My Nephrologist just feels like an undertaker

[Athena]

Much as my Nephrologists seem like caring concerned guys, what I find absolutely daunting and depressing when having contact with them is how they seem to be only waiting for my kidney death. There is NO HOPE that is ever communicated to me. Both know how dreadful and risky dialysis and transplantation can be for many. They don't seem to understand why I am so anxious whenever they allude to the FINAL stage - what's wrong with them?

No one has ever bothered to ask me whether I even want to be around for dialysis or Tx. I actually don't (but it's a secret for now). I live alone as a single, childless woman and only have an elderly frail mother who won't live forever for personal support. The way I see it, I can't possibly survive looking after myself, even if I wanted to survive on dialysis/Tx. I don't understand why everyone seems to think that D is some answer. It is hardly the answer. Particularly for an insulin dependent Type 1 diabetic, who needs their good judgement in managing their insulin dosages, etc.

I just don't know if I should tell my Nephrologists that they can kiss their Tx preparations goodbye, whether they might do more to help me NOW to avoid kidney failure. I'm feeling increasingly desperate. For me that is the only goal worth fighting for and the only reason to keep living in hope for.

(Please, I don't want to upset anyone here if my deeply felt desires and ideas are contrary to their own. I must be honest with what I truly want. I feel so hopelessly lost just going from one Neph meeting to the other without being able to articulate what I really want).

After reading through more posts on this site, I can only say how much I admire everyone for what they are going through. This disease is the mother of all diseases. If only, more was being done to help us in medical research!

 

[Michael Murphy]

I have been on dialysis for 2 yars now and while I wouldn't. Reccommend this as a holiday treat the fact is I spend 18 hours a week either havering dialysis or taking care or post dialysis chores like getting taped and weighed.  That leaves me 150 hours a week to do other things.  All and all it is not a bad life.  The people I have met doing dialysis are good people.  Dialysis is not the end but a way to continue. 

[Hootie]

Athena,
I hear your frustration and maybe a little fear. We had the same feelings going into the whole dialysis thing. Let me give you my  perspective as a caregiver for my wife. She turns 61 on Friday and has been Type 1 diabetic since she was 13....that is 48 years. She had a doctor  tell she would never live to be 30 and she has outlived that doctor! She has dealt with all the diabetic issues for almost her entire life. About 6 years ago she went on the insulin pump which has been a "God send" helping her to manage her sugar levels better than ever.

For the last two plus years, she has been going doing that slippery slope of CKD. She felt awful with anemia, and all the things that go with it. In August she got her fistula and started in center hemo in early October. In December we were trained for home hemo and are coming up on 3 months of doing treatment at home with the Nxstage system. The system is easy to operate and works with a tremendous amount of support from Nxstage.

She is determined to make the best out of difficult situation. Her attitude makes all the difference in the world. Somedays, she does not want to do get treatment but she does and feels very good when completed. From what you said, I realize that you do not have a caregiver but many folks do in center and have done for a number of years. Hang in there, roll with the flow and you will be fine. 

[Deanne]

This site is a safe place for you to express your worries, fears, anger, frustrations.... all of it.

I'm "lucky" in that I grew up knowing I had kidney disease while not feeling any symptoms of it until I was well into adulthood. This saved me from the shock of what you're going through. I've seen many many others here who have gone through your situation, felt the same fears, anger, and frustration and wanting what we can't have - our perfect health back, and nothing else is good enough. We can't all have that though and I think what you're feeling in light of that is perfectly normal.

Your nephrologist likely wouldn't be surprised to hear you say you don't want to do either dialysis or transplant. Even growing up with kidney disease, I said the same thing. In the end, I did both. I was only on dialysis for six months before transplant, but it wasn't really so bad for me. I did PD and my evenings were greatly restricted since I needed to be hooked up at about 7:30 in order to be done and up for work on time the next morning.

I, too, am single and don't live near family and it's fine. I know several others here are, too. I've never noticed any big problems because of it. My biggest challenge was going through the transplant evaluation and answering their questions about post-transplant help. I have several friends who said they would be willing to help, and since I'm used to coping on my own with everything, I had a lot of confidence in my own abilities. I never had any doubts that I could handle it all on my own. You can do it, too!

Are you seeing a counselor to help you get through this?

[Charlie B53]

Receiving any terminal diagnosis sends everyone into some stage of the grieving process.  Depression, anger, rage, etc.   I don't know the names or the order of the stages.  But somewhere in there is finally acceptance, coming to terms with your disease and learning to cope with it.

