I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: DomJDavis1985 on February 23, 2011, 09:45:25 PM
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:shy;
Hello everyone how are you doing? I am a new Dialysis Patient, i was diagnosed with Kidney Failure on February 2nd 2011 and have been doing dialysis 3 days a week, Tues, Thurs and Saturdays with a 4 to 4 and a half hour run time. I stumbled across this site while googling about Dialysis and it looked interesting so i decided to join...before becoming registered i kinda looked through a bunch of the posts and it really seems like a cool site with warm, friendly people who can hopefully answer questions or at least provide a little distraction from the 12+ hours of Dialysis and the suckiness associated with it lol. (am i allowed to say suckiness here?) ha ha
about me..i am a 25 year old,african american female born and raised in Raleigh, North Carolina...i am a college student and i also work full time as a waitress and i also mentor kids on occasion. I am in school for Social Work/Human Resources.....I don't smoke, don't do drugs...hell i only drink maybe one alcoholic beverage a month if that much lol.....So how did i get on Dialysis????.....According to my doctors my kidneys failed as a result of high blood pressure( i am also diabetic) i knew about the diabetes but the high blood pressure and kidney failure totally came as a surprise.
I was sick for about two months befofe going in the hospital with what i thought may be whooping cough or bronchitis (both of which i have had before) i was constantly coughing...all day, worse at night..so bad that i could not sleep at night and could barely breathe and had to resort to sleeping in a recliner....I had went to the doctor 3 times before of which i was prescribed Z Pack antibiotics as well as several codeine laced cough syrups....all of which didn't help at all with the coughs.
The coughing i dealt with but the shortness of breath really scared me...it got so bad where if i walked from the dining room of my restaurant to the kitchen (which is about 25 feet) i would become short of breath and had to sit down and catch myself....i had constant headaches..was sleepy all the time, and vomiting almost daily..this alarmed me . one day after being so short of breath i thought i was gonna pass out , i left work early and went to the emergency room at the local hospital. After several blood tests and urine tests the doctor came in and told me that the cough i had was the least of his worries...what he was really worried about was my KIDNEYS....This alarmed me because for starters i am only 25...and also my mother passed away at the age of 34....and less than 6 months before her death she was told that she had kidney failure and was placed on Dialysis.
I stayed in the hospital for about a week, within that week i had a temporary catheter placed in my chest and had 4 dialysis treatments. The first treatment was only for 2 hours and my body did fine with it. the second treatment was supposed to last for 3 and a half hours...however two hours into it i got a horrible migraine and vomited so they cut my time....the 3rd treatment i had the same result, horrible migraine and vomiting...the 4th treatment they gave me extra strength tylenol and benadryl...i did feel a small headache but nothing near as bad as the other two and i had no vomiting....
I have now been at an outpatient dialysis clinic for about 2 weeks and i have no problems with headaches or vomitting...the occasional mild foot cramp happens from time to time and sometimes i feel a little light headed and weak but for now i am able to drive myself to and from the treatments...the first week all i wanted to do was sleep for hours after each treatment..but now i am wide awake...and have even worked a short shift at my restaurant after two of the treatments.
This has definitely been an emotional journey for me...there are days when i feel great and then there are days when i feel soooo weak and out of it...but the good days are slowly outweighing the bad days.'
In the hospital i was visited by a social worker who had me fill out papers for disability....i filled out the papers but for now i feel like if i am approved for disability i may deny them..i don't like the fact that they put a cap on what you can earn...and i honestly do not want Dialysis to have that much of an effect on my life...i have been working since i was 16 making my own money and i want to continue that...i have talked to several of the nurses and doctors about Nocturnal Dialysis...the doctors say if i want to be able to work more hours that the Nocturnal Dialysis is a great option for me...
There are days when i look at my friends and i feel sad and scared that i may not be able to grow and get old with them..it scares me because online and in magazines i read about people who live for 30 40 years on dialysis, but then i read about people who die after 3 or 4 years....i don't want to die before my 30th birthday!
The doctors tell me that i am a good canidate for a transplant considering my age and the fact that other than my kidneys my health is decent....but i can be waiting on the donor list for years and years....the doctors suggest asking a friend or family member to be a living donor....and i am sure that many friends or family would do this...but my pride won't let me ask...i mean its not like i am asking for a stick of gum! lol, i'm asking for a body organ.
