advice and help

[EMMA]

hey everyone...

I have known for a few years that i would need dialysis; however, now that it is imminent...I cant control my feelings...one minute I feel strong and that I can handle this and the next I feel like I will easily be defeated...please let me know how you all handled this time in your life...i try to talk to friends butt they dont understand...I feel sad as my brother is a match and he wont donate so I dont know how I should feel about that either...I am crying right now thinking about it...my mother treats me like "dont worry dear, everything will be fine".  I really need some help right now as I am having a really bad time...

thank you
Emma

[lola]

Emma  stay strong and remember your IHD family is Always hear for you, never let fear run your life. Your brother like alot of people are afraid for themselves and think someone else will be your match. Don't blame him as hard as that is, I have had to learn not to be upset at those close to us have not "stepped" up to even be tested for Otto thinking someone else will. Hang in there 

[KICKSTART]

Hi Emma , i havent got all the answers for you , but i do know how you are feeling .  I get treated pretty much the same , my mum carries on as if there is nothing wrong with me , i dont know if this is how they cope or stop themselves thinking about it. My brother might be a possible match , but i will never know ,as he said ..dont even go there .. i guess because we are walking round and not looking to bad , it doesnt seem an issue ? Dont  be scared of PD ( i do CAPD) and have done it for 2 yrs now. At first it will seem so daunting , my hands shook so much while i was learning it !  Now its just like making a meal .. have breakfast ..do dialysis ..have dinner ..do dialysis. You are going to feel like you are on an emotional rollercoaster , we all do . But here you can talk to anyone about anything , no matter how small or silly it may seem, the people here are so genuine and extremely helpfull and supportive ..this site ends up a lifeline honestly. Just take small steps and anything you are not happy about or sure of ..ask on here ..someone will help you through it !

[Laurie]

Hi Emma. I'm sorry your having a hard time. When I first learned I would have to start dialysis again I cried all the time. I was so upset and could not belive it was happening. It's been a few months and now I have accepted it and I'm ok with it. I have a husband and a 6 year old daughter and they really keep me going. I know I have to do whatever it takes to be around to see my daughter grow up. The thought of not being able to see my daughter graduate, get married and have a family breaks my heart. I can understand your feelings about your brother not wanting to donate. I have a sister and she has not even talked about being tested. I really wish she would be tested, but I've decided not to push the issue.  I will be starting PD training in a couple of weeks and I'm hoping after she sees what I have to go through, then maybe she will volunteer.

Hang in there. Things will get better 

[George Jung]

Emma (what a sweet name)

You will not be defeated no matter how you feel right now.  It must be extremely difficult to be in your situation, knowing that you will soon start dialysis to sustain life.  In a sense I souppose I am fortunate because I was suddenly struck with it, leaving me no time to really think about what is happening.  I don't know what would have gone on in my head if I had to know that in the coming days, weeks, or months I would be starting dialysis.

Family and friends are not always the support we need as they are in a difficult position too.  IHD is a great supplement.

I'm not really sure how I deal with it still (almost a year on dialysis), I think it is human nature to fight for your life.  Emotionally, I had to be involved in an activity where I am needed, did some soul searching, and focused on things I have controll over and try to minimize the things I do not.  IHD was a lifeline also.  You will find your way and all of us here will be around to share your ups and downs.  

Thinking of you during this tough time.  Please take care - George

[Ken Shelmerdine]

Hi Emma
Yes it is daunting and as Kickstart says it is difficult to make people understand because when they see that you don't look too bad you can tell they're thinking 'What's all the Fuss' But keep telling your self 'I can get through this' and try and be strong.

 Do consider PD. When the time came when I finally had to go on dialysis I felt so down and it seemed to knock my confidence for 6. I do PD using a Baxter Cycler and during training I was getting more and more depressed but it's a different story now. This form of dialysis is so unrestricting to my lifestyle. I just set the machine up when I get home from work (takes about 5 to 10 minutes) hook up to it when I go to bed and dialysis all takes place while I am asleep.

Of course it took a couple of months to eliminate quite a few teething problems like drain alarms going off all the time and some pain during drainage and it was during this period that I felt really down thinking that it would never come right but it has done and I think that's the story that most of us who are on PD on this site would tell you because we've all known how difficult it is to be optimistic when you feel so much dispair and frustration. So just remember, though you feel devastated now, it will get better sooner than you think it will, we've all been there and know what you're going through.  

