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

[malaka]

I just got the "news" yesterday from my consulting/second opinion nephro at a local university medical center that my recent biopsy shows scarring and advanced disease.  She was honest enough to tell me that there was no reasonable therapeutic alternative to dialysis or transplantation other than some experimental hormone therapy (IXXX----I forget the name) that would cost me only $180,000 for a six month course.  No thianks -- I'm not going to bankrupt my family for the chance of disease remission. 

Actually, this was merely confirmation as I knew I wasn't getting better and cratinine/eGFR showed a bad trend.
My wife, who was with me, seemed to take the news worse than I did since she's more prone to believe what she hears from the doctor. 

Nobody knows how long before I need to start dialysis.  The worst part for me is this uncertainty.  But seeing the billing/appointment sheet filled out by the doctor say "Stage V CKD" sort of drives home the idea that my current life is just about over and I'll soon be tied to the machine and its schedule.

[MooseMom]

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

Yep, that's pretty much it in a nutshell. 

One can actually do quite a lot to rid oneself of the feelings of isolation, but it takes work.  Sites like IHD are a tremendous help.  You have no idea how many people have posted sentiments like, "Thank God I found this site and can talk to people just like me.  It makes me feel less alone."   

A lot of people complain that others "just don't understand".  Well, in a way, that's a good thing.  People don't really care that much about your dialysis or your potassium and phosphorus levels because they have their own problems, and the fact that others don't care means that you CAN go out into the real world and have a normal life.  People might say ignorant things to you, but who cares?  Many, many, MANY people have chronic conditions or spouses with chronic conditions or kids with chronic conditions or aunties with chronic conditions, so your bf's chronic condition isn't going to shock anyone into a state of horror.  He'll just be one more person with a chronic condition.  Of course, if you feel sick because you are not getting good dialysis, then you won't want to be the life of the party, that's for sure.  ESRD CAN be a very isolating experience, but if your bf can dialyze at night, he can have his days free to make any kind of social contact he wants.

As for the anger, well, I can't give you advice on that because I am still struggling with that.  But I remain angry that my son is autistic, so I am well pissed off in general.   Challenges like ESRD will serve to magnify the qualities that are already wired into you.  I don't think ESRD will magically make you courageous, but it probably will unleash wells of courage you already had without realizing it.  If you are by nature a happy person, you will find that ESRD, like most bad things, will have a silver lining and you will likely "learn" something about yourself, blah blah blah.  But if you are wired to be on the pessimistic side, nothing about ESRD will suddenly make you start seeing the glass half filled.  Instead, you are at risk for plummeting moods.  And if there is a streak of anger and resentment running through your soul, you will have to fight to keep things in perspective.  That's where I am.  ESRD isn't going to make me a happy, sunny person, so I understand that it will be a constant battle to keep my rage under control.

ESRD isn't going to change who you fundamentally are, but it will shine a very bright light onto the positive and negative aspects of your personality.  At least, that's what I have found about my situation.  Others may have a very different take on it.

[MooseMom]

I just got the "news" yesterday from my consulting/second opinion nephro at a local university medical center that my recent biopsy shows scarring and advanced disease.  She was honest enough to tell me that there was no reasonable therapeutic alternative to dialysis or transplantation other than some experimental hormone therapy (IXXX----I forget the name) that would cost me only $180,000 for a six month course.  No thianks -- I'm not going to bankrupt my family for the chance of disease remission. 

Actually, this was merely confirmation as I knew I wasn't getting better and cratinine/eGFR showed a bad trend.
My wife, who was with me, seemed to take the news worse than I did since she's more prone to believe what she hears from the doctor. 

Nobody knows how long before I need to start dialysis.  The worst part for me is this uncertainty.  But seeing the billing/appointment sheet filled out by the doctor say "Stage V CKD" sort of drives home the idea that my current life is just about over and I'll soon be tied to the machine and its schedule.

Oh man, I have lived this.  I really do know what this feels like, and it is horrible.  The uncertainty is crushing.  And yep, seeing the "CKD V" label on your records is like a punch in the stomach.  And yep, seeing a future with a dialysis machine in it, and being able to do NOTHING to stop the oncoming train, leaves you with a very bleak feeling.