Right now the main thing i am trying to do is to keep Dialysis from having a major effect on my life...i just consider it a routine...instead of Tues Thurs Saturday classes, i have Tues Thurs Sat dialysis......i am considering doing the home dialysis once i read more about it...but i don't want to miss anything
So far the main thing i am concerned with is eating right..its really hard to not eat salt....everyday i search for seasonings that are just as good as salt and seasoning salt with no sodium...Ms. Dash is pretty good,but its hard to get used to....and the foods that i can and can not eat still kinda confuse me....but hey i'm still a newbie..my fluids have been pretty good, i have only gained between 2 and 4 kg between visits....and i still pee quite regular
sorry for the long intro....there is much more i wanna say but i forgot..this is just an intro lol
~Dominique
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Welcome to IHD Domminique!!!!!
:welcomesign;
I *LOVE* your attitude!! You totally rock, and you're the sort of person that is responding the best way you can to being thrown into a dreadful and scary situation with relatively little warning. It's not even been a month since you were diagnosed, and that's so much to take in.
I admire your desire to not let dialysis take over your life and for you to continue working, college etc (incidently there's another new member around your age ALSO studying Social Work - you two should chat!).
It's so much to take in, but it does sound like you're doing so well already so soon, which is a great thing - probably due to your good health overall. I think this bodes well for you dealing with working, studying and hopefully doing noctural also, and in the longer term getting a transplant and hopefully being able to lead a more normal life.
It's great to have you with us, and really look forward to hearing more from you as you go on your journey!
RichardMEL, Moderator
PS: I'd like a burger with the lot, a serve of fries and a root beer please. I'll leave a good tip! :rofl; :rofl; :rofl;
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G'day, Dominique, and :welcomesign;. Great intro and great attitude. I think you'll be giving a lot to this site and gaining a lot from it.
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well thank you so much....yeah i am trying to keep a positive attitude...even though there are days i just wanna stay in bed allday with the covers over my head and say WOE IS ME!...but that wont help anything...i am just trying to stay positive and get as much information as i can about this....being stressed will only raise my blood pressure which will only make my situation worse.....i will have to look into the other member close to my age who is also studying social work....my illness has made me want to look into being a dialysis center social worker now....considering i will have first hand experience....lol@ ur last line....one of my coworkers told me i should use my kidney disease as a way to get more tips from customers lol....play the sympathy card, lol...one more 10% tip and i just may,lol
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:cheer: Hello to u too Galvo...and yes i plan on submitting alot to the website
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Hi Dominique! Welcome to IHD. :) I'm the other member Richard mentioned, haha. I was really excited when I saw your post...and found myself going, HEY WAIT!? This sounds familiar! Hahaha. How small the world is, huh? Feel free to talk anytime, either via this post, another post, or a personal message. I'd love to have a chat with you.
-Sam
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Hi Dom and welcome to IHD. I was also 24/25 when I had to go on dialysis. IT was also a surprise as I was not feeling well and they kept treating me for an ear infection (which I obviously didn't have) I'll say it again..... AND they say we have the best health care in the world"???
Idiots!
Anyway, I'm glad you found us. Hang in there! Oh, by the way I'm almost 50 now. And doing well on nocturnal hemo.
Rerun, Moderator :welcomesign;
PS.... Did you know February 2 is Groundhog's Day? Have you seen the Movie? :rofl;
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:welcomesign;
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Hi Dominique! Welcome to IHD. :) I'm the other member Richard mentioned, haha. I was really excited when I saw your post...and found myself going, HEY WAIT!? This sounds familiar! Hahaha. How small the world is, huh? Feel free to talk anytime, either via this post, another post, or a personal message. I'd love to have a chat with you.
-Sam
Hey Sam, great to meet you...yes i will probably be spending alot of time on this site ...u can also email me if you like, and anyone else with questions ..my email address is DOMJDAVIS85@YAHOO.COM
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Hi Dom and welcome to IHD. I was also 24/25 when I had to go on dialysis. IT was also a surprise as I was not feeling well and they kept treating me for an ear infection (which I obviously didn't have) I'll say it again..... AND they say we have the best health care in the world"???
