shoulder to cry on

[amycdaa]

I have so many emotions right now and just want to get them out. I'm not sure if anyone will read this but I just need to get this out. Long story short dealing with kidney issues/failure for 7 years and have done my best to handle it. One year of chemo followed by 6 years of hemodialysis. I was a model patient followed my diet and fluid restrictions. A year ago my nephrologist decide to take me off dialysis because I had moved into stage four. The next part, how do I say this, was a doubled edge sword. No more dialysis was good at first. This past year has been the hardest year in all the years of dealing with this disease. I have been hospitalized 3 times for massive fluid overload. I was hospitalized twice for a deep vein thrombosis in my chest. I deal with most of the symptoms of stage four and some days I feel so bad I want dialysis. I was also diagnosed with gastroperisis.

My nephrologist, whom has been thru this with me all the way, I had full faith in him until three months ago. At a routine monthly check up I told him what I always tell him I'm exhausted, my concern of my abdomen being very large, frequent vomiting and nausea, urinating all night long, muscle cramps and bubbly urine. (My last urine test taken last Tuesday should very high protein in my urine and he didn't say a word. Since being taken off of dialysis I have gained 30lbs and it isn't because I ate myself into 30 lbs, I don't have much of an appetite.  He has always said this past year I should't be feeling like this.
Three months ago after telling my usual symptoms my doctor said maybe you should see a therapist or psychiatrist. This was not a suggestion to talk to them about handling my illness. He said he believed all my symptoms were in my head. I was shocked and hurt and confused.  I am emotionally devastated.

I thought about his suggestion long and hard and I can not accept my symptoms are in my head. Every day I beg my body to feel better it doesn't work. On Wednesday last week he suggested it again even though my numbers had gotten worse.

Honestly I am devastated, confused, angry. Stage four ckd is kicking my butt . Anyways, I just had to tell someone how I feel Thanks for listening.

[kickingandscreaming]

I'm sorry you've been going through such a hard time.  I don't even know where to start.  I don't understand why you were ON dialysis when you hadn't even reached stage 5.  And I don't understand why you were taken off dialysis when you reached stage 4 and allowed to fill up like a balloon.  This all seems like so much ignorance or negligence on your nephro's part that I would run, not walk to another nephro.  This one clearly is not on your case. He is clearly over his head.  And then to accuse YOU of being a mental case because he doesn't know how to help you is the last and most outrageous straw.  I doubt that you could/would fake several life-threatening hospitalizations.  How easy it seems to be for MD.s (especially of the male persuasion) to deem a woman patient hysterical and in need of mental health counseling to cover their own incompetance!

[PrimeTimer]

Obviously you are going thru a very very bad time. I'm sorry you are suffering.  You should not be!

If it were me, I would most definitely make an appointment to get a second opinion with another Nephrologist. I don't know if you had a different doctor for the cancer treatment but if you did, perhaps the cancer treatment team can help you find another Nephrologist. I don't know if you have high blood pressure but if you do, seems to me that may also be a sign that you have fluid overload and that is something that no doctor should ignore. Hope you can start your search for a new doc this week and put yourself on a path to recovery! Many years ago I was told that perhaps the pain I was feeling could be my emotions but then the blood test results started coming back...and the doctor apologized. Don't give up. If you have to get a new doctor then so be it. You have to keep going til you have some answers and unfortunately, sometimes that can take a long time but hopefully in your case it won't. Might help to show a new doctor some of your past lab results so they have something to compare to the tests they may order. So keep your chin up, this happens to a lot of people and we just have to keep going til we find the right doc willing to help.   

[amycdaa]

Thank you for the replies it means a lot to me. Let me clarify I was in renal failure when I was on dialysis for six years. The reason for the failure is that I had strep throat and from the infection I developed rapidly progressive glomerulonephritis. They did every thing they could to save my kidneys but unfortunately it didn't work. That is why I had the chemo treatments. A year ago my doctor said I was in stage four and took me off. I am in stage four still. At the time I Had one bad fistula and Had gotten another but they both failed leaving me with no access. This was at the exact same time he took me off dialysis. He does not want me to get another access until I have to start dialysis again. Which would mean a chest port.

[kickingandscreaming]

He does not want me to get another access until I have to start dialysis again. Which would mean a chest port.

