Patient Diary -- Crystal Clark
Saturday, November 1 2003
just another day
It's been so nice out lately I love it! The weather is perfect...not too hot, not too cold. I really didn't do much today. I sat around and watched tv until about 3 or so then Amanda came over and we played Mario Party. By the time we got done playing Austin was here and slowly the rest of them showed up. We watched One Flew Over The Cuckoo's Nest. That is such a great movie. Austin's mom made Hulishki. I have been so hungry for that for about 3 weeks, so I loved it! Then just about an hour ago we went to Sheetz. Yummy. Such a good food day :) Now that everyone is gone now though, I look around and see the dishes and empty soda bottles and don't even want to think about cleaning. Tomarrow my mom will be here and she's going to help me clean and get ready for the my new couch so I should go and get some sleep now.....
*goodnight*
Monday, November 3 2003
Finding out a little more about myself
Please bear with me...I had written for about a good 20 minutes only for it to not send right and I lost everything I had written. I guess that's the trouble with computers.... *sigh*
I wrote all about myself, my medical history, my friends and family, and even my pride and joy....my cat, Georgia. After all the writing, It made me appreciate everyone around me. I had realized how understanding and supportive they all are and how much they really help me everyday. I understand how good it is to have a diary like this. As you sit and reflect on your life or day, as you write
you can see your life in a whole different perspective. I know as I wrote I saw so much good in the people around me that I don't realize and maybe take for granted sometimes day to day.
To sum up a little of what I wrote...I have great family and friends around me. My mom, dad, sister, friends, my b/f who I have been with for a little over 4 years now. To try and sum up my medical history is a little bit harder because doctors and tests and surgrey's are something I have been accustomed to for as long as I can remember. I had open heart surgrey when I was 2years old because I was born with a missing pulmonary heart valve, they replaced it when I was 12years old so that was my 2nd open heart surgery. I had scoliosis and so I had back surgrey where they put 2 rods in my back to straighten my back when I was 14years old. I always had known I'd most likely need a heart transplant, and when I was a senior in high school I noticed I was
becoming more out of breath and it was harder for me to walk without getting tired. I had a heart cath (which to me was nothing out of the ordinary, because I had gotten them every few years all growing up) and when they did my heart cath they said I had severe pulmonary hypertension, and they put me on coumadin, lasix, and lanoxin. I then went out to Pittsburg where I was put on a transplant list. So I have been on the waiting list for a heart/double lung transplant for about 3 years plus now. I recently was put on Tracleer and for the most part health wise I am feeling good. I get tired when I walk and if I am cleaning and I have to stop and rest to catch my breath every now and then. But overall I feel good.
I don't feel sorry for myself in any way at all. I may be naieve, but I look at everything I have gone through and will always live with, but I think I am so lucky. If someone told me that they could change one thing about my life and asked me what it would be...it wouldn't be my health. Everything I have gone through has made me the person I am, and I wouldn't change that one bit. I am glad it is me having to go through all the doctor visits and tests and surgrey's and all,
rather than someone else. I feel like better me than someone who maybe wouldn't be able to handle it or deal with it as I can. I truely am lucky to have everything that I do and everyone who is around me because they are all helpful and understanding.
I hope you have learned a little bit about me. I know as I wrote I learned a little bit more about myself. :) Thanks for listening...
Tuesday, November 4 2003
new couch day
I got a new sectional couch today. My apartment no longer looks like a dorm room. It's now transformed into a cozy home-like state. I absolutly LOVE it! I must have been so excited about it, I ended up getting a little nautious feeling. I hate when excitedness turns into feeling sick. They had the hardest time getting it in here though. Anyway...... They had to carry the biggest section up the 6 flights of steps because it wouldn't fit in the elevator. Boy, I can't even imagine trying to walk up 6 flights of stairs, yet alone, carry a sofa up that many steps. I really kinda felt bad for them..but on the other hand it is a part of there job. Still though, I gave them extra money for carrying it up and all. They really deserved it. Tomarrow is going to be such a busy day. I have 2 dr. appointments.
First I have to go get my Tracleer bloodwork and then I have to go and see an orthopedic specialist for the scooter. I still don't understand why they won't take my cardiologist referral as a "specialist" for that. The system always has a way of ending up making things difficult. Oh well...Ya just gotta roll with it. At least now I'll be able to come home and sit on my new cozy couch. Yay.....