But that's when I remind myself that if others can lead a good life on dialysis, then by God in Heaven, I will too.  I may be tied to a machine, but it's going to be on my own damn schedule, so everyone on my medical care team had better give me what I want, which will be home hemo on NxStage at night while I sleep.  None of this inclinic business for me, thank you very much.

I really do feel for you.

[Cordelia]

Moosmom, I feel for you, dealing with Autism let alone our disease, is so hard. It's not easy. It's stress upon stress in the home so I'm finding out.    to you!!

[tbarrett2533]

When I found out that I needed dialysis..... all I did was cry... depression sunk in, I was alone (no family that cares) scared, worried, and just a mess... I will be a year in September 23, 2011 and I still have not accepted it yet making me very bitter and pissed off!!!!
I recently just started therapy with hopes that I can learn how to accept my fate.
I am beyond tired of people telling me that it can be worst b/c my life has completely changed and def not for the better b/c of kidney failure!!!

All my plans, and dreams are gone now.... I did everything that I was "suppose" to do in there order I was "suppose" to do it in.... I went to college, and started my career..... waited to get married and have children until I was settled into my career and then kidney failure came along and now I will prolly never get married or have children and as far as my career goes..... its pretty much done for now b/c I am just too worn out to work now.......
Looking back, I should of said the hell with it and never went to college, and at least got pregnant earlier so I would have a child.... but who knows what their future holds
so I am pissed off....... really friggin mad that I have kidney failure!!!! 

[Lovebelle]

I actually didnt have much time to process the information. I just found that my kidney were failing through routine labs. First they thought maybe lab result was an error because previous labwork was always normal. And then after repeat labs I was admitted to hospital and started dialysis the same day. It felt pretty tramatic. One minute Im seeing my patients and the next Im in a hospital getting an emergency catheter and then shortly after that told Ill be going to surgery in the next couple days for a fistula and PD catheter.

In was all in that short period of time that I began searching the internet and found this site. And it wasnt until the first time I sat in that Dialysis chair that first day that I realized my life was going to change. I remember thinking at first, wow this is so weird but not so bad. Until that first cramp set in and my legs seized up. That was the first time I actually was tempted to cry because I was worried it would be like that all the time.  I was in the hospital for two weeks and I received Dialysis 12 out of those 15 days. I dreaded every single session. But the dialysis staff in the hospital were wonderful, and to this day I always defer back to them (over my dialysis center) if I have questions or honest feedback.

I had to educate myself very quickly and that was hardest thing to do. But the one thing I was grateful for was the support of family and close friends. They were a bit overwhelming and there were times I was sick to death of all of them and all the freaking questions. But I knew they loved me. I think I went through the stages of grief very slowly and am still working through them (10 months later). I also think we move throughout various stages on a continuing basis. Today I am at acceptance. Tomorrow I may be back at Denial

 I hope your friend comes around sooner than later. We all cope differently and I at times isolate, like he does and think I can do it on my own, but in the end we need people surrounding us. I admire that you are taking steps to educate yourself for when he is ready.

[RichardMEL]

I think this is going to be a bit of a long post. Sorry!

I was diagnosed in 1993.

Prior to that, I did a medical when I first got a full time job. It was routine - or so I thought.

Anyway they told me I had protein in the urine. I was like "so?" Well they sent me off to a neph.

Now the guy i saw was a HORRIBLE MAN!!!!! We sat down and his first sentence basically was "You've got two years."

I was like what?

Luckily my mum was with me, and as a hospital chief social worker, she was appaled.... and she happened to know a really good neph who she worked with (now prof of medicine) and talked to him, and he agreed to take me as a private patient. A lovely man absolutely fantastic.

Anyway the point is I had an initially rude awakening if you like - because it was a shock. I didn't know if I had two years to live, two years till total kidney failure... or what.

Well as it turned out, I lasted 13 years till I had to start D. So I stick that up Dr Horrible!!!!!

