How did you feel when you found out you needed dialysis?

[dawn24]

Please share with me how you felt when you learned you were in kidney failure.  What were the biggest challenges?  How did it affect your relationships?  And when you started the process of dialysis what particular things were the most challenging or bothered you the most?  I know this is such an intricate, detailed process and, like grief, things someone wouldn’t even think of could affect the patient in an adverse way.  Was there anything that anyone said or did for you that helped you come to terms with your 'new life'?

I’m not in kidney failure, but I love someone who is . . . and even though he has shut me out of his life I’m still trying to learn all I can to understand what he’s going through in case he needs me down the line . . . right now he’s doing it all on his own.  So I’m just asking anyone who is comfortable to please share with me what you went through when you started down this path and how you evolved as a person.  Thanks in advance!

[MooseMom]

When I first was diagnosed 20 years ago, it was 6 months after my baby was born.  I was living abroad, and I had no family around.  I became depressed and started an anti-depressant.  I didn't tell my husband because not long after that, we began to realize that our son was quite probably autistic.  I hid all of my fears, and they were legion, from my husband because I didn't want him coming home from a long day's work only to find an depressed wife.

Our marriage ended after 18 years.  He was frightened and sad about our son, as was I, and we both thought we were being noble in protecting each other from our deepest fears, and the result was that we withdrew from each other...or at least I did.  The kidney thing was just a small part of it all, but I had this fear that I wouldn't live to see our son grow up, and I bore that burden alone.  It robbed me of that intimacy that is crucial to a marriage.

I am remarried now, and my new husband and I had less than a year together before we discovered how bad my kidney function had become.  Again, I find myself falling into the same trap, that of wanting to protect him from the intense rage and terror that I feel.  I'm not even on dialysis yet, but my mom was, and I've had all these years to learn about D, so I know the depth of the abyss.  But I have expressed my feelings to my husband on nights when I couldn't sleep and felt like screaming about the unfairness of it all.  So, I've progressed in that way, but I feel these things more often than not, and a loved one can only listen to this crap in small doses, so I still find myself bearing it alone.  I've never asked him to accompany me to any appointments, although he has taken me to the tests that leave me drained, and he has come with me to the pre-transplant listing stuff at the transplant center.

I am very mindful of what all of this can do to my spouse, so I try very  very hard to minimize the impact.  Once on dialysis, life will change for both of us forever, and I am not sure if he fully understands that.  I think he does.  I talk to him and ask him how HE is feeling, WHAT he is feeling, and he doesn't always say.  I don't know if it's because he is distracted by work or if he just doesn't want to think about it or if he isn't sure.  There are times when I am not fun to live with, but I am very lucky in that he understands as much as possible the weight that is on my shoulders, and he understands that it is a weight from which I will never be free.  That's the hard part...knowing you will never ever be rid of this thing.  It will always be there, and there is absolutely nothing you can do about it.  Nothing.  And unless you are the one who is sick, that particular absolute is impossible to truly understand.

PS...I just wanted to add that there has been nothing that anyone who doesn't have ESRD has said to me that has helped me accept my "new life".  I'm sorry to say that, and hopefully your bf is nothing like me, but I don't get any real comfort from anyone who is not experiencing what I am experiencing.  I know my husband will stay and will love me, but when he says, "Everything will be OK.", I have to retort, "You don't know that."  He is not the one who takes the pills or watches the diet or has to learn about dialysis modalities, so as far as I am concerned, he can't help in an intellectual way.  The only thing that will really help is to have this all go away, and he can't cure me.  So I look for people who have been able to thrive on dialysis, people who have had kidney disease all their lives and are still alive and happy despite it. 

In my very humble opinion, your bf needs to seek out people who can show him that dialysis does not mean instant death.  Maybe you could get him to look at www.kidneyschool.org; the more he understands about how to keep himself healthy, the easier it will be for him to come to see that life with kidney disease is, while overwhelming, still liveable.

From the posts I've read from you, he doesn't seem ready to reach out to you yet.  Just be there when he is.  Try not to push him and make him feel like he is supposed to be gracious and brave and accepting because that will lead to him feeling guilty if he can't live up to those expectations.

Good luck to you both.