[RichardMEL]

Dear Emma,

It's pretty tough to face the change in life that dialysis brings... but you WILL handle it.. because you have to.. for yourself and your family (specially kids).

It really changes your life certainly but you can still live with it....

As for your brother not wanting to donate... he could just be scared of the risks etc... unfortunately I guess all you can do is respect his decision because you really can't force someone to donate. At one stage I thought my sister was unwilling to donate to me and then all of a sudden she popped up and said she was willing to donate and went through the tests (only to be refused at the last step because of concerns over her health). It must be very disappointing to think that someone so close would decide not to  donate.. but it is a very personal choice and I guess all you can do, as I said, is respect that.

You WILL be ok.. it will take time to get used to.. and it is scary.. but plenty of people live with dialysis every day so try to remain positive...

[livecam]

Getting near dialysis and finally having to go on it is devastating.  First you feel progressively worse physically for a long time before you need to start.  I want to think that went on for something like 20-22 months for me with the last 9 or so being completely awful.

Of course there is mental anguish.  There are so many variables involved and we don't really know in the beginning how things will play out.

When it is time to start you might start thinking about how to make it end in a good way.  For me the answer was a simple one, to make it end in a transplant.  Now is the time to put your energy into getting listed for transplant and looking around at friends and family for potential living donors.  Keep yourself healthy and listen to your docs so you'll be ready when the big day comes.

You don't need to come out and ask anyone.  Just letting people know where you stand will make the right ones want to come forward and help.  Your brother doesn't want to do it right now but he is only one person, there are many more who very likely would.  I had distant relatives I hadn't seen or talked to in years come forward with offers to donate.

Just look around at this site and see all of the transplants that have happened over the past several months.  People who thought they were going to wait years got the surprise of their lives when the phone rang for them...and all of them are doing great!

It does get better...I know it will!

[EMMA]

hey everyone...thank you so much...i thought i was the only one with a close family member who wouldnt donate or a mother who lives ignorance...but it saddens me that i am not the only one!!!!  i keep thinking if the positions were reversed, i would have already given my kidney...to make matters worse, my brother is a Doctor!!! he knows what i will go through..anyway...i am trying to deal with this by controlling as much as i can...ie my diet and exercise///i was a vegetarian for the past two years,,,but i have decided thiat i will start eating meat again,...i have to have some pleasure for God's sake...thank you thank you thankyou...i feel like i have a lifeline and new friends...remember to always take care of yourself...

[okarol]

Hi Emma,
By the time my daughter began dialysis she was feeling pretty awful, couldn't keep food down, lethargic and sleeping a lot. The dialysis took some getting used to but she did feel a great deal better within days of starting.
I have a few people in my family that I thought would step forward to donate a kidney. It's a disappointment when nothing is offered, and you don't want to ask. But thank GOD for the kindness of strangers! Jenna's donor is a woman who just wanted to help another person. There are people like that, and hopefully one will come into your life. Best wishes to you. You have all the support here and we will help you however we can!
Take care!
 

[paddbear0000]

Emma, I know exactly how you feel and am in the same boat as you. I found out about 6 months ago that my kidneys were failing (very fast too). My mother just kept telling me that everything will be fine, and my sister doesn't want to donate her kidney to me, nor do any of my other relatives with the same blood type. My husband would be happy to donate, except he isn't a match. I struggle every day with the same feelings--One day I feel like I can handle everything and am brave, then the next day, I am in tears all day because I feel like I just want to give up. I will soon need to go on dialysis, and it's the bad days that I sit there and think, do I even want to bother starting the dialysis? I have struggled my whole life with unstable diabetes, the complications from it, and severe depression. I wonder if it's even worth trying to save myself. Then my husband comes home form work and i remember why I should save myself. We all have days like that. I have my husband to help me get through things, and I plan to have my doctor put me anti-depressants. I've been on them before, and know that they can be a big help. Just realize that your mother is probably in denial. Have you tried sitting her down to have a serious talk about how you are feeling? If she says "everything will be fine" again, look her straight in the eye, and say, no, it's not, and explain how you feel and what you're going through. Don't let her brush you off. Talk AT her (that's what I call it when people don't want to really listen to what you have to say) if you have to. I finally did that with my mother, and things are much better. If you can, try talking to a therapist. And keep your chin up!

