the_alchemyst Posted July 14, 2006 Posted July 14, 2006 . . . Is what I have. I'm sad. They tell me that there is no "cure" for it, and that the things I can do to prolong my life are rather minimal. I'm sad. I'm not even 20 yet. And they said it's "advancing" very fast, so I may very well not be around much longer. I suck.
Outcast Posted July 14, 2006 Posted July 14, 2006 Oh gosh that's awful! I'm SO sorry! Are you a candidate for transplant?
magichands Posted July 14, 2006 Posted July 14, 2006 You most certainly do not suck. But I suppose some of your genes are a bit dodgy. I'm really sorry. Life isn't fair, that's for sure. My brother died young and I often think how I have not done enough with my life - and wish I could have switched with him. How are you? What are your symptoms - can you still get about without getting out of breath? There is still a lot of cause for hope with stem cell therapy - maybe to grow some new heart muscle. Or even artificial hearts and transplants. Not that I'm very well informed - but at least enough to know that there is much progress being made. I certainly feel for you.
whichwayisup Posted July 14, 2006 Posted July 14, 2006 Don't give up hope! Ever. And Magichands is right, you don't suck! None of this is your fault, believe that. Talk to your Dr about ALL options you have, medicine and procedures are changing so much... I'm sorry I'm not much help, but I wanted to reply to your post. Thinking the best for you, take care..
johan Posted July 14, 2006 Posted July 14, 2006 Hey, alchemyst. I know it's stressful and scary. I'm pulling for you and hope for the best. I think the others are right. Sometimes doctors give very dire prognosis that turn out to be way too conservative. And sometimes they are wrong. Sometimes people recover from conditions no one thought would be possible. There are a lot of advances being made, some of which might help you. You can hope, and we can too. Stay strong and positive. Find forums (probably other than LS) where people support each other and understand. Take care of yourself. Share with us here, if that helps.
burning 4 revenge Posted July 14, 2006 Posted July 14, 2006 it's no easy thing to be made of flesh and blood. i'm sorry and i sincerely hope you improve. your young and one never knows and don't be so sad. frightened i can understand, but as long as you have your dignity there is never reason for despair peace and love to you, mark
littlekitty Posted July 14, 2006 Posted July 14, 2006 I'm so sorry to hear that hon. As everyone else said, you don't suck! Try to stay positive it will help you. Speak to everyone about what your options are and what you can do. My thoughts are with you.
HeyYouGuys Posted July 14, 2006 Posted July 14, 2006 . . . Is what I have. I'm sad. They tell me that there is no "cure" for it, and that the things I can do to prolong my life are rather minimal. I'm sad. I'm not even 20 yet. And they said it's "advancing" very fast, so I may very well not be around much longer. I suck. Damn, that's some harsh news. What caused the heart failure? I work with many elderly patients with heart failure. Some have ejection fractions of only 20% or so. Yet they can be kept going for years with medications and proper diet. I highly recommend a website called (can I post a site here?) Megaheart. Just google it and it takes you to the site, or type Megaheart and a dot and 'com' afterwards. it's a healthy diet website for heart failure patients. Make you sure you don't get overheated or chilled. Temperature extremes are hard on the heart. Find yourself a good heart failure clinic through a local hospital and find out everything you can about meds, diet and reasonable excercise. God bless
KittenMoon Posted July 14, 2006 Posted July 14, 2006 Oh Alchy- I had no idea it was this bad! Isn't there anything they can do?
Asafan Posted July 14, 2006 Posted July 14, 2006 You do not suck, dear. Not at all. I don't even know you and I am shocked and upset and feel horrible for you, so I cannot even imaging what you must be feeling. My thoughts are very much with you. You must have hope though, you are too young to have that s*** happen!