[pdpatty]

I was scared and cried alot. ButI have a great doctor who was great  and nurses at center helped a lot.

[Cordelia]

Well, it wasn't totally a surprise. It was and it wasn't, if that makes any sense. I knew since I was a teen that I had polycystic kidney disease. I was told that in my 40s I would likely need a transplant. I didn't quite make it to the age of 40 before I had renal failure.

Although, when you're told at 19 yrs og age you have kidney disease you think you have your whole "life" ahead of you and don't really worry about your life ending.

Well, last August, almost a year to this date, I went into renal failure. I almost died. I was so sick, I was vomiting, couldn't eat or drink even so much as water if my life depended on it.

I went to the ER and it was confirmed that's what it was. I was in the hospital 9 days before I was discharged.

I was pretty upset, I felt a whole mix of emotions.........anger, sadness, depression.....scared out of my mind. We already had enough challenges at home with an Autistic son I felt angry I now had this kidney dialysis to worry about and face.   

My nephrologist said to me in the first week that my kidneys MIGHT reverse, well, I accepted at that point that it likely was not going to happen. I don't have good luck at the best of times....why would my kidneys, at less than 15 per cent functionable, reverse in a few months like he said they might. So, I accepted that and began dialysis.

I feel better now, having dialysis, I must admit. I have more energy on my non-dialysis days, thankfully. On dialysis days, I come home and need a nap desperately to function for the rest of the day. I don't work so sometimes that bothers me that I'm not 'making' an income .....thankfully my husband can hold the fort down financially for the two of us, plus the children, so that helps. I'm very thankful and lucky to live in Canada where the health care for my dialysis is covered, I don't have to pay for it.   

However, I needed to 'move' closer to my dialysis unit and that cost my family and I a sh*tload of money to put our house up for sale and buy a new home closer to my hospital. I took a major loss on my previous house to "get ahead"

Life is full of surprises, twists and turns and risks, it's a new adventure now being on dialysis and awaiting aproval for a kidney transplant.   

I'm totally okay with the dialysis now, I've accepted it that it's my life for now. I have lost 60 pounds since I started dialysis and I feel better for it! I'm a different person now!   

How has it affected my relationships? Bigtime. It's affected everyone around me, living with me. My husband, my 3 children. It's not easy, taking one day at a time is all we can do.  My Autistic son still sometimes thinks that Mommy is going to die, and that's the hardest. My husband and I have had our issues too.......we will make it through this, we are strong, I know we will. It will be a rough road but I have faith and hope we will make it through.

One thing in particicular I've noticed that with my spouse is that we are always there to lean on the other one's shoulder when one need to talk or cry. Just 'being' there for one another helps....some days are rough, hubby has a pretty stressful job, has me to put up with, we have three children, one being Autistic.........life is never  dull moment!!

The biggest challenge with my husband is that I think he is grieving the loss of what I used to be like, that is hard for him. God only knows I've grieved the changes I've gone though. Grieving not at the 'same time' in itself has its own challenges too.

I also live with my inlaws so there are challenges with that too. I know my life has changed forever because of my disease.  I must say the first 6 months drained me the most, getting used to the dialysis. I can only now recently see the more 'positive side' to it and have accepted it now, which makes me feel better for me personally.

[cattlekid]

I have known since 2000 that I had IgA nepropathy.  However, my creatnine was sitting at 1.2ish for so long that it was just a routine for me to get bloodwork every six months to confirm that the creatnine level had not changed.  Then something happened between September and December of last year that caused my creatnine to spike to over 9.  I was so sick – I had developed pneumonia and even after the pneumonia had cleared up, I was still so overloaded with fluid that I couldn’t sleep laying down and just walking through the parking lot into my office was a 20 minute ordeal of stopping every other car to catch my breath.  Like others said, I was constantly nauseated and didn’t eat for days.  Powerade Zero was my only friend in the food & beverage department. 

When I finally called my doctor to tell him what was going on, he told me that I was to meet him at 9AM the next morning at the hospital to have my catheter put in.  He had already done a biopsy in early January to confirm that the IgA had run rampant through my kidneys and they were scorched earth.  There was nothing at that time that we could do other than start dialysis. 

