if you had to do it over again.

[turtlejoint]

This topic was moved to "Introduce Yourself"  Rerun~ Moderator

greetings.
my first time on the board/first post hi how are you yadda yadda yadda.

i hope i am fortunate to have found this board prior to starting dialysis. frankly this board scares the heck out of me. and by heck i mean hell. I'm a type 1 diabetic for 16 years, I'm 30 years old. i was diagnosed on my 14th birthday (Christmas was SO much better than my birthday as far as gifts go that year) anyway I'm just starting in on kidney disease/failure. my creatinine is pushing 3. anemia has set in and my blood pressure is constantly high. to add insult to injury I developed a pretty heavy hemorrhage in my right eye.I'm making preparations for a transplant work up and this site is giving me 2nd thoughts. anyway..life's great and it looks like its only going to get better from here.

I was reading a post on here about a woman who was going on a quest for her 4th transplant. apparently she effectively answered this post before i wrote it. But on the other side of the spectrum i see people that have opted to not even consider a transplant. to be totally honest. i already feel like crap every single day. I just watched my dad pass in December. he was 80 but in the end it was too exhausting for him to make it to dialysis regularly. I have this impending fear that with how bad i feel now (and not even having full blown KD) I don't know if my quality of life will be worth living if i have to spend the rest of my life tied to a machine dying slowly. I mean after all it says right there at the top of your site DIE-ALYSIS. Ive thought about how i wont be able to travel. or how its too late to already (I wanted to honeymoon in Jamaica when the time comes)  now i wont.

i feel like an outsider. even though Ive always known that the world would go on with out me, i never thought that time would be so soon. this is how i feel now. how much worse is this going to get when i get REALLY sick.

My potassium levels are pretty high. 6.3+ i hate to say it but i sort of hope that its the cardiac arrest from hyperklemia that gets me nice and quick instead of kidney disease taking its sweet time killing me. Ive been dying for 16years i guess its about time.

but why does there have to be this irony. seems like everything was starting to take shape. my girlfriend and I just bought our 1st house. I just paid off my car. I found just enough stuff to do on this planet to keep myself happy and justify my existence. and now my survival has become my life instead of my life being my life.

you know I'm really sorry that this turned into such a longwinded and unfocused rant. but coming here and seeing what you all had to say really left me lost.

nuff said.

[Sara]

Welcome turtlejoint.  I am the wife of a diabetic turned dialysis patient.  Some of the stuff I read on here scared me too, when I first joined.  Some of it still does.  Just wanted to say that my husband and I have been and are currently dealing with the types of fears you mention in your post.  Also, it IS possible for a dialysis patient to experience most, if not all, of life's pleasures.  You can travel, as several of the board members can attest to.  You can work (some people can't, and that's OK), get married, go on your honeymoon, have kids, etc.  Life is not over at diagnosis.  I know that I can't possibly understand everything dialysis patients go through because I'm not experiencing it myself, but I do see what Joe goes through, and read about what the people here go through.  Anyway, just wanted to say that.  I hope you post some more.   

[willieandwinnie]

Hi turtlejoint,
Welcome aboard. I like Sara, am a wife of a home hemo patient (Len). I came as close as you can get to losing my husband (best friend), and I have to admit that watching everything that he has been through and will continue to suffer, I feel blessed to have him with me for however long it might be. We are going through it together. We have a appointment to meet with the transplant surgeon at the end of June. Maybe Len won't be a candidate because of other factors, but we are willing to consider all our options. Doing home hemo was my idea (not bad for someone that passed out at the sight of a needle), now I do all his treatments and his outlook has improved greatly.

You said you feel like an outsider.  There is no such thing when you are facing a critical illness. You said you have a wonderful girlfriend, purchased a home together, own a car and have come up with many things to keep you happy. Please keep a positive attitude and know all your options.

This is a wonderful site to learn about kidney disease and what is available to you for treatment.

willieandwinnie

[Rerun]

Hi Turtle,

I hope you find the answers you will be looking for, and be sure to post often, ask as many questions as you want. That's what we are here for. Since you are not on dialysis, you will have plenty of time to live your life.  Even after dialysis, you do what you can and if you have someone who loves you dispite your illness that is worth trying to stay alive for her.

Be sure to check out these links, these will help get you started.

Site Rules: http://ihatedialysis.com/forum/index.php?topic=540.0

Gender/Location: http://ihatedialysis.com/forum/index.php?topic=584.0

Okay, introduction is over.  Post elsewhere.   

Spelling/Grammar: http://ihatedialysis.com/forum/index.php?topic=411.0

Good Luck and I bet you have a couple of years left with a creatinine of 3.  Hang in there.

[Gus]

turtlejoint, weclome!

Dialysis is a new lifetsyle and the key to live many years with it is education. Education spells freedom! This will be for the rest of your entire life and you have to educate yourself on taking the responsibility of caring for yourself. Its up to you, its your choice.......try your best on learning about dialysis and discover what options are available to you......One great place to start educating yourself is the "Kidney School"..... http://www.kidneyschool.org/

[Bajanne]

Welcome to our site.  Don't allow the honesty to deter you.  When you know what all your options are, then you are able to make intelligent choices.  That is what this site does for you.  There is an honesty here that I really appreciate.  I came into contact with this site just as I was diagnosed with ESRD and just before I started haemodialysis.  I can't tell you how much the openness and honesty here helped me through the experience.
I am travelling this weekend to Puerto Rico.  I agree that I do have to make more arrangements than before.  I can't just pick up and say I am going to spend a week here or there, but there is a way through everything.  Hope you find it, so you can live LIFE, inspite of this inconvenience.