So my point is, that after the initial shock, I had a LOT of time to prepare myself emotionally and physically (I had my fistula 2 years before it was first used) and moved to an apartment across from the hospital/dialysis unit etc. So, I think I prepared pretty well. Plus the renal dept put on seminars to help educate patients pre-D, and then pre-transplant.

I don't know that I felt angry so much, or "why me?" or anything like that when I was first diagnosed - even with the "rude introduction" I had. I suppose I've grown up with having to struggle because of my always poor eyesight, so I guess I just saw this as another challenge or perhaps a crappy thing that life threw at me that I just had to deal with. I guess I've always felt you have two options in life when dealing with bad stuff that happens to good people. Curl up in a ball, get depressed, cry "why me?" or get angry and lash out. Seems to me all of those things don't actually *help* the situation. The other option is to try and make the most of a bad situation. I've always tried to do that.

Don't get me wrong folks - I've had my bouts of crying and feeling annoyed with the unfairness of it all over the years, but usually they would be over pretty quickly. When I realise I'm being like that I try to remind myself that being down in the dumps doesn't help anything.

When I started D - because I had so much warning... I obviously had a few years of anxiety building as every 3 months or whatever having labs to figure out when would be time to start, so it was nerves for each time I saw the doc for results. When the time came, and I got the call saying "OK you're starting on so-and-so date"(about 3 weeks time). I was pretty much ready. Actually starting I was more curious as to the actual procedure and what would happen, how it would feel - which the seminars could only help with so much.

I think I handled it pretty well. My first session had some scary bits, but I think I got through it, and soon settled into a routine - it really helped having very supportive staff who helped me understand what was going on, and why and that really helped.

Well that's just my two cents anyway.

[monrein]

ESRD isn't going to change who you fundamentally are, but it will shine a very bright light onto the positive and negative aspects of your personality.  At least, that's what I have found about my situation.  Others may have a very different take on it.

I think this is right on the money.  For me, I'm a very practical person and have always been pretty realistic.  Even as a kid, my ambitions for myself were based on my strengths and weaknesses rather than on my "dreams".  I'm also a firm believer that one can do something, even overcome huge obstacles if one has the will, the determination and sometimes a bit of help to do so.  I think that how a person faces or deals with things, especially difficult things, is therefore a function of personality and personality is often shaped by one's previous experiences in the world...trust is a good example.  If one has been "betrayed" (or even perceives they have been badly let down) then mistrust will often lead the way and can get in the way of things or people that could maybe be trusted.  On the flip side if one feels a sense of trust in the world at large, even if one HAS been let down in the past, this perception can allow one to believe that people can be trusted and this naivete could result in misplaced trust. The truth of the matter of course is that trust is often justified but that betrayal is also a common fact of life. 

I tend to trust the world but I'm cautious and skeptical as well in addition to being practical.  So when I had to go on dialysis (at 26) I felt let down and grieved the loss of many things...my career goals, my desire to have children, the type of marriage I had at the time, my intense love of travel to far flung exotic places and so on.  BUT, my practical and indeed optimistic side kicked in and without becoming PollyAnna, I began to focus less on what I'd lost (certainly not on what I'd gained because I don't think one gains anything by the imposition of a horrible event even though in the final analysis one can point to some lessons learned perhaps) and more on what I could still enjoy or achieve.  I wanted to take control where I could since so much was ripped away and out of my control.  I wanted to limit and control as much as possible, the ability of ESRD to infect every area of my life since it already took up so much time.  And I wanted to be mentally prepared for the worst outcome, all the while expecting/trusting/hoping for the best outcome.  I cried when I had to and quite frequently had to.  I tried to laugh and have fun as much as I could and that happened too.  I tried to talk to people who seemed to care and understand...some did, some didn't...knowing, practically speaking, that even people who are similarly affected won't be identically affected since all of life's experiences are like that.  No two people experience things in exactly the same way...but I believe in trying to understand the experiences of others and think that the efforts of others to understand mine are valuable enough to count .
How I felt then and how I feel now are all part of the same continuum and very much depend on my personality.  Back then I felt lucky (and still do) to have moved to Canada and not have been still in Jamaica (or even in the U.S. where my family was since I'd have been a huge burden on them), to have met the people I did and so on.  I still occasionally think about how my life might have been different without ESRD but my practicality quickly moves me on as a rule to wanting to focus on what I have rather than what I wanted to have.  Did I mention I was stubborn too?  I am.  I often think about the fact that had I been born at another time I would have been dead at either 8 months old when all this began or at 26 when I needed D.  I turn 58 this year and I've had a pretty good life so far...not perfect, not what I'd have laid out for myself but certainly worth participating in.