Idiots!
Anyway, I'm glad you found us. Hang in there! Oh, by the way I'm almost 50 now. And doing well on nocturnal hemo.
Rerun, Moderator :welcomesign;
PS.... Did you know February 2 is Groundhog's Day? Have you seen the Movie? :rofl;
WOW So you have been doing Dialysis for over 20 years huh? did you not want a transplant or did one never become available?? that gives me hope though that Dialysis is not a death sentence...i mean even though it sucks..i would rather live 30 40 years on Dialysis than die in 3 years.....And yes i know February 2 is Groundhogs Day lol...i have seen that movie several times.....when i was younger i used to wish that i could start bad days over and over again and correct my mistakes like Bill Murray did in the movie...lol...its a pretty good movie, although "What About Bob" is my favorite Bill Murray Movie
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Hi, and welcome!
I think you are gonna be just fine. You are smart, young and in relative good health, but more importantly, you are doing the sucky things you have to do to stay well. So, well done you!
It's great that you want to be well educated about kidney disease, but I will warn you that the more you know, the easier it is to get scared. Oh Lordy, I have scared the bejeebers out of myself on SO many occasions after reading one small little bit of info I didn't know before. I've discovered that all of the things that can happen to a kidney patient are NOT going to happen to me and they won't ALL happen to you, either, so out of all of the information you gather, do keep in mind that statistics can't ever tell the whole truth.
It does sound like nocturnal might be ideal for you. Check it out and come back and tell us what you think about it. Not only will it free us more time for work, it will be better for your body. The goal is to keep your body in tip top shape so that you can take full advantage of a transplant.
It's not easy to ask for a kidney because, like you say, it's not like asking for a stick of gum. But there are all sorts of articles and stories on this site that may help you in that regard if you should decide to pursue it. Remember that being able to literally save someone's life is a transformational act. If one of your friends or family members want to know what it is like to be a true hero, donating an organ is a way to find out. Try not to deny people the chance to save you. :cuddle;
I'm so glad you've joined us!
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I had a transplant for 17 years. Forgot to tell you that part. But, I have a friend who has been doing dialysis for over 20 years no transplant is is still very much alive and active. She just never wanted to deal with all the transplant drugs so she chose hemodialysis all these years.
Rerun
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Hi Dominque,
Don't get down. I know exactly what you re going through. I found out about my kidney disease when I was 25. I am now 30, and I have every intention of seeing 40, 50, 60 etc. However, I have had to put some limits on what I can do. I just take it a day at a time. Where are you in school. I went to Peace in Raleigh.
Take care,
Katie
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Hi, and welcome!
I think you are gonna be just fine. You are smart, young and in relative good health, but more importantly, you are doing the sucky things you have to do to stay well. So, well done you!
It's great that you want to be well educated about kidney disease, but I will warn you that the more you know, the easier it is to get scared. Oh Lordy, I have scared the bejeebers out of myself on SO many occasions after reading one small little bit of info I didn't know before. I've discovered that all of the things that can happen to a kidney patient are NOT going to happen to me and they won't ALL happen to you, either, so out of all of the information you gather, do keep in mind that statistics can't ever tell the whole truth.
It does sound like nocturnal might be ideal for you. Check it out and come back and tell us what you think about it. Not only will it free us more time for work, it will be better for your body. The goal is to keep your body in tip top shape so that you can take full advantage of a transplant.
It's not easy to ask for a kidney because, like you say, it's not like asking for a stick of gum. But there are all sorts of articles and stories on this site that may help you in that regard if you should decide to pursue it. Remember that being able to literally save someone's life is a transformational act. If one of your friends or family members want to know what it is like to be a true hero, donating an organ is a way to find out. Try not to deny people the chance to save you. :cuddle;
I'm so glad you've joined us!
you are so right..the first week i literally stayed up all night and day reading articles on the internet about Kidney Disease and Dialysis..and it scared the crap out of me and depressed me so much....i didn't feel better until i finally said screw it, and shut my computer off and stopped reading...
i have been going over and over in my mind how to ask someone for a transplant...so far i know maybe two people that would definitely do it...however there is question as to whether there blood type is a right match..and also if their health is good enough..one is overweight and the other person has a family history of high blood pressure....
so why is Nocturnal better for the body? (sorry i am like a first semester freshman, second day of class still looking over my syllabus with this kidney disease thing lol)
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I had a transplant for 17 years. Forgot to tell you that part. But, I have a friend who has been doing dialysis for over 20 years no transplant is is still very much alive and active. She just never wanted to deal with all the transplant drugs so she chose hemodialysis all these years.
