I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: dawn24 on August 10, 2011, 09:23:05 AM
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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!
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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.
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I was scared and cried alot. ButI have a great doctor who was great and nurses at center helped a lot.
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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.
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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.
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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!
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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.
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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 ;)
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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.
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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.
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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.
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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. :rofl;
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.
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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!
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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 :banghead;
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Thanks for your offer Moosemom :grouphug; 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! :rofl;
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. :cuddle;
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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 ( :rofl;), 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.
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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
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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.
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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?
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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, :cuddle; hope I can get some help with it :thumbup;
Must be a glitch in the system for me. ???
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Okay, no clues from me then.
We now resume our regular programming.........
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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.
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:( :(
What I'm hearing is a lot of feelings of anger and isolation. Not good, since he's always been a loner anyway . . . .
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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. :(
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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. :(
:grouphug; :grouphug; :grouphug; 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 :grouphug; :grouphug; :grouphug; And if you can think of anything that I can do to help my man through this I'm all ears
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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.
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:( :(
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. :rofl; 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.
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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. :cuddle;
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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. :cuddle; to you!!
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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!!!!
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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.
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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.
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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.
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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!!
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Have people really been called a role model or a hero? :waiting; 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.... :rofl;
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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.
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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. :rant;
Give me a holler any time you want - I'm always at home if I'm not on the machine. >:(
Cricket (Chris) xx oo
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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!!!
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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. :cuddle;
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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!!! :rofl;
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.
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Have people really been called a role model or a hero? :waiting; 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.
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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
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Have people really been called a role model or a hero? :waiting; 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'. :2thumbsup;
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. :rofl;