Author the_alchemyst Posted July 14, 2006 Author Posted July 14, 2006 Aw, you guys--thank you so much! Reading this made me get all teary-eyed. I had been having heart "problems" since late last year--severe pains in the chest/heart area, accompanied by an inability to breath and excessive sweating and so on. At first I thought it was just stress-related, so I didn't think much of it, until one day I just passed out. After then, they told me "something was definitely wrong," but that they couldn't pinpoint exactly what it was. At first they thought I had Angina, but not all that long ago they told that it wasn't that, but heart failure instead. I felt crushed! The only medication I'm taking is in the form of biweekly shots that are supposed to strengthen the heart's muscle pumping action--and that's pretty much all I'm taking. Since the day I was diagnosed, I've been to the doctor's office many times (sigh), and there has been a high advancement of the illness, and they don't know why it's "eating my heart up" so quickly; it's as if the medication weren't working at all. I enrolled in some summer school courses this summer and I'm going to have to drop them. This worries me because I really want to transfer and how the bloody hell am I going to with these loads of W's? Last fall was the same--because of my heart I had to withdraw from the entire semester, and now again. Jesus. This is all just too much! Makes me want to rip my heart out and throw it away! Piece of junk. I still haven't told my parents. I know, I know: Why not?! What for? Even though I am a candidate for a heart transplant, the waiting list is mega-long, and the diagnosis doesn't even give me that long. I almost had a heart attack last week from the shock the doctor gave me. He told me to "enjoy this birthday because it may very well be your last." WTF!! I mean, come on! I know you medical people need to be honest, but don't be brutal! It's like they want me to die on the spot, I swear. Of course I cried like a baby and then went to the park to cry some more. I have only told my good friend and my exbf. My friend has been supportive, buying me food that's not bad for me, checking up on me, and so on. My exbf was REALLY supportive at first; he even did some research of his own to see if there is any natural medicine that could help me, since his boss' wife has a similar condition and has been kept around thanks to the natural medicine. This made me so happy but now, supposedly him, I hurt him SO much because I lied to him about something (and yes, I did, but it was something that did not affect his life at all, but he just does NOT understand that. I've apologized a million times and he just refuses to accept them) and now he is not talking to me. Needless to say that only uh, makes it worse. I'm NEVER going to leave this college, I swear! Argh! It makes me so furious! Sometimes I seriously hate the life that was handed down to me.
magichands Posted July 15, 2006 Posted July 15, 2006 I think you should tell your parents. If you had a daughter - wouldn't you want to know? I know people have kept things from me in the past - because it wasn't the right time to give me bad news... in other words trying to "protect" me - but that just made me more angry and upset - and I felt betrayed. But having said that I totally respect your decision - whatever it is. It's your life. I almost had a heart attack last week from the shock the doctor gave me. He told me to "enjoy this birthday because it may very well be your last." WTF!! I mean, come on! I know you medical people need to be honest, but don't be brutal! This is unbelievably insensitive. I read this as, "It's time for you to accept that you are going to die soon." Can you get another opinion?
Outcast Posted July 15, 2006 Posted July 15, 2006 I definitely second the suggestion to get another opinion - or see another doctor. Just because this dude says you're a goner doesn't mean it's the case. Could be there's a specialist highly experienced in treating people with your problem. There was an article in Good Housekeeping some years ago about the best heart doctors. They called 260 department chairs and section chiefs at major medical centers across the country who work in related fields. They were asked to name the best heart doctors they knew who didn't work at their institution. Maybe you and your friends could try calling some of the bigger institutions near you. Or do a search on "best heart doctors" and your city or state.
whichwayisup Posted July 15, 2006 Posted July 15, 2006 He told me to "enjoy this birthday because it may very well be your last." WTF!! I mean, come on! I know you medical people need to be honest, but don't be brutal! It's like they want me to die on the spot, I swear. There's a lawsuit in the making. What an unprofessional Dr. Get a second/third and even fourth opinion. This is YOUR life! As scary and awful as this is for you, the best thing right now you really have to think about is, telling your parents. The support they can give you, the love they will provide for you.
bonny doon Posted July 17, 2006 Posted July 17, 2006 I'm in your area so if you need someone to talk to or something just PM me and I'll send you my info. Just want to let you know there are people out there who want to help.