Rerun
so what happened to the transplant? did it go bad too? (sorry if i am getting too personal...i just have so many questions) the doctors tell me that transplant is a good option for me....but if its only gonna last a few years i'm wondering if i should just stick with the dialysis instead of getting my hopes up on a transplant that will eventually go bad too.
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Hi Dominque,
Don't get down. I know exactly what you re going through. I found out about my kidney disease when I was 25. I am now 30, and I have every intention of seeing 40, 50, 60 etc. However, I have had to put some limits on what I can do. I just take it a day at a time. Where are you in school. I went to Peace in Raleigh.
Take care,
Katie
hey! i went to Peace too...for my first year...and then i transfered and i am taking classes at Wake Tech and North Carolina Central University..i really liked Peace but at the time they did not have the major i wanted...also they were super expensive! as a matter of fact i am still paying them off now as we speak! lol...but it is a beautiful campus with down to earth people for the most part. So what type of limits have you had to put on yourself??? th most confusing part for me is still what i can and can not eat....in the hospital they gave me a list of several foods i can and can't eat,but i got so confused because some of the same foods were on both lists!!!???..i am also looking for seasonings that are sodium free...Ms. Dash is pretty good..but i am looking for others too...
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i have been going over and over in my mind how to ask someone for a transplant...so far i know maybe two people that would definitely do it...however there is question as to whether there blood type is a right match..and also if their health is good enough..one is overweight and the other person has a family history of high blood pressure....
When I went to a transplant seminar put on my our renal dept (back in 2005 or so) their answer to this question was to NOT ask. The idea being, yes let people know you need a transplant, but don't ask directly, don't pressure people (or at leastpossibly make them feel pressure).. let it be for them to step up and come forward. I suppose the thinking there was that if they come to the decision themselves it's more natural and not forced in any way.
I know that seems a bit odd but I understand the rationale behind it. They were very strong on not pressuring a potential donor.
As for your concerns about the people you think will step up yet one is overweight, the other has the BP issues, this is what the evaluation will go through - should they agree to go through with the testing, the transplant evaluation will go through ALL of this stuff, and the team will make a choice, or recommendations(eg: no go till you loose weight). In that respect it's out of your hands. Like when my sister was tested and denied due to her BP being slightly elevated. She stepped up and offered, and that's all I could ask or expect of her.
so why is Nocturnal better for the body? (sorry i am like a first semester freshman, second day of class still looking over my syllabus with this kidney disease thing lol)
Here's my answer to this: Typical nocturnal dialysis is done over say 7-8 hours overnight while you snuggle up in your pj's and hopefully sleep. It's better for the body because you'd be doing a) more dialysis (so more cycles of your blood going through the filters and being cleared of toxins and b) it would be slower and gentler, so less pressure/strain on your access and body in general. Specially if you run at higher pump speeds (>400) which is typical in the US on hemodialysis(thus to get shorter HD sessions and more throughput of patients) you could go down to 300 or under, still get great dialysis but much gentler on your system.
There may be other reasons of course, but that's my understanding.
They often talked of bringing in nocturnal in my unit if they could figure out the staffing. I would have signed up in an instant to do it.
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Dominique, the one crucial thing to remember is that whereas normal kidneys work all the time normalizing your fluids and cleansing your blood of toxins, standard dialysis (in a clinic, 3-4 hours a time) will never be able to do the job as well as native kidneys. So, the trick is to dialyze more like your healthy kidneys would, ie slower and more often. That's "optimal dialysis" as opposed to "adequate dialysis". The downside is that it means more time dialyzing which is burdensome. The upside is that it is less traumatic for the body and it is more efficient; you have a much better chance of being able to eat and drink more normally. With nocturnal dialysis, you would dialyze as you sleep, which would mean that you would dialyze for 6-8 hours (this would be determined by your neph). Clinically, nocturnal dialysis gives results as good as cadaveric transplantation, and that's pretty damn cool!
