I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: JackimusPrime on July 12, 2007, 09:52:40 AM
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I'd like to start off by saying I'm not currently on dialysis, I'm just a guy with unhealthy kidneys that wants to learn more about what is probably inevitable for me.
I'm 21 and I live in San Diego (going to San Diego State University) and I've recently figured out that my kidneys are not healthy. I went to the doctor and took a few blood tests that have shown that my creatinine levels have been continuously rising beyond the norm. One doctor said I probably have polycystic kidneys but I guess the next step is a sonogram to try to figure out what's going on. After a lot of research on the various kidney diseases I feel that dialysis may be a reality for me in the future and this forum seems to have a hell of a lot of people who I can learn from so maybe the transition wont be too bad.
I've always considered myself a healthy person, I played football in high school and have always been involved in sports. I've always eaten healthy with no drinking/no smoking and remained active so this really struck me hard. I still can't comprehend having an incurable disease and it's driving me nuts, it's all I can think about now! I have a beautiful girlfriend who has no idea about any of this yet (she's visiting family out of the country and i don't want to ruin her trip). She loves me so much and I know it's gonna hurt so damn much to tell her... i'm just feeling depressed about the whole ordeal as this is changing my entire outlook on life. I really wanna know how you guys came to accept it because I really want to skip this whole stage of anxiety/depression and have a positive outlook on everything. I'm not like myself recently, and I feel that when school starts back up (i'm on summer break) I'll have trouble concentrating on my studies and when my girlfriend gets back I wont be able to enjoy myself with her without thinking about this crap.
I guess I do have a couple questions about dialysis (and I will use the search button as well!) to accompany my intro. I don't know too much about dialysis so here are a few (probably very dumb) questions:
1. I love the outdoors and I love exercise/working out. When you're on dialysis are you still able to stay active and focus on keeping the rest of your body healthy?
2. I really want to support my family in the future, even if I'm not well. Is it possible to work full time while on dialysis?
I appreciate it guys, and I look forward to learning a lot from all of you. And to Epoman: this website is the best kidney disease/dialysis website on the entire web, it's the most active and has such lively members. Keep up the good work!!
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Hello and :welcomesign;.
As far as your questions are concerned, I am not a patient but a staff member so I can't help you. There are however many people here that can answer your questions. Though from what I have read here it really seems to vary from person to person.
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Jack...this is a great place for information on everything from the phases of kidney disease to dialysis, transplant, favorite restaurants, and trips to Las Vegas!
In San Diego UCSD Hillcrest offers a great transplant and kidney patient support group that meets monthly across the street from the hospital. Just give UCSD transplant a call for the meeting date and more information.
Welcome to the site!
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:welcomesign;
this is a good place to land
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Welcome to our caring and sharing community. You have done some thing great for yourself, by coming here even before you start dialysis. I myself discovered this site just a short time before I started and I was totally prepared for everything that I subsequently faced.
My answers to your questions (although we don't encourage questions in this section):
Of course you can continue to exercise,etc. In fact, it is encouraged.
You can continue to work. I am a high school teacher and really, I feel much better now that I am dialysis.
The only problem I have is that we have limited dialysis times and I have to take time off for my dialysis each week. But if you can fit your dialysis in seamlessly, go for it.
My advice is - keep reading and keep posting.
Bajanne, Moderator
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Welcome JackimusPrime, good to have you aboard.
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Welcome to our caring and sharing community. You have done some thing great for yourself, by coming here even before you start dialysis. I myself discovered this site just a short time before I started and I was totally prepared for everything that I subsequently faced.
My answers to your questions (although we don't encourage questions in this section):
Of course you can continue to exercise,etc. In fact, it is encouraged.
You can continue to work. I am a high school teacher and really, I feel much better now that I am dialysis.
The only problem I have is that we have limited dialysis times and I have to take time off for my dialysis each week. But if you can fit your dialysis in seamlessly, go for it.
My advice is - keep reading and keep posting.
Bajanne, Moderator
Wow that's great. Thanks for the response, I'm learning so much already.
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Hiya JackimusPrime, and Welcome!
You've found a good place to find information. But don't despair. You are young and healthy at present. Find out all you can about what is causing your creatinine levels to rise, and get a diagnosis. Knowledge gives you Power, and eases fear and worry! Learning HOW to keep yourself well is the first step.
Kelli :)
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:waving; Hello JackimusPrime,
Welcome to IHD! I am sure the news about your kidneys is hard to take, but thankfully you can learn a lot here!