[tbarrett2533]

  the idea that my current life is just about over and I'll soon be tied to the machine and its schedule.

I could not have said this better myself and feel exactly like this!! EVERY SINGLE DAY OF MY LIFE!!

[cariad]

Have people really been called a role model or a hero? How strange! That's a bit melodramatic I'd say.

I was never called any of those things... maybe brave, but it does not matter to me if it is renal patients or someone else who says it, I take it as a compliment. Mostly, when I told people about the transplant before the fact, I heard very supportive comments like "Wow, that's a lot to deal with" or "Let us know if we can help". When I went through mad creatinine fluctuations and called my neprhologist in tears, the receptionist tried to help with a lame "Oh, don't worry. It will be all right." Not everyone is at all skilled with highly emotional situations, so she said what she thought would help me calm down. Of course it is the wrong thing to say, but it did cheer me up, just because it was funny to me how clumsy and sweet the whole attempt was. So, I guess in a weird way, one could argue it was the perfect thing to say.

I did cry after my line was placed for dialysis and apheresis. I was also very nauseated, coming off the narcotics, had to see my husband have a neck line placed, and had just gone through a heated and drawn out battle with the doctors who wanted me to go through a tunneled line placement without any anaesthesia (to make their lives easier, not mine) and was feeling a tad beaten up. I saw myself for the first time in the hotel mirror and just muttered to Gwyn that I looked so ugly and he answered "You're beautiful... and strong."

I have to tell you, by the end of the month I wanted a photo of myself with that line in place. I never did get it taken, but I wanted some record that yes, I survived this. I felt a lot of pride in that scary, uncomfortable, painful, and dramatically bloody set of lumens hanging off my chest.

It helps that my husband essentially went through everything I did, the difference being that he did not have to and did it anyway. I try to tell him every time someone on here, or someone out in the world says he's so brave and heroic. He does not seem to mind.... 

[MooseMom]

Usually it's a comment like, "You're so brave; I don't think I could cope with that."  I heard that a lot regarding my son's autism.  I always heard implicit, "There but for the grace of God go I."  As for the kidney stuff, I get a lot of, "You sound so good.  You have such a great attitude," which is so untrue that I've been known to be shocked into silence.  I was buying a CD last year and asked about the bank's policies on early withdrawal.  I explained that I would be starting dialysis soon and that I might need that money earlier than anticipated.  (I then went on to make my speech about how I was on the waiting list and was hoping to find a living donor, and did you know that living donors are heroes and blah blah blah.)  The bank lady told me how much she admired my optimistic outlook, and I realized she was projecting something or another because as I was explaining all of this to her, I certainly wasn't feeling optimistic.  People see what they want to see, and what they usually want to see is affirmation that their life isn't as bad as that of the poor sod sitting in front of them.

If someone who really knew me told me I was brave or a hero or some such thing, I'd feel complimented.  But for someone who barely knows my name to imply they just know I am so brave is annoying.

[Cricket]

Hi Dawn.  Thanks for writing.....
If it's any comfort to me (or your man), at least we share the same emotions, an we are not crazy.  Or are we???    You do everything right regarding diabetes.  Stay disciplined.  Accept the hardships, be brave.  But - what for?  To inherit yet another set of rules? Another box of kleenex when there are no answers to be found?
My diabetes destroyed my parents' lives when I was 14; now, at least they're not alive to see what's happened to me now............ but I have one surviving sister (a widow) and my kidney failure has destroyed her as well.
I fee so guilty, I cannot tell you!   
I had an awful session yesterday and I'm not over it yet.  It was delayed - no reasons given at the center - a missed meal, a missed injection, and today I am totally wiped out.   
Give me a holler any time you want - I'm always at home if I'm not on the machine.   
Cricket (Chris) xx oo