Couldn't is also mean a getting PD catheter and starting PD?

[myporkchop]

I have so many emotions right now and just want to get them out. I'm not sure if anyone will read this but I just need to get this out.

Hi amycdaa, so sorry to hear you have been through all of this, it is not fair. You have come to the right place to vent and ask questions, everyone here is amazing with the knowledge and experiences they have.
You have a lot of people here that care and will definitely read this. Take care xx

[Charlie B53]

Kidneys can 'recover' a little function caused by trauma, even when the trauma is a long standing term.  HOWEVER, that recovery is merely temporary.  Although there is no telling just how long, or short, of time this temporary recovery is.

A 30 pound weight gain conbined with some of your other symptoms are cause for great concern and should not be brushed off lightly.

Dialysis can be adjusted to what the individual patient requires.  In your case you may not need so many hours, and may not even need three sessions each week, AT THIS TIME.  Even PD can be adjusted to fit individual needs for less treatment.

Definately seek another opinion from another Neph NOT associated with the current one.

[kristina]

I have so many emotions right now and just want to get them out. I'm not sure if anyone will read this but I just need to get this out. Long story short dealing with kidney issues/failure for 7 years and have done my best to handle it. One year of chemo followed by 6 years of hemodialysis. I was a model patient followed my diet and fluid restrictions. A year ago my nephrologist decide to take me off dialysis because I had moved into stage four. The next part, how do I say this, was a doubled edge sword. No more dialysis was good at first. This past year has been the hardest year in all the years of dealing with this disease. I have been hospitalized 3 times for massive fluid overload. I was hospitalized twice for a deep vein thrombosis in my chest. I deal with most of the symptoms of stage four and some days I feel so bad I want dialysis. I was also diagnosed with gastroperisis.

My nephrologist, whom has been thru this with me all the way, I had full faith in him until three months ago. At a routine monthly check up I told him what I always tell him I'm exhausted, my concern of my abdomen being very large, frequent vomiting and nausea, urinating all night long, muscle cramps and bubbly urine. (My last urine test taken last Tuesday should very high protein in my urine and he didn't say a word. Since being taken off of dialysis I have gained 30lbs and it isn't because I ate myself into 30 lbs, I don't have much of an appetite.  He has always said this past year I should't be feeling like this.
Three months ago after telling my usual symptoms my doctor said maybe you should see a therapist or psychiatrist. This was not a suggestion to talk to them about handling my illness. He said he believed all my symptoms were in my head. I was shocked and hurt and confused.  I am emotionally devastated.

I thought about his suggestion long and hard and I can not accept my symptoms are in my head. Every day I beg my body to feel better it doesn't work. On Wednesday last week he suggested it again even though my numbers had gotten worse.

Honestly I am devastated, confused, angry. Stage four ckd is kicking my butt . Anyways, I just had to tell someone how I feel Thanks for listening.

Hello amycdaa abd I am very sorry for the troubles you go through not only with your health but also with this unhelpful nephrologist ! What on earth is he thinking ? I am answering straight away because when I was in end-stage-kidney-failure, I also experienced the misfortune - just like yourself - to be registered with a very unhelpful National Health Service (NHS) doctor who tried to convince me and my husband, that all my typical ESRF-symptoms were "a figment of the imagination", despite the fact that he must have seen clearly from my bloodtests etc., that my health was in serious trouble with end-stage-kidney-failure. Unfortunately this NHS-doctor never infomed me or my husband about my end-stage-kidney-failure and we only found out how truly unwell I was when we eventually went to a private doctor to get a private bloodtest done, to find out what was going so wrong with my health.This private doctor had my bloodtests done very quickly and told us that I was in very serious health trouble with end-stage-kidney-failure ...
... Please do yourself a favour and please see another doctor as soon as possible because doctors who try to mess around with our health and our mind are not worth that we spend with them a minute of our time ... life is much too short for that ... 

[Fabkiwi06]

  I'm so sorry you're going through all of this!

If it was me, I'd find a new nephrologist. I'd even consider heading in to the ER and telling them you think your kidney's are failing - at the least they'd run labs and you might be able to get emergency dialysis and start relieving the symptoms as well as getting a nephrologist to deal with it (or lighting a fire under the behind of your current one).