I was in disbelief.  However, I immediately felt 1000% better after the first two treatments there in the hospital.  My husband said that my color changed back to pink from yellow-gray within the first hour of the first treatment.  He also said that I went from crabby and nasty to smiling and joking. 

Now, after six months on dialysis and three potential living donors who have failed testing, I’m resigned to incenter D for the time being.  For various reasons, I’m not pursuing home D at this time and PD just will never happen for me.  So I look at it like it’s a shitty part-time job with no pay.  I’m not exactly what you call a model patient – I hate the emotional side of this disease.  I refuse to participate in the “morale-building” garbage at my center.  Just get me in and get me out and in the meantime, leave me alone unless I need you for something. 

As far as what others have to say, I get sick of all of the patronizing comments.  I’m not a hero, I’m not a role model, and I’m not on a freaking journey, thank you very much.  I just have a suck-ass disease and that no one understands unless they have it themselves. 

[Cordelia]

You just reminded me, Cattlekid. I remember pre-dialysis I was a really crabby person. I may as well have been called a b*tch LOL!

I wasn't sleeping anymore, had severe insomnia at night and was kept awake by violent leg cramps. Oh, those were so painful!!!!    The dialysis leg/foot cramps actually pale in comparison to those nasty leg spams/cramps pre dialysis!

[cariad]

What bothered me most was my husband's laissez-faire attitude toward donation. Donors have to show willing or they will not be donors, and I suspected that he did not want to actually donate. Maybe he really didn't, which would be unfortunate because he already has.

I also was extremely hurt that he did not seem to believe that the problem was with the system (especially the eval system) and arrogant doctors, and not me. He once told me that I was tanking my relationship with hospital after hospital on purpose, and because I could. You know, I am sure I was not the most pleasant person to be around at times, but I knew the difference between a good and bad doctor and resented that he seemed to want me to settle.

That being said, there were aspects, especially when it came down to exams and diagnoses, that I just did not want him to be around for. I am deeply private about my medical information, and for example, when I finally found out what happened to me to send me into renal failure, he was in the room and I just would have preferred that he hadn't been. Everyone is going to have their quirks. I did not want him to see me as unattractive or damaged or worse, and let's face it, disease is not sexy.

Is your significant other on dialysis yet? It sounds like you are not pushing him to talk, and that is most likely exactly the right response. Sometimes doing things by one's self gives a sense of accomplishment that cannot be had any other way.

[dawn24]

Not yet, he's having surgery monday to place the cath.  I'm not pushing him to talk at all, but just sending emails and text messages every few days and letting him know he doesn't have to respond and he usually doesn't.  He sounds like a lot of the responses here . . . cranky, crabby, feels like crap.  He's been vomiting a lot the past few months and his appearance has really changed too.  I still think he's the cutest thing ever though 

[jbeany]

He may be so overloaded with toxins at this point that he's not thinking clearly anyhow.  It took me about a month after I started to feel like my brain was back in some semblance of working order.

I had 9 years between being told my kidneys were failing and having to start D, so I think it kind of crept up on me.  There was the constant, gradual adjustment to the fact that my life and my health just seemed to be getting worse and worse.  I spent a lot of time grieving what I was losing, as my health got worse and worse.

[Cordelia]

You are a wonderful person to stand by him.  Sounds like he's in stage 4/5.  I hope once he starts D he'll feel better physically. I did. Unfortunately, it's the emotional that takes longer to get used to, at least it was for me.

Yes, the toxins will do that, will make you a completely different person, I know it did  for me. I think it took me months to feel like my old self.

[cattlekid]

Even though my creatinine didn't show it, I think that I was steadily on the decline from about February of 2010 onwards.  I was having debilitating migraines every couple of weeks and generally felt like crap.  It was the kind of thing that creeps up on you - one symptom here, one symptom there and nothing seemed too terrible until the roof caved in during the fourth quarter.  It's amazing how crappy one can feel without being "sick" - kind of like the analogy of the frog in the pot of water....put a frog in a pot of water and slowly turn up the heat, he won't jump out until it's too late. 

[MooseMom]

As far as what others have to say, I get sick of all of the patronizing comments.  I’m not a hero, I’m not a role model, and I’m not on a freaking journey, thank you very much.  I just have a suck-ass disease and that no one understands unless they have it themselves.