It is NOT necessarily an immediate death sentence.  Life on dialysis can actually be quite normal, with a number of patients keeping their jobs, having children, and leading very productive lives.

As you can see here at IHD there are many of us are managing.  That doesn't mean that we don't have times of stress and bouts of depression.  But we do learn to cope.  And one of those methods is have you just done, get on here and share you experience and feelings and learn from others that have had, and are having very similar experiences and feelings.

Another very important step is to talk to your team.  Sometimes it seems hard to speak up, the Dr can maybe seemed rushed or uncaring.  But most of the time you will come to find out that they take your health very seriously, and do care.  If necessary write a short note to yourself of the things you want to ask or talk about at your next meeting.  Tell them that you have a few questions and get out your note.  You may feel much better once you ask and receive clarification and explanations for your questions.

If you still feel unable to raise your issues then find out if your team has a Social Worker.  Make your concerns know to them.  They are tasked with helping you to find ways to make your transition to dialysis easier.

Repost to let us know how you are doing.  WE care.

[MooseMom]

Athena, doctors do not have crystal balls.  Some are more empathic than others.  Some can "feel" a patient's anxieties.  Others cannot; maybe their case load is too heavy.  But if it is important to you that your nephs understand how you are feeling, you must tell them.

In saying that, though, they probably understand your anxiety about the "final stage" because they've seen it all before.  Whenever I saw my neph, once I saw my numbers and felt the relief that at least I wasn't getting worse, I got out of there as soon as I could.  But on the occasions where my numbers got worse, my anxieties were harder to keep hidden, and during the times when I would start to cry, my neph (who can be the grumpiest man on earth) would transform into a very caring, sympathetic individual.  He knew how awful dialysis could be, and he knew how much I dreaded it, so he worked very hard to get me referred to two different tx centers for evaluation ASAP. 

"Do you want dialysis, or would you rather die?" is a difficult question for any doctor to ask his/her patient.  But if this is a real question in your mind, tell your nephs.  What you are feeling is very common, very normal. I am 100% certain that your nephs have heard other patients say that they don't want to have any kind of renal replacement therapy (dialysis or transplantation).  Do they know that you live alone?  You should tell them this if you haven't already because this can impact which modality may be best for you.  Good nephs understand that dialysis is an enormous lifestyle change.

Do you truly believe that your nephs are not doing all they can NOW to help you avoid ESRD?  If so, you really do need to ask them what more you can do to help yourself....what can THEY do to help you help yourself.  What are they doing now for you to help slow down your renal decline?  It is important that you trust them.  If you don't trust them, then maybe you can find another team.

One thing about CKD...you HAVE to advocate for yourself.  This is true for anyone dealing with a chronic disease.  You have to be the captain of your own starship.  You can't give the helm to anyone else.  Your doctors and everyone in the medical community are your crew.  They are there to give you information that will enable you to chart your course.  You, as captain, have to do make decisions based on that information, and it is up to you to give the orders.

As you know, I viscerally understand your fears and anxieties.  But you must not let those feelings undermine you or paralyze you.

I personally never cared whether or not my neph understood my feelings.  He was not there to hold my hand nor to empathize with me.  He was there to keep me off dialysis as long as possible.  Whenever I felt that my emotions were beginning to overwhelm me, I DID tell my neph, not because I wanted him to hug me, rather, because I thought it was medically impactful. 

Deanne's post pretty much sums it up.  Please read it whenever you are feeling particularly low.

 

[Hootie]

Both Deanne and MooseMom said it best! Those are great words of wisdom!   

[Rerun]

You are worth MORE to them on dialysis then off.  $$$$   At least that is my opinion.

Hang in there.  Read all you can and make your choices.

   

[PaulBC]

Not speaking from any experience (I'm a parent of a patient) but the subject line got my attention, so I hope you don't mind if I comment.

I think your doctors' attitude is largely explained by the adage "If all you have is a hammer, everything looks like a nail." They have been through this with many patients, and may have lost some empathy for something that is routine to them, but not to you. From their perspective, the likelihood of preserving your kidney function probably seems much lower than that of treating you effectively for ESRD, which is what they know how to do. Part of the effective treatment is getting the patient to come to terms in time to prepare. For many patients, their approach is exactly right. In your case, probably not. You've made your feelings very clear.

I don't know your exact situation or whether your nephrologists are showing the best judgment. Have you considered consulting another doctor? Maybe you could find someone who was on board with preserving your kidney function as long as possible. I'm not saying it would be easy to find someone. I wouldn't even know where to begin. What you'd at least want is an objective evaluation of how long you can reasonably expect to survive without dialysis or a transplant. You may not be getting an objective view from your current doctors, who genuinely believe that you would be much better off accepting ESRD and its treatments.