The slayer Posted July 17, 2006 Posted July 17, 2006 First let me say how much I feel for you. I wish that there were something more I can do than type! Your Dr is an a***, It is considered very poor practice to say something like this, partly in recognition of the fact that Dr's are not God they don't know, all they can offer is an opinion. This opinion is based only on their experience and in my view any Dr who tells you how long you have to live is a pretty C*** Dr , so they propbably aren't all that at keeping their patients alive! Definately see another one! Another reason why it is considered poor practice to define a prognosis is the recognition of how important a positive outlook is. I worked with terminally ill people for many years, in my experience if you tell someone they are going to die in 3 months then they probably will. Tell the same person that you really can't tell them how much longer they will live, they will live very much longer. I have also witnessed people live for over 10 years defying any medical theories, facts or opinions and others die, for what appears to be absolutely no reason other than they have given up. Where there is life there truly is hope and although you are clearly ill, you sound very much alive...So hang in there. If you are on the transplant list you are probably in with a much better chance than you imagine. There may be many others waiting, but there probably aren't that many others ahead of you in the queue with exactly the same blood group and tissue type as yourself. I don't know how things work in the states but here in the uk your place on the waiting list will be determined not just by how long you are waiting, but how likely the transplant is to succede and also your age in the sense of how much of a difference a transplant would make to your prognosis. So I'd say commit yourself to living and find a new Dr! With Love xxxx
Bangles Posted July 17, 2006 Posted July 17, 2006 Please don't give up just because of what a "Dr." tells you. My neighbor was diagnosed with heart failure 2 years ago, told he had one year to live. He went back to work this year and looks better than he did before he was diagnosed with the heart problem. I asked him if he was a miracle walking and he he replied "I don't know what I am but I know I am glad I didn't listen to the Dr. about how long I had left." The Dr. gave him the release to go back to work too. This neighbor was told he was soo ill he was not a candidate for a heart replacement and to make his amends and tie up lose ends when he was first diagnosed. Maybe you could get a second opinion. Hang in there. Please don't give up. *Hugs*
RecordProducer Posted July 18, 2006 Posted July 18, 2006 Honey, I am so very sorry. But doctors do make mistakes, because they don't know everything. My ex-boyfriend's father was given 9 months at most to live after being diagnosed brain cancer and operated. However some new type of therapy that he received after the surgery has made all the cancerous cells withdraw and now he is totally cured. Perhaps it will come back later, but the doctors said the bad cells would never be removed and he would be dead in 9 months. I've heard of so many cases where doctors wrote off their patients and they lived long lives after that. Do your own research and ask for the best doctor's opinion. My friend was told that her brain was "drying out" after examinations. It turned out she had a mild form of epilepsy and is living a healthy, stable life while taking medications. I wish you the best of luck, a lot of faith, and optimism. Keep us posted. And don't forget that the hope dies last...
blind_otter Posted July 18, 2006 Posted July 18, 2006 How are you? Have you told your parents? Have you thought about just doing something you always wanted to do, like traveling? I will keep you in my prayers.
Heavenseventeen Posted July 19, 2006 Posted July 19, 2006 I personally think doctors are too negative. They always say: There's litle hope. You're not gonna make it. At least some of the time, that just depresses the people and makes it worse. But you are a fighter, and the fighters are the ones that prove these doctors wrong. Just because the book has one theory, doesn't mean it will definitely happen. You will make it. You're already living proof of that.
Author the_alchemyst Posted August 20, 2006 Author Posted August 20, 2006 I got my latest exam results this Friday, but I was too chicken to read them that day, so I put them away. I finally got around to reading them today--a little while ago to be exact. Compared to the last results, I am worse. Way worse. My blood pressure is terribly high, and my heart is just having such a hard time pumping. So I am pretty bad. Quite bad. I've been doing what they told me to do, but it's not working--I'm not getting better, only worse. And then I start to cry like a baby. I just can't stop the tears. And I want my parents. I want somebody. But I have nothing. I feel so bad, it's unbelievable. Sometimes I wish my little "attacks" would just be real because I just don't want to be here anymore.