Thank you.  I'm not on a freaking journey, either.  Being called a "hero" or "brave" or a "role model" by people without this disease is code for, "Thank God it's you and not me."

Cordelia, I did not know you have an autistic son.  How old is he?  How is he doing?  PM me if you'd like because I'd love to hear more about him.  My son is 20, so I've been through the childhood years; maybe we could exchange war stories.

Dawn, this transition onto D is so very hard.  Nothing will convince you that you will be able to live with D until you are actually doing it and see for yourself.  Even when you read stories like the ones on this thread that show how people come to terms with it, there's still this nagging doubt that you will be the exception, that YOU will be the one for whom D just doesn't work and that YOU will be the one that will have every infection and side effect known to the renal Gods.  A partner cannot say, "It will all be OK" because you can't honestly make that prediction, so don't go there.

And other posters have pointed out a very critical thing, and that is when you are so sick that you need dialysis, you are not thinking straight because you are SICK on top of feeling fear and whatever other emotion is searing your soul.

[jbeany]

  Being called a "hero" or "brave" or a "role model" by people without this disease is code for, "Thank God it's you and not me."

Amen!

[dawn24]

Thank you for sharing your insights and experiences.  I DID tell him that, to try and hang in there with me for a few months because he's not thinking clearly and will start to feel better once all the toxins start to get out of his system. We've been together for a year, known each other 24 years.  I watched his health and happiness decline rapidly starting in April.  He was stage three in May 2010.  Stage four May 2011.  Hit stage five last month.  He's grieving his Mom on top of that, and I DO know how grief also muddles your thinking.  At this point I'm just trying to understand what it is like to get that news, to take this next step, because being in kidney failure is not something I can understand first hand and I just want to be there as much as I can.  Even though he's not talking to me 

[Cordelia]

Thanks for your offer Moosemom       I just might take you up on that offer!       My son is 10. There are good days and there are......bad days.   Maybe I can get some tips from you!   

Dawn, I don't think kidney disease is meant to 'understand' so I'm finding out too. It is so very complex, with so many faucets. It affects everyone in the family, not just the individual 'living' with the disease.

Don't give up on him.   

[MooseMom]

Dawn, to echo Cordelia, I think you may have to face the fact that you will never fully "understand".  But then again, you don't have to.  How many men "understand" what it is like to be pregnant and go through childbirth?  They can read all about it.  They can attend prenatal classes with you.  They can video the birth, but can they ever really "understand"?  No, but that doesn't mean that what they CAN do has no value.  It's the same with this or with any trauma that one person faces that can't be really shared.  So, while I certainly admire your desire to "understand", and while all of our stories are the stuff of movie scripts ( ), we are not HIM, so our stories will give you some idea but will not give you any instant insight into what he is dealing with (or is NOT dealing with).

I often ask myself, "What do I want from my husband?".  He will come right out and ask me, "What can I do to help?", and the answer is usually, "Nothing."  There is little anyone can do except to just let the person know that you are then for when the time is right.  I wish I know what anyone could say to make me feel better; I tell my husband, "If I knew what would help, believe me, I'd tell you."

Don't let him push you away as long as you want to stay with him.  Don't make any big decisions until he has been on dialysis for a while and until it becomes routine.  Sometimes you just have to weather the storm.  Sometimes you can't do anything except to batten down the hatches and hold on, and I suspect this may be one of those times.

[Ang]

how people handle dialysis is a mattter of choice i think,and every individual is different.

you either adjust to it or spend your time getting out of the proverbial black hole.

i was diagnosed with pkd some 14 years ago, it took about 9 years  to dialysis, then the neph said time to go.

panic set in as i had done no education of this disease,for the few months ahead was the time it took me to get my head aound that this was me for the forseeable future.
my main motivation to stay above water was my wife and young daughter
when i least expected it a transplant passed my way nearly ayear ago
hope your bf comes around really soon

[Cordelia]

I had no time to "think" about dialysis, I just fell into it, literally. I was dying and went into ICU first, got stabilzed before I went up to a ward. That was hell in itself. By the time I was stabilized, I was listening to some other woman puking in the bed next to me for the next week.   