[jbeany]

Hang in there, Emma.  I was terrified, too.  I started in December last year on hemo.  The first few months were really rough for me, but now I'm on home hemo on NxStage and I feel better than I have in years.  Read everything you can on here, and educate yourself as much as possible.  The more you know, the easier it is to deal with when things come up.  There are lots of threads on here that will tell you all about the pros and cons of the different forms of dialysis.  These will help you pick the one that will best suit you.  Remember that you are the one making the decisions - not the doctors! - and you have the right to demand the treatment that YOU want.  Expect to be scared and overwhelmed for a while - that's normal!  I was such a wimp at the beginning I got faint every time I looked at the needles they used for hemo.  Now I stick my own.  You will learn to adapt too! 

We're all here for you whenever you have a question, a problem, or just need to rant about it all!

 

[goofynina]

Hi Emma,  We have all been where your at right now, some have been on dialysis much longer than others but what is important is live your life to the fullest and do not let this damned disease get the best of you.   And what is this?  You say you have a new lifeline and new friends, oh no honey, we are FAMILY and we stick together and we support each other.  That is the one of the many beautiful things Epoman help create (Miss ya Boss) for all of us members, so remember, you are never alone and we are all just a keyboard away 

[EMMA]

Thank you so much everyone...being here in my house and thinking about what is to come has been extremely difficult...i have always been the type of person to just roll with the punches...but this is ko'd me....i never really grasped the severity of this illness...and it saddens me that others have to walk down this path...however, this new family that i am now a part of is beautiful...it is refreshing to hear such great advice and support from people who are actually living with and living through this...if i can ever do anything to help any of you, just ask and i will be there...

[MyssAnne]

Hey,honey.We have all been there, we have experienced those feeilngs and frustrations with our family and friends.  I felt the same way too, when I was told I would be starting dialysis. I'm a newbie, been on it now for almost 1.5 years.  I would heartily recommend nighttime dialysis, whether pd or hemo. Doing night time will make you feel more in control, that you DO have a life again! Trust us, you WILL feel better once you've been on dialysis for a couple of weeks. I know I did, and was surprised, I hadn't reallized just how bad I HAD felt!   

[EMMA]

i am definitely doing night dialysis..i get the catheter on September 26...i am worried because i have two small children (4&2)...i have tried to explain as much as i can in terms they will understand...we just am in the position like most of you that we are a little closer to death than the general population...i cant imagine leaving my husband or kids...and i am dealing with some guilt aswell as my family didnt ask for this...also, how do you explain to people you meet about the dialysis...i have told a few people and they just look at me with pity and i really cant stand that...i guess this is a process and i will get to acceptance soon...i have too!!

[goofynina]

i am definitely doing night dialysis..i get the catheter on September 26...i am worried because i have two small children (4&2)...i have tried to explain as much as i can in terms they will understand...we just am in the position like most of you that we are a little closer to death than the general population...i cant imagine leaving my husband or kids...and i am dealing with some guilt aswell as my family didnt ask for this...also, how do you explain to people you meet about the dialysis...i have told a few people and they just look at me with pity and i really cant stand that...i guess this is a process and i will get to acceptance soon...i have too!!

I dont see it as being closer to death than others, i see it for an opportunity to appreciate life and all its beauty and not take so much for granted.  Believe me, since i have been sick i have had a more loving appreciation towards life and those around me, some people go around life hating it and hating their jobs and hating their neighbors and hating this and hating that and can die in a accident, how sad that they had so much hatred in the last days of their lives.  There are people who live on dialysis for literally decades and outlive alot of siblings, friends or whoever.  So please dont look at this as a death sentence but just another obstacle God has putten out there for us to climb.  And as for explaining to people about dialysis, i have learned that some really dont care, they ask just cuz they feel they need to, that is why this board is so important (especially to me),  you all know what i am going through, what i am feeling like, i can rant and rave and you know where i am coming from (you even put up with my weird sense of humor)     I hope you understand what i am trying to say Emma, we are in this together 

[EMMA]

Nina and everyone...thank you for being there...i think i am shocked at how unprepared i really am for this...i knew for a long time i would reach this point and i thougth all my ducks were in a row so to speak..i know what you mean about appreciating everything i have,,,i try to think of it like this...some of my friends and family are married to people who drink or cheat etc...and they have their health; but i wouldnt change my life situation for theirs just to be healthy...i realize i would rather have 5 years in my shoes as opposed to 50 in theirs...