[Athena]

You are worth MORE to them on dialysis then off.  $$$$   At least that is my opinion.

Hang in there.  Read all you can and make your choices.

   

Rerun, you are quite on the money I believe. Here is a link to a "Dialysis competition" prize that is running here in Australia. So many bright minds yet they can't seem to get their heads around the idea of preventing the need for D in the first place! Imagine how much money they might save then?

http://www.abc.net.au/news/2015-03-16/affordable-dialysis-machine-challenge/6323568

[PaulBC]

You are worth MORE to them on dialysis then off.  $$$$

Rerun, you are quite on the money I believe.

I think it's possible to be too cynical. The dialysis industry wants your money, sure. Dialysis centers are their "cash cow" and... well that conjures up a creepy image of a milking facility that may not be far off the mark.

But your doctors have more complex motivations. At least I think they do. I'm not a doctor. I'm a software engineer. I like getting paid as much as anybody does, but I get a lot more satisfaction out of getting paid for something people really want. It's disappointing to deliver something people don't want, won't use, or only use for lack of any alternative.

If I were a doctor, would I feel better about providing a standard, inadequate therapy, or would I rather be seen as a miracle worker who actually gave my patient a cure (or in your case something like a deferral)? Obviously, I'd prefer the latter. But again, speaking as a software engineer, I am going to look back on experience and not get someone's hopes up for something I don't think I will be able to deliver (on their timeline, or at all).

So in short, assuming your nephrologists are reasonably decent people, they may be suffering from a lack of imagination, or in-the-box thinking, but they would probably like to help you as much as they can, and just don't have much better to offer. But get a second opinion. Maybe they just haven't seen anyone so intent on preserving kidney function without dialysis, and you need to find another doctor who endorses your plan.

Off topic: I noticed the Blade Runner allusion. I remember quoting Blade Runner to myself when thinking about my daughter "The light that burns twice as bright..." I won't finish the quote, because I am not Dr. Tyrell, and I will do anything in my power to keep that light burning for many years to come.

[Athena]

I have been on dialysis for 2 yars now and while I wouldn't. Reccommend this as a holiday treat the fact is I spend 18 hours a week either havering dialysis or taking care or post dialysis chores like getting taped and weighed.  That leaves me 150 hours a week to do other things.  All and all it is not a bad life.  The people I have met doing dialysis are good people.  Dialysis is not the end but a way to continue.

Michael, that is great news and that is one way to look at it. I wonder what was the reason for kidney failure? I ask because it doesn't sound like you're a diabetic. Some people who end up on D seem to do quite well but others don't feel so well.

[Athena]

Athena,
I hear your frustration and maybe a little fear. We had the same feelings going into the whole dialysis thing. Let me give you my  perspective as a caregiver for my wife. She turns 61 on Friday and has been Type 1 diabetic since she was 13....that is 48 years. She had a doctor  tell she would never live to be 30 and she has outlived that doctor! She has dealt with all the diabetic issues for almost her entire life. About 6 years ago she went on the insulin pump which has been a "God send" helping her to manage her sugar levels better than ever.

For the last two plus years, she has been going doing that slippery slope of CKD. She felt awful with anemia, and all the things that go with it. In August she got her fistula and started in center hemo in early October. In December we were trained for home hemo and are coming up on 3 months of doing treatment at home with the Nxstage system. The system is easy to operate and works with a tremendous amount of support from Nxstage.

She is determined to make the best out of difficult situation. Her attitude makes all the difference in the world. Somedays, she does not want to do get treatment but she does and feels very good when completed. From what you said, I realize that you do not have a caregiver but many folks do in center and have done for a number of years. Hang in there, roll with the flow and you will be fine. 

Hootie, you sure do have a story that is remarkably relevant to me. Thank you for posting. 48 years with T1 sure is a long road travelled. I am being pressured into getting a pump because apparently it is much easier to have better control. I am however resisting being attached to a gadget. I suspect I'm gong to have to relent soon and get one though.

Can I ask what other complications, if any, does your wife have? Is she waiting on a transplant? If it's not too personal, can I ask what it is that keeps her going?

The issue of having a caregiver seems critical to me from where I sit right now. I just don't know how anyone can survive without functioning kidneys without a carer. That is why I just don't want to do this. My Nephrologist has written to my GP advising that 'renal impairment has been very difficult' for me & that I am too anxious whenever he brings up transplantation. What he doesn't know is how much I detest my GP by now, who treats me just like any other person who comes off the street to see him.