TheSilentType Posted August 20, 2006 Posted August 20, 2006 :( Wow, I didn't realize it was this bad....I wish I knew what was the underlying cause (rheumatic heart disease?)...but you don't have to disclose that to me if you don't feel comfortable Cry all you want! Crying is a good outlet for when you don't have any other...especially someone to support you....like your parents. No need to maintain a stiff upper lip...this is a hard thing to deal with on your own. It must be extraordinarily lonely to go through something that others don't understand. Just let it all out! But you can't do it on your own....You need some support...Pick up the phone or get in your car....and go see your parents. (I'm ashamed....my own problems don't seem so rough in comparison...)
whichwayisup Posted August 20, 2006 Posted August 20, 2006 You have to tell your parents...You need them now. They have to know and you can't go through this alone. Another thing, demand from your DR that you want to speak to a therapist. WIth so many emotions going on inside you, probably feeling quite depressed too, talking with someone might help you cope through this. You're in my thoughts.
Author the_alchemyst Posted August 20, 2006 Author Posted August 20, 2006 Thanks, Silent. I wish I could cry as much as I wanted, but I can't. You know how when you cry you start breathing harder? Well, that's "dangerous" for me because I need every bit of air I can get. That's why I can't run, swim, or do anything that requires heavy breathing because my heart just can't take it. Crying is the same, apparently. My parents--oh, my parents. My mom came to visit me yesterday, but I kinda wish she hadn't. A few days ago I went to visit my dad at his job, but he was really p*ssed that I showed up there without "telling him first." Of course, had he checked his voicemails, he would have realized I told him more than once. The thing is that my dad really doesn't like anyone dropping in unexpectedly at his job, and I'm no exception. He quickly asked me what I wanted so that I could leave. . . . The reason I went was because I had felt really bad (health-wise) some nights before, and I finally felt that maybe I should let them know. So, I went to go ask him if I could see him later that night to talk to him, but I never got around to asking because he brutally cut me off, telling me that he was busy, unlike me or my mother, and that if money was what I needed, that he was going to mail a check the next day. What do you say to that? So, I just told him I didn't need anything, that I was sorry for interrupting, and that all I wanted was to say hi. He asked me why I couldn't just call instead. Okay . . . So, he told my mom this and my mom, whom I hadn't seen in weeks, came yesterday, accusing me of being immature. She asked me if I didn't realize what a troubling time this was for them, and why I was being so selfish. She gave me some money for school and told me she was going to go with some family members away for a little while since she, unlike my father and I, had real problems. (That made no sense.) She also told me to get out more because I'm really pale. She doesn't know it's because of the medicne. Of course she doesn't know. She did ask me how I was--she asked me if I had done anything dumb. What the hell? Sometimes I think she mistakes me for my brother. I asked her how long she was going to stay and she said that she had to go. In my stupid sadness, I asked her if I could go with her, since I was tired of being by myself, and she said no. She said she was going to get away from the problems. I got the point. So, how can I tell these people? They don't give a sh*t. Seriously. The only thing my mom did was make my cry. I literally sat behind the door crying, althought trying to stop, for a loooong time. And of course, I felt sick afterwards. There's no winning in my life.
Author the_alchemyst Posted August 20, 2006 Author Posted August 20, 2006 WWIU--Thanks. But you see, I can't tell my parents. My mom didn't tell me where she was going and she doesn't answer her phone and refused to call back. My dad is the same way with the phone. I know where he works, but if I go there, he'll just chase me out. I once told him I needed to talk to him, but he told me to talk to my mother. My mother, in turn, sends me to voicemail. So, you see--I'm sick of their stupid neglect. I feel bad as it is; it only makes me feel worse when they ignore me so blatantly. About a therapist: Oh, yes, definitely. I know I'm pretty messed up, but you see . . . I don't have insurance, so I have to pay for every medical/health service(s) I use. The medicine I get is really expensive, so I end up cutting back on buying other stuff in order to be able to afford it. So, if I went to a therapist, I would have to pay, and I just don't have money. The cheapest one is about $75 an hour, so . . . . You see?
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