My daughter recently had a transplant at Scripps Green Hospital in La Jolla, they were wonderful to work with.
You can read more about PKD here http://ihatedialysis.com/forum/index.php?topic=335.0 - in most cases (but not all) it is hereditary - any family history?
Anyway, use the search feature to find existing threads, and please post any questions you want under the topics you find.
Welcome - and best of luck to you!
Karol
okarol/moderator
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Hi JackimusPrime!
You can add my Welcome to the growing list of members welcoming you!
You are newly diagnosed and terrified. That is understandable, and we've all been there. We are all here now to tell you that you'll get through this. You can read about all of our experiences good and bad in the posts on these boards. Hundreds of life stories all with something in common.
I have PDK, and I've written about my experiences here on IHD. There are a lot of us here on the boards, and many with great advice. Black has written some great stuff about fistulas... Zach is a diet guru .... And I can't say enough about our moderators. Sluff has been everyone's big brother, and Goofynina, well, I just flat out love reading her posts. - There are too many people to mention, you'll know them all when you read their posts!
Depending on what your numbers are, you could have a long time before dialysis. Also, many people are getting transplanted well before they are about to start dialysis. Managing your health is an adjustment, but hopefully it won't get the best of you- and we're here for you. EPOMAN is here in spirit and his posts have to be his voice for us now. He gave us a solid foundation. Now you are helping to build on it.
Exercise and working out can really help maintin your health. If you have PKD, you'll be told to monitor your blood pressure, and to try to maintain a low protein diet. (your Dr. should have a dietition counsel you.)
You can work on dialysis. I do, and so do many others on the boards. Since you are still in school, you'll have some time to make choices about what kind of work you want to do, and factor your kidney disease into your choices.
You are young, healthy (yes, that is a relative term, but in this peer group, right now, you are one of the healthier ones) and hopefully you have an early diagnosis. Keep yourself well informed, (a good start joining IHD) make sure that you have a nephrologist that you respect and trust, and life will go on.
Best,
Anna
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Welcome JackimusPrime,
Like you I am pre-dialysis as well, but there is lots of helpful information available here. You will get an education by reading through this site. It doesn't matter what the topic is, you will find honesty in every post. We have become one large family, that really cares about one another.
Enjoy your time spent here at ihatedialysis.com, we will see you in the forums.
Sluff/ Admin
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Wow you guys are unbelievably great. I don't know too much about what I have, the doctors just keep giving me "probably this probably that" with no solid diagnosis yet. This waiting game is killing me and I can't handle this very well. I'm very tired but can't lay down because I'm too anxious, it's weird. I end up going to a jacuzzi at my buddy's complex daily and just trying to ease my nerves there. I have a couple more blood tests/sonogram and finally a meeting with a nephrologist to discuss everything next week. I'll update you guys when I find out next week. I'm very envious that you guys are so strong you are all my inspiration.
I've been spending a lot of time searching through the board and I found a lot of great information relating to: exercise, diets, the mechanics of the dialysis machines and the different types of dialysis, spousal relations, and personal stories in the introductions that really give me inspiration. I probably read every introduction up to page 5.
Thanks again, and Epoman and his family are in my prayers.
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You will probably need a kidney biopsy before they can give you a solid answer, until then the only answer you will get is that your kidneys are deteriorating. Good luck and post often.
www.webmd.com/a-to-z-guides/Kidney-Biopsy
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Its great that you have found this site. We look forward to hearing from you on a regular basis. I also am not on dialysis yet and my condition started 24 years ago so it could be a long time before you start. It is important to watch your diet and take medication to keep your blood pressure down and do exercise on a regular basis. I run 3 miles 3 times a week and as others have said you can still work and live a full life. Please stay in touch and let us know how things work out.
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hey jack :welcomesign; i have pkd also and so do both my sons 21 and 23, so far they are going ok, i have only been on dialysis since April, there are a few threads on pkd here, anyway welcome and keep us posted.
cheers charee :ausflag;
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Hey Man, good to have you aboard. I am on hemodialysis M-W-F go to work 5 days a week so you can do it too. Some days it kicks your ass and some are just somewhat normal.....Boxman55
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Welcome to the IHD Family.
You'll find lots of answers here, lots of support and many friends.
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:welcomesign; Glad you found this site. I hope you find all the information you need. I am a little older than you, I'm 27. My KF started when I was 21. I was on dialysis for about 9 months and I worked full time. It was not easy. I wish you the best of luck and I hope you can go for many years without having to start dialysis.