[Annig83]

I have had Nephrotic Syndrome since age 13, and dialysis was always mentioned, so I "tucked it away" in my mind and followed what I needed to do, as my Neph. described, and was overall, generally healthy, until I got pregnant last year.  I was told by both my Neph., GP, and OB/GYN, that I couldn't get pregnant because of my kidney disease, and ovarian cysts, I never had a normal cycle and my hormone levels were always off.  They had just started me on a progesterone only birth control for the cysts as they had become very painful...and lo-and-behold, I got pregnant with my son Carson!! I guess the birth control wasn't as effective as they thought, and I guess 3 doctors were stumped that I actually could get pregnant! LOL The pregnancy was so hard on my kidneys that my creatinine went from 3.3 to 8 in one week.  My BP went from 120/88 to 150-170/100, and my functioning went from 30% to 8%.   I knew the risks of having my son, but I wouldn't have it any other way.  I "untucked" dialysis from my mind the minute I knew I was pregnant, so in a way I was "prepared" in the sense of knowing I would have to be on it.  I wasn't prepared for 4 surgeries to fix my cath for PD, nor the 1 1/2 month hospital stay due to my son being 3 months early, 3 blood clots in my right arm, and having those mult surgeries...was it worth it?  TOTALLY!!!

[billmoria]

sorry all non caps- typing with one hand.
my doc told me ten years before renal failure and told me i would end up in dialysis.
me and my partner looked it up on google. i did not like what i saw. i determined to live my life as normally as possible. my partner, dave, has a genitic problem, he has been on crutches since he was 20 (now 44). he knows he will end up in a wheel chair. he is in pain every day sometimes light and other times much worse. he has been my rock and i wish to be as strong as him which i can never be but i can aim to. the last few years before dialysis were horrible. my kidneys quit while we were on holiday in ft lauderdale. how i got back to the uk i don't know. i was on dialysis inside a week. i was determined to be as possible. i think of fellow dialysis pals as friends and along with doctors and wonderful nurses we make up a small group.
dave has been a rock from day one. at the royal london hospital we were given a small blue booklet and on reading it dave proclaimed " this has been your life for the last few years." i wish now i had started dialysis earlier......
despite this sites name i can easily that i love dialysis. life has been better since i started dialysis.
our relationship has not suffered, if any thing has grown stronger. we share every thing. the ups, the downs of life are an open book for both of us. i did not think we could love each other more but we do.

protect your fistula.   

[RichardMEL]

I've had people (both on here, and IRL) tell me they admire me and my attitude which is quite embarassing at times. Some nurses in my unit used to claim I was a "model" patient, but not sure how serious that was lol. Either way I just feel like I am an ordinary guy struggling with this disease just like anyone else here and trying to make the most of it. I've never been called a hero and if anyone wanted to suggest that I'd laugh out loud - puhlease... I would look shocking in tights!!! 

I want to go back to the comment by malaka (isn't that a naughty word in Greek?) about their life being over and the future is tied to the machine and the schedule. I REJECT that notion!! Not the poster, but the idea!

For me, life is for living, and it was NEVER about dialysis!!! I did dialysis to LIVE, not live to do dialysis.

Yes, absolutely, it involves restrictions in a number of areas - time, travel, diet, etc... but it also keeps us around to do the things we need or want(in most parts) - see family and friends, be involved in relationshjips, for some to work, to generally contribute to society and lead useful lives.

Don't get me wrong, that is a general statement. I fully well know for some, specially older folkd with other conditions, that ESRD and dialysis can take you to a point where one would have to question the line between qualiuty and quantity of life... but I'd like to think for the vast majority dialysis DOES allow a quality of life... lower than normal for sure, but it does. And let's face it - WITHOUT dialysis your liufe really woud be literally over.

I did over 4 years of dialysis which kept me going until my gift which is still very new to me and trying to get my grips around to live without dialysis.

I also like to think that, though I KNOW I will face dialysis again in the future - hopefully years off but who knows - that I will still remember this and know that it is technology to keep me alive, and generally well enough to live my life.