There are so many things to think about, and it can get overwhelming. I've had fsgs for 20 years, and I'm still feeling very overwhelmed and I still find all sorts of scary stuff on the web to obsess about. There really IS such a thing as too much information!
No one will be able to tell you how long a transplant will last. Everyone has a story. One IHD member's transplant lasted literally only a few hours. My husband's secretary's husband is diabetic and has had a transplant for 20 years. He is one of those people who can't be arsed to take care of himself, but that transplanted kidney doesn't seem to care one whit. But if your doctors are telling you that it might be a good treatment for you, well, they have no reason to lie. That's their educated guess, and it's as good as you're gonna get. If there was a compelling reason why a transplant would not work for you, I'm sure they wouldn't let you on the transplant list. You could go ahead and be evaluated, get on the list and at least be accruing time while you have more of a think about it...
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hmmm okay....well i will definitely look into the nocturnal....
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Dominique, the one crucial thing to remember is that whereas normal kidneys work all the time normalizing your fluids and cleansing your blood of toxins, standard dialysis (in a clinic, 3-4 hours a time) will never be able to do the job as well as native kidneys. So, the trick is to dialyze more like your healthy kidneys would, ie slower and more often. That's "optimal dialysis" as opposed to "adequate dialysis". The downside is that it means more time dialyzing which is burdensome. The upside is that it is less traumatic for the body and it is more efficient; you have a much better chance of being able to eat and drink more normally. With nocturnal dialysis, you would dialyze as you sleep, which would mean that you would dialyze for 6-8 hours (this would be determined by your neph). Clinically, nocturnal dialysis gives results as good as cadaveric transplantation, and that's pretty damn cool!
There are so many things to think about, and it can get overwhelming. I've had fsgs for 20 years, and I'm still feeling very overwhelmed and I still find all sorts of scary stuff on the web to obsess about. There really IS such a thing as too much information!
No one will be able to tell you how long a transplant will last. Everyone has a story. One IHD member's transplant lasted literally only a few hours. My husband's secretary's husband is diabetic and has had a transplant for 20 years. He is one of those people who can't be arsed to take care of himself, but that transplanted kidney doesn't seem to care one whit. But if your doctors are telling you that it might be a good treatment for you, well, they have no reason to lie. That's their educated guess, and it's as good as you're gonna get. If there was a compelling reason why a transplant would not work for you, I'm sure they wouldn't let you on the transplant list. You could go ahead and be evaluated, get on the list and at least be accruing time while you have more of a think about it...
:thx; :cheer: :2thumbsup; Thank you so much for the great info...
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Oh, I've got a lot more... ::) :rofl;
Just wait until Bill Peckham and hemodoc come back from the kidney conference in Phoenix. They are our resident "everything you want to know about optimal dialysis" guys. I'm a novice compared to those two! :clap;
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:welcomesign; Dominique!
I'm sorry that you've suddenly found yourself on dialysis ... my Blokey (husband) suddenly found himself needing dialysis nearly two years ago (at the age of 33) so I know the suckiness of that and the whole malarkey of suddenly having so much new stuff to research, learn and digest.
When I went to a transplant seminar put on my our renal dept (back in 2005 or so) their answer to this question was to NOT ask. The idea being, yes let people know you need a transplant, but don't ask directly, don't pressure people (or at leastpossibly make them feel pressure).. let it be for them to step up and come forward. I suppose the thinking there was that if they come to the decision themselves it's more natural and not forced in any way.
I know that seems a bit odd but I understand the rationale behind it. They were very strong on not pressuring a potential donor.
I would agree with this. I know that Blokey found it ever-so hard to NOT ask his brother (his mum and her cousin both offered but neither could actually do it) and was sorely tempted on more than one occasion. However, we just talked LOTS about transplantation around him. He didn't offer. Blokey is disappointed but I can't imagine how much more disappointed he would be if he'd asked and been turned down. I offered once I'd read all the gumpf and done my own research, and I'm currently going through all the hoops.
I hope that things work out for you.
;D