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Welcome to the site. You are well on your way to finding some answers here to your questions.
First, yes, you can work. I am a junior high school, middle school teacher and still work after eight and a half years of hemodialysis.
Second, if you keep yourself as healthy as possible you can do most anything while on dialysis.
Welcome and good luck!
kitkatz,moderator
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Welcome, Jack!
As everyone else has said, yes, it is possible to work full-time while on dialysis. Educate yourself about the different types that are available and remember that things change quickly...in the five years since my last transplant, they have started training patients to do hemodialysis at home, who knows what will be added by the time you're ready to start?
Also, keeping yourself informed and aware of your condition can do a lot to ease the anxiety and depression you're dealing with. Not to worry, all that's normal when facing such a potentially life-changing diagnosis. Remember, we're here to vent to if you need it!
KT
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Hey Jack, Welcome to IHD. I was 21 also when i found out my kidneys were failing so i totally understand how you might be feeling.
To answer your question about doing exercise and keeping active, i have been on dialysis for 3 and a bit years and i still continue to go to the gym 5 days a week and keep myself fit and healthy.
Hope things get better for you.
Welcome.
Amanda
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Welcome Jack--this is a great place for information and support. There are a great deal of caring people here ready to help you. Try not to look too far ahead. Get informed and educated, but live today and enjoy where you are. Your girlfriend will be worried for you, but she loves you and will be a good support for you. We are here - and we are glad you found us.
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Years ago I had friends in Del Mar and used to visit them often ... running on the trails behind Torrie Pines HS (now over developed with houses). And going to The Salk Institute for a few trips off the cliffs.
I started hemodialysis just before my 24th birthday ... and I'm still going strong. Whenever dialysis begins for you, manage the renal diet well, keep working out (yes, with weights) and continue with your career, if you can. It all counts.
My life as a television documentary producer-director began after I started hemodialysis.
A good attitude always helps ... and some luck.
Regards,
8)
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Hey Jack,
you sound like a positive guy and that is the one most important thing about how you go about accepting your predicament.
You can carry on as normal and not let this beat you as long as you have the right frame of mind. I am 35 and started hemo last year. I am still working and fit my dialysis round my work schedule.
Your girl likes you for who you are so don't let your kidney failure get in the way of that. Embrace it together.
Any questions you may have then feel free to ask and don't be afraid to PM anyone if you want to ask personal stuff.
Remember you have joined a site with wide and varied experiences and opinions. This illness affects us all in different ways.
Good luck buddy and remember we are here for you.
Matty.
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:welcomesign;
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:welcomesign;
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Greetings from another Southern Californian(Long Beach). I know that you
can see that there are a lot of us in similar circumstances. I mean those
in dialysis and those of us still in pre-dialysis. Sometimes it does get a
bit depressing wondering about dialysis, but I have really found my
fellow members to be both knowledgeable and wonderfully supportive.
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:welcomesign; Hi Jack,
My son is 22 and has a kidney disease FSGS he started on dialysis in Feb of this year. A kidney biospy would definetly tell what is going on. My son is on disability right now. ANd he has a beautiful gf too! I am sure she will be there to support you.
Feel free to write anytime. There are wonderful caring people on this site that can give you a world of info and encouragement!
Lori/Indiana mom to Dustin 22 FSGS/ dialysis
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Welcome Jack, from a native San Diegan.
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Welcome. I have had kidney disease since I was 2, I am 37 now and will be starting dialysis this year. I have managed to arm myself with knowledge and it has helped tremendously. I do still go through periods of incredible sadness and dispair. I completely understand your feelings. They are totally normal. When your girlfriend gets back spend some time together researching it on the intenet and of course she can always sign up with IHD and walk the road with you. Here is a good link with printable book on all the basics of kidney diesease and it's stages. I hope this info is useful for you and your family. Write often. You're in good hands with IHD.
http://www.aakp.org/library/attachments/ckdbook.pdf
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Welcome, Jack. I'm glad you found us, as you've found out, there is a wealth of information on this site. Not only that, there are wonderful people here as well. You can rant if you want to, you can ask questions if you wish, or you can be silly, however you feel. We encourage honesty because, if you can't trust fellow sufferers, who can you trust? WE know what it's like. We are strong, but we went through the same emotions and feelings you are going through. Heck, a lot of of still are. I know I am. I still get mad at my situation. I still get depressed. I allow those feelings to happen, get on here, either vent it, or read a silly post, or a thought provoking post, and I feel better, because I am NOT alone.
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:welcomesign;