Again, try and make the most of what you have and find the positives. That's my mantra. Not always easy I grant you, but certainly better than the alternative in my view.

[jbeany]

Have people really been called a role model or a hero? How strange! That's a bit melodramatic I'd say.

A role model, a hero, an inspiration...blah, blah, blah.  Who was it on here that just said that's really code for "Better you than me."?  I don't want to be anyone's inspiration - I just want to get on with having a normal life.

[flipperfun]

It seems my story started in a similar way to RichardMel.  "Anyway they told me I had protein in the urine"

I have had Rheumatoid Arthritis since childhood and have always had regular check ups.  On these hospital visits I was told I had that dreaded word "protein in my urine".  I had no conception what that meant at all.  This went on for over 2 years before I was sent for further tests only to be told your kidneys are failing you have less than 6 months.   Disbelief, anger, denial you name it a whole glut of emotions came and went every day.  I tried to read up on it, got scared and kept closing down my computer.  If anyone mentioned that word 'kidney failure' I would burst into tears.   Three years later I started dialysis.  I have a very good Nephrologist who let me put off the dreaded day, and in my heart I knew I couldn't postpone it any longer.  I was unwell every day.  Horrible

I was amazed and pleasantly surprised how I felt after dialysis started, no more throwing up in the mornings or feeling sick at the smell of food.  It took quite a few months to feel better but I did.  The first year was hard, loads of lows and highs with blood pressure problems and repeated chest infections.  By the second year that too was sorted out, and I am pleased that I DO feel better generally.

Nothing helped me to come to terms with starting dialysis, I was terrified and had it in my head that people only last 5 years on dialysis.  Complete bunkum!  And I don't want to die.  I suppose I am now resigned to this way of life and, as long as I feel well, I cope better.  I am still scared stiff of dying too soon and have become too maudlin at times.  But if I am honest, it is not dying that scares me but being ill, vegetating, not able to live any kind of life.  My holidays abroad have been a fantastic source of pleasure, a little bit of normality.  I never knew dialysis patients could still go abroad on holiday.  Now my attitude is better.  I look on my dialysis days as a temporary blip in my life.  Nothing more. I really look forward to being 'normal' for me on my non dialysis days.  Only the liquid restriction really gets to me at times, apart from that, I am now on an even keel.

I am still angry though at the Rheumatology Unit for not picking this up earlier despite my regular check ups.  Would it have made a difference, I don't know and I no longer waste my time nor energy on something I cannot change.

This website has been my saviour.  I thank you all for your honesty, warmth and humour.

All the best everyone - Denise

[cariad]

Have people really been called a role model or a hero? How strange! That's a bit melodramatic I'd say.

A role model, a hero, an inspiration...blah, blah, blah.  Who was it on here that just said that's really code for "Better you than me."?  I don't want to be anyone's inspiration - I just want to get on with having a normal life.

I think I was called either brave or a "real pioneer" by a woman who went through the exact same clinical trial I did. We were maybe 4 months apart? They had changed the classification from a phase I to a phase II trial in that time, however, and so she felt it appropriate to give me more credit than herself. I think it is the instinct to self-deprecate in order to boost someone else's ego that drives most of these people. I was also called brave for running away to England with Gwyn, and for going on honeymoon in Africa. I don't think it is sinister code, I think it is an honest "I don't believe I could handle that" or "I would never choose to do that". I truly do think that the vast majority of people are speaking from a sincere and sweet place, trying to tell you that they admire your perseverance, or in your case, jbeany, your 'asbestos gelos'.

Now, my aunt, she has some sort of tact deficit, though she is such a lovely person. She used to say to me everytime the subject of transplant came up (and she would bring it up, because her brother was a transplant drug rep, she had us connected that way in her mind and would refer to us as 'the transplant people') anyhow, she would say to me "you and your brother make me feel so lucky". My brother was burnt over 30% of his body at age 11 months. Not a memory I particularly enjoyed having repeatedly pulled out of mothballs, but she meant nothing by it. Her daughter is exactly the same way - does not seem to hear herself half the time. I've been much called worse than brave, generally by close relatives.