I think you are so right Ang, It's how people handle it, everyone is dfferent. There is no wrong way or right way.   

Moosemom, I tried Pm'ing you and I can't, the site won't let me     Perhaps you could drop me a line instead and then I can PM you back. For some silly reason I can only reply to those who private message me, but I can't private message out first, I don't understand.

[jbeany]

Cordelia, how many PM's do you have?  The box has a fill limit, which might be messing things up.  If that's not it, post a thread in the tech help section, and one of the admins will see what they can do.  Also, have you tried clicking on MM's (or whoever you want to PM) profile and using the PM option that shows up there?

[Cordelia]

Hi JBeany, I have 9 saved messages and it says "9 per cent full"

I even tried deleting them and I can't for some funny reason.   

I have even tried clicking on people's profiles and I do get the little window that pops up saying "private message" but.....when I click on it, it disappears and it will not open       

I'm just about to head to bed now (getting up at 6 am for dialysis comes early) I will definitely post a thread in the help section tomorrow after I'm done my D session and nap. 

Thanks so much for the suggestion, JBeany,       hope I can get some help with it     
Must be a glitch in the system for me.   

[jbeany]

Okay, no clues from me then.

We now resume our regular programming.........

[kristina]

When I was told on 20th August 2006 in Accident and Emergency
that I was in ESRF with a kidney-function of 18%
and only 6 months to go until Dialysis,
my first reaction was total shock and trauma.

I felt cheated, cheated and cheated again,
because I had seen doctors/specialists every three months
for blood-tests (including Creatinine) over many years
whilst my Creatinine was rising without any doctor bothering about it.

What was the point of going to doctors to prevent kidney failure
when they were not even professional enough
to notice my deterioration ?

This experience completely changed my attitude towards doctors and specialists.

No more did I rely on their (so-called) professional expertise.

So, whilst still in shock, I jumped on a fast-learning-curve
to find out as much as I could about survival in ESRF.

The shock and trauma have eased now,
but my resolve not to trust doctors has hardened,
and my focus on my own health and how to manage it
has become sharper and sharper.

I still remember the shock I had when being diagnosed with ESRF
and that will stay with me and I shall not ever forget
how my trust in doctors was so terribly misused
over such a long time, again and again.

Through my own efforts I have kept so far pre-Dialysis
and I am managing to maintain a kidney function at around 10-12%
without Dialysis – yet.

Best wishes and good luck from Kristina.

[dawn24]

 

What I'm hearing is a lot of feelings of anger and isolation.  Not good, since he's always been a loner anyway . . . .

[Cricket]

I found out I was in kidney failure June 10, 2011 after routine diabetic bloodwork.  In hospital 12 days, thrown into dialysis for 4 hours alone... and then fell into the blackness of depression.   Felt suicidal, did not want to live another day.
They put me on depression meds; anxiety meds.  Still get panic attacks at the center during the 3rd and 4th hours of treatment.
I have an apartment full of books, pamphlets, etc.  All that crap.
It does not bring my life back, my activities, my freedom.  And so on top of managing my diabetes (4 shots aday since the age of 14 (I'm 57), I have this to deal with.  Somehow, it isn't fair.  All that discipline did NOT pay off.

Im in grief for my own body, feel cheated about the loss of "real life".  I can't seem to win. 

[dawn24]

I found out I was in kidney failure June 10, 2011 after routine diabetic bloodwork.  In hospital 12 days, thrown into dialysis for 4 hours alone... and then fell into the blackness of depression.   Felt suicidal, did not want to live another day.
They put me on depression meds; anxiety meds.  Still get panic attacks at the center during the 3rd and 4th hours of treatment.
I have an apartment full of books, pamphlets, etc.  All that crap.
It does not bring my life back, my activities, my freedom.  And so on top of managing my diabetes (4 shots aday since the age of 14 (I'm 57), I have this to deal with.  Somehow, it isn't fair.  All that discipline did NOT pay off.

Im in grief for my own body, feel cheated about the loss of "real life".  I can't seem to win. 

    You sound just like my DBF.  His was caused by the diabetes as well.   I feel like this post could have been written by him.  I hope you can pull out of the black hole but do understand why you are there    And if you can think of anything that I can do to help my man through this I'm all ears