[paris]

Emma, I am so glad you found IHD because this will be a lifeline for you. As you are learning, people here are incredible.  Finally, I have people who understand how I am really feeling.
Because we don't look "sick" most people can't understand how we feel.  Relatives keep telling me how good I look because I have dropped about 50 pounds---not from trying, but from throwing up,lack of appetite, etc.  But they equate the weight loss with being healthier.  We were hoping for a pre-dialysis transplant, but with my anti-body problem no one is a match.  I am fortunate to have people offer this incredible gift and I have a great family.   Sending you good wishes and lots of hugs.  We will all get through this together.   

[del]

  Emma my husband's parents always didn't want to accept that he would have to go on dialysis. We knew 10 years before he started and had time to prepare but it was still hard when he had to start. I think it was harder for me to accept than him.  I was the one doing the crying. I wished it was me instead of him because he has had problems with depression and had a fear of doctors and hospitals. I felt like I would be able to handle it better.  He accepted it and made it part of his life. Has been hard sometimes but he has struggled through. He soon got over that fear.  It is hard to accept and you are not alone in feeling that way.  There has been nobody in hubby's family offer to give him a kidney - only me. His sis would but she had cancer years ago so they won't even consider her.  He has been on dialysis for 10 years now and has done really well on dialysis.  There were a couple of difficult times when pd stopped working for him but he has done really, really good on hemo.  When you do start dialysis it will probably take your body some time to get used to dialysis and that is normal.  Some people live very normal lives on dialysis.  You have to be the one to make dialysis a part of your life and not let it control your whole life.  Just because you are on dialysis doesn't mean you can't do the things you always did.  May have tomake some adjustments but it is possible to do all the things you normally liked to do.  I think the main reason hubby has done so well is because he has always watched his diet and the fluid redtrictions.  With nocturnal hemo there are very few restrictions anyway - not many with pd either.  There are a few options to the type of dialysis you do. Check them all out and decide which one would be best for you.  Choose a transplant if that is best for you.Hubby has been on pd, in center hemo and now home hemo nocturnal.  Working on his 11th year on dialysis now. There are people here who will always support you even though there are times when you feel you are alone. Only someone who has experienced kidney failure or been a part of the treatment process can really understand how someone facing dialysis can feel.      

[Bajanne]

Emma, I can only endorse everything the ones above have said.  The main thing right now is that you are not alone.  We are here for you all the way. I can't begin to tell you the difference that this community has made to the way I see and handle this challenge.  Take advantage of this website - it will definitely be a support through all you have to go through.
We are here for you.

[EMMA]

I must say, I look forward to coming to the site...it is refreshing to read all the successes and triumphs...this weekend has been a big turning point for me...at times i have felt desperate and others i feel i can handle this.  but slowly i am coming to terms with the realities of this situation.  it has been really hard for me to understand my brother not giving me a kidney.    if it were him, i would be right there,,,he would never have had to even go on dialysis.  but i know people handle and process things very differently...i will keep coming to the site and thank god it is here...i will do my best to be there for all of you aswell...that i can promise...em

[Sluff]

Hang in there EMMA.   

[RichardMEL]

Emma, just a thought on your brother... but please don't take anything from this more than a thought.. but perhaps when the reality hits of you being on dialysis and the impact it has on your life hits for your brother he may reconsider. It does seem odd given he's a doctor and all and SHOULD understand just what the implications are... plus he may also be scared JUST BECAUSE he is a doctor and knows more of the potential risks and so on of such a major surgery.... I have a feeling my sister didn't really click into gear on the donation thing prior to me being on dialysis because she didn't really understand what the deal was and how it would affect me.. but then she came and saw me in the unit, the needles, the machine, the 5 hour shifts blah blah blah... and realised how much this screwed my life over.. and I think that helped her decision making process.

Either way.. hang in there.. you CAN manage....

[EMMA]

i think you are right...i guess if i have a hard time handling it...well he probably does too...i am going to try to let this go as i want to stay positive...i think if i stress it is just going to make everything more difficult than it really needs to be...thanks to you all...emma