20 or so) 

This age range can be a little tough. While they may not show an interest in the medication, they will be aware of medication changes and stuff like that. The more aware they are, the more worried they may become. For example, one of my medications caused me to have Thyroid problems and I had to go see a doctor for it. My sisters who are older were told about my doctor appointment by my parents and of course they started to worry. With one medication I am on, it could effect my liver and I get a monthly blood test to check that, so there is some worry there. The older the siblings become, the more aware they become and the more they understand just what is happening to their loved one. Here are some tips that can help you reassure them and ease their worry. 

• Don't hide things from them. It will only come back to bite you in the end. 
• However depending on the age, some details such as percentages and the risks might want to be tamed down a bit. What you tell a 13 year old is going to be different than what you tell a 19 year old. 
• Let them know that you and the doctors are working hard to figure out solutions, new medications and treatment options if something does go wrong. 
• If the patient gets routine blood work or other tests like I do, to make sure nothing is wrong, don't make a big deal out of the tests. It's routine. 
• I am very good at knowing my own body. So whenever I get a blood test or any other test to make sure my medication hasn't effected other parts of my body, I remind myself that I am really good at knowing if something is wrong or off. And my mom is also good at being able to tell if I am feeling okay or like my normal self. So my mom and I don't worry because I feel good, and if the patient does that, and you have that same mentality, the siblings will catch onto that and it will be a lot less stressful every time there is a routine test. 

In my 20 years of living with a chronic and terminal illness and explaining it to 12 siblings, 5 nieces and 3 nephews, I have learned that the less scary you make it, the less scared the kids will be in return. Don't make a huge deal out of it and don't make the patient's illness or medication become their identity. I am not Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension to my nieces, nephews and siblings. I'm Becca, the girl who talks a lot, is goofy and just so happens to take some medication. 

Hope and Love,

Becca 

Stand Up To Abercrombie and Fitch

In our country, the topic of bullying is a hot topic. We encourage kids be inclusive and accept everyone for the way they are. But one clothing company obviously hasn't gotten the memo about accepting and loving everyone, despite whether or not they are considered "cool" or not. 

The CEO of Abercrombie and Fitch which is a teen clothing store has come out saying the following about the type of people they want shopping at their stores: “We want to market to cool, good-looking people. We don’t market to anyone other than that.” along with adding in, “A lot of people don’t belong [in our clothes], and they can’t belong.” 

Parents all over the lobe as well as young people are furious over these comments, as they should be.  It is more than upsetting to me, as someone who speaks out against bullying and was bullied when I was younger that someone who has so many resources and really has a great platform to make a change decides to make comments that support being exclusive and looking down at others just because they are different. 

A company should never take the position of being exclusive, especially towards teens/young adults. If Abercrombie doesn't think some people are cool enough or not worthy enough to shop in their stores, then lets send them a message saying they aren't worthy of our support or money by boycotting their business. Lets make a change and send a message that unlike Mr. Mike Jeffries, we are accepting and loving of those who are different in size, weight and look. 

Please take a moment to go to this site and sign a petition. This petition is one for telling A&F to offer clothing options in all sizes. And once you do that, share it on Twitter, Facebook and even e-mail it to friends and family. And until the CEO and the company takes a different stand on this topic, and they offer bigger clothing options, don't shop at their stores. http://www.dosomething.org/petition/abercrombie 

Time to make a change,
Becca 

Some Good News

Sorry it has been a few days since my last post, things got a little crazy at my house! As many of you know, I was having issues with my lungs. I got out of breath easily and my lung function has been down from what it was a year ago or so. So my doctors talked about getting me a CT Scan of my lungs to see if it is Pulmonary Fibrosis or something differently. However, I have been getting better lately. I do not get out of breath as easily as I was, which is really good. I haven't taken my oxygen level lately with my Pulse Ox, (which I probably should do) so I don't know what my numbers are. When I was having trouble though, they were in the 80's and I'm normally between 92 and 95. My Peak Flow Meter (something I blow into to measure lung function based off of how low or high the number I get to is) has been steadily at 250-260 which isn't horrible but it isn't as good as it was back in February. So I will keep an eye on that number, but I'm not too worried about it. My doctors also don't seem as worried as they once were and they have canceled the CT Scan. Personally I think it would've been good to just get it, just in case; because if it is Pulmonary Fibrosis then it is something we need to get working on as soon as possible. But on the other hand, not having to have another test is always nice. 