Friday, November 7 2003
I don't understand
I am sitting here thinking that I never know what to really write in when I sit down to get my thoughts out. I don't really talk about my PH or my heart condition all that much. I just live with it...it's a part of who I am day to day, so I never really think about it too much.
I was talking about that with my dad the other day. He was asking saying how he get s sick of hearing people who don't "really" have anything wrong with them complain. Then when it comes to people that really have medical problems, like me...I don't ever complain about it. I thought about it, and I notice that alot myself. You see people day to day and all they have to say is something negative about their life or they get a headache and act like they need to be in bed for 2 days. Sometimes I really don't get people like that because if I wake up and the worst thing is that I get a headache, I feel my day was still pretty darn good.
I am not trying to say that I NEVER complain, because there are days when I really don't feel good and I am the whinest person. What I just don't get though are the people who dwell on just a headache, or something silly. I have PH and I have gone through 2 open heart surgreys and back surgrey and I am only 22 years old. And the thing is I don't ever really complain about it. I don't feel sorry for myself in any way at all. There are times when it seems like all I do is go from one dr. appointment to the next, but that's life. You go because you have to and I don't complain about it. You just deal with it. There are times I get light headed and dizzy and sometimes my heart will just all of the sudden race for a minute for no apparent reason, but no one really knows because I just sit there like nothing is wrong and let it pass. I take care of myself the best way I know how and that's all I can do. When I see someone complaining about every little thing that's going wrong with them, I wonder how they can live life like that. How can they just focus on every negative thing like that? My dad only is living with one lung and he doesn't ever complain about anything physically. To see him you couldn't ever guess he only had one lung because he does just as much as anyone else.
I think even though I have these heart problems..I was born with them so I don't know how it feels to be "normal". I don't know what it's like to be able to play sports or exercise without having to take long breaks and pace myself so I don't get tired.
The kind of person I am is that I laugh everyday. I love just being silly and joking around. I really do believe that laughter can be the best medicine. I don't like focusing on negative things because why dwell on things you can change. I can't change the fact that I have PH and heart problems, I can just accept the fact that it's something I have and live my life. I feel "normal" to myself. If I could wake up one day and not have to worry about dr.'s ever again and be totall healthy I wouldn't know how to react.
I guess what I am just trying to say to everyone is try not to focus on what's wrong rather than what's good. When I do think about my heart problems, the way I see it is I'd rather have this than something worse. I know I can deal with this. I think that God only gives us what he knows we can handle, even though sometimes we might not feel like we can. And honestly I am glad that it's me and not someone else. And I think that's a pretty good way to think and live my life.
Saturday, November 15 2003
Sudden changes
Well, I am realizing that I can be somewhat forgetful lately. I think in my head "I need to do ...." and then right when I go to do it, I get sidetraked and totally forget about it. My mom must have told me about 5 times on friday to send her this one webpage and everytime I got on the internet, I would totally forget the reason I came on figure I'll check my mail or play a game and then disconnect and forget to send the page. Also, that's why I haven't written in here for quite a few days. I'll be thinking "I should go write in the diary" and then 2 mintues later I forgot and never do it. But here I am finally. Yay me! haha...
I had my one month follow up appt. for the Tracleer and it went good. I have to just go for an echo Dec. 11th. I asked them why it seems like I haven't noticed ANY change in my activity level and they said it's becasue of the low dose I am taking. They said I probally wouldn't be able to notice any increse unless I increased the dose a little more. So I decided to take their advice and increase it a little. Alot of people have been saying that I am looking better though. I think so too, so that's good. I was afraid that if I went back to the increased dose I was on then I would get sick again, but then I thought about and since I've been on the lower dose maybe my body has been able to get used to it...so far so good.
Hmm, I am trying to think about what else I wanted to write about. I am so sick of having to stop and take a break when I am walking. I sometimes just push myself to keep going because I hate telling people to stop and wait so I can catch my breath. I just hate not being able to keep up. I know no one minds having to stop and wait for a little..but it bothers me. I feel like I slow everyone down sometimes. I hate cleaning too cause for some reason when I bend over it tires me out. I dunno....I guess sometimes you just need to vent...I contradict myself alot I guess. Sometimes I feel like I can just be "normal" and take one whatever without a care...then other days I feel like I don't even want to do anything except just hang out, watch tv or do something that requires little energy. Tonight we are going to the movies to see the new Elf movie and I am excited. I am hoping I won't get too tired walking from the car and into the theater, but i'll deal with it.....If I have to I'll just say the classic words I hate to say... "wait up a minute".......
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