I know a few weeks ago I wrote on this blog that I was tired of all this uncertainty. It was hard for me because I felt so well but my numbers didn't look so good. Well now my numbers are the same and I'm feeling good, so the doctors have decided that it isn't something to get too worried about. Which is nice. But again, the process of getting worried, getting tests while still being worried, and then looking at the results and getting even more worried and then finally getting answers or reassurance that I'm okay... it's a tiring process and after it a while, it gets annoying. But thankfully, at this time, the process seems to be coming to a close and I don't have to worry about my health getting worse. Thank you all for your prayers and support, I appreciate it so much!

Hope and Love,

Becca 

When Is A Joke Not A Joke Anymore?

It's pretty obvious, when you meet me that I am generally a happy person. People have told me more and more recently how they love my sense of humor and my attitude about life. I've learned through my life that laughter does help you feel better. Which probably explains why I love comedies whether it's a tv show or a movie.

I tend to view laugh with a sense of humor as well. When people make weird comments about my scar (like the lady who thought my scar was a drink I spilt on myself), I usually don't get offended (unless they are purposely trying to be rude) and instead, I laugh it off and find it amusing. I'll go home and I'll tell my family about the newest and weirdest comment. We find humor in some of the things people say. Because if I didn't do that, I could have a chip on my shoulder from all the things people have said to me. But when I laugh it off and get a kick out of the stupid things people say, it makes for great stories! 

Now I know that this is a double edged sword, my sense of humor about my health. When my health comes up for the first time with a new group of people, I make a few jokes about it. Such as 'Oh yeah, my grandma who's in a wheelchair probably runs faster than me.' Or I tell them the story about my mom's cousin who told me I should get a pacemaker on both sides of my chest, so it would be like a breast implant. Funny stories. And I tell them for a reason. I want these people who meet for the first time to feel comfortable with my health, and feel like they can ask questions without me getting sad or depressed about the topic. And another reason being, I don't want them to think that my health controls my life or that my health is all my life revolves around because it doesn't. By using my humor and telling funny stories about my health and things that have been said to me, I've noticed that people don't react as if my health is as big of a deal as they used to when I didn't always use sense of humor for it. 

With that being said though... my health is a big deal to me and my family. I have almost died because of my health, more than once. And while I use laughter to help deal with what I'm going through, it really isn't a laughing matter. Now I understand that I can't have the best of both worlds. I can't laugh about my health one minute and then the next expect people to know that it's not the right time to crack jokes. But more and more lately, it seems as if people make jokes or small comments when the topic isn't even being brought up. I'll be sitting there with some friends and someone will decide to just make a joke about my heart defect or lung disease, and that hadn't even been what we were talking about.

I wonder if maybe people don't know what else to say to me. Or if maybe the lines were not drawn clearly enough? I don't mind jokes when the topic is actually being talked about but when the topic is something entirely different, it seems a bit odd and not very considerate to not only bring it up but crack jokes about it... I'm just not sure how to politely tell people not to make jokes about my health since for so long, I've let it slide and I've laughed it off.

And it also depends on the day and the joke. Some jokes are funny and some just leave me thinking, "Really? You find that funny?" I know that they don't mean any harm by them, which is why I haven't told my friends yet to slow down with them. If you were to make a joke about my health about four months ago, I would've laughed it off and thought it was funny. But now that my health could possibly be getting worse again... that changes things and the jokes about my health become less funny.

I know that I've created some of this confusion as to 'Which joke is okay? And when is it okay to joke?' and I take responsibility for that. I know that my friends are going to have to learn to take cues from me about when its an okay time to joke, and I won't mind helping them learn because I'm sure there are other people out there who try to use laughter to help themselves heal and deal with things but may face some of these issues as well. Thankfully though, when all is said and done, I know that my friends aren't trying to be rude or hurt me with their jokes. Maybe in their own way, they are trying to use humor to help themselves understand what is going on with me. Hopefully, we can all work together though and learn how to go through all of this while laughing but not over stepping any lines.

Hope and Love,
Becca