How does anyone find kidney failure not difficult? I think it's one of the worst diseases in the canon of medicine. I see my endocrinologist at the renal ward of the local hospital and it's not a great place to be. It happens to be a teaching hospital and has a great reputation, but it's a miserable place to be in.

Thanks again for your post. I wish you and your wife the best of luck. 

[Athena]

This site is a safe place for you to express your worries, fears, anger, frustrations.... all of it.

I'm "lucky" in that I grew up knowing I had kidney disease while not feeling any symptoms of it until I was well into adulthood. This saved me from the shock of what you're going through. I've seen many many others here who have gone through your situation, felt the same fears, anger, and frustration and wanting what we can't have - our perfect health back, and nothing else is good enough. We can't all have that though and I think what you're feeling in light of that is perfectly normal.

Your nephrologist likely wouldn't be surprised to hear you say you don't want to do either dialysis or transplant. Even growing up with kidney disease, I said the same thing. In the end, I did both. I was only on dialysis for six months before transplant, but it wasn't really so bad for me. I did PD and my evenings were greatly restricted since I needed to be hooked up at about 7:30 in order to be done and up for work on time the next morning.

I, too, am single and don't live near family and it's fine. I know several others here are, too. I've never noticed any big problems because of it. My biggest challenge was going through the transplant evaluation and answering their questions about post-transplant help. I have several friends who said they would be willing to help, and since I'm used to coping on my own with everything, I had a lot of confidence in my own abilities. I never had any doubts that I could handle it all on my own. You can do it, too!

Are you seeing a counselor to help you get through this?

Wow Deanne! You're truly remarkable if you live alone and have coped with everything on your own - including still working. Your story is amazing and I look forward to liaising with you in future. What sort of work do you do, if it isn't too personal. Do you have other medical conditions that you have to deal with alongside the kidney disease? Has your illness made it difficult for you to find a partner?

I have just been referred to a renal social worker recently. She is organising the renal dietician. I'm not too advanced for them to be overly concerned about me, I guess, but I should get all this organised. It depresses the hell out of me to be seeing so many healthcare workers but it needs to be done. I still look healthy and get around okay in society. I exercise and look fit and trim. I just want to be a normal healthy person. Whenever they talk to me about D/Tx as the solution, I see only a life of sickness and extreme vulnerability ahead of me. Everything that is good about life involves good health. (I'm also dating a man who seems to have extreme reservations about dealing with my Type 1D - I haven't even told him about the kidney disease). It's all too hard.

But I do admire you for still working through all of this Deanne. I'd love to work again but my life is filled with endless medical appointments and running around trying to just keep my life in order.

[Michael Murphy]

How I ended up on dialysis no one is sure but I read a article about causes and they listed Scarlet fever,strep throat, and pardon the spelling impetigo.  All caused my staph bacteria.  My whole childhood I had these and I was very sick with them.  But I also realize how I ended up on Dialysis does not matter.  Here I am.  Recently my. Dialysis center was evacuated because a construction company cut a 12 inch gas line just out side my clinic.  My four and a quarter session was cut to three and a half hours.  The next day I didn't feel well and was brushing mt teeth almost hourly due to a bad taste in my mouth. Now I know why I sit for a long session. Why does not matter the fact that I get to continue having a life does.  I was not in a hurry to start dialysis and put it of for several years over my doctors strong objections   I personally was waiting for a sign,  one day I vomited in work and that was it.  I called the doctor and started dialysis the next week.  The only hing I would change is I would have toured a clinic before my first appointment.  I was terrified the first day.  It was like starting school as a five year old.  It turned out school was not so bad and I learned to live with it and dialysis is the same.

[Deanne]

Thanks for the compliment. I don't feel "remarkable" though. I just do what I need to do to survive and have the best life possible, like everyone else. For the most part, I've been healthy and have had no excuse to live anything other than a normal life. The only times I've felt sick were when a doctor put me on a high dose of prednisone many years ago, and now, post-transplant due to a few complications, and I assume those last post-transplant kinks will soon be worked out. I felt fine and didn't have trouble maintaining normal activities when I was on dialysis. Granted, I was only on dialysis for 6 months. I went out walking every day, with a goal of 10,000 steps/day. I kept up with the house stuff and animal stuff. I had to go to bed earlier to connect to the PD cycler, but I needed more rest anyway.

I think the remarkable people are those who've been suddenly slapped in the face by all of this without any warning, after living a life full of expectations to be healthy and active well into their senior years. Suddenly their life's picture has changed and they need to learn a new normal. Since I was diagnosed so young, I don't know anything different. I didn't need to adjust to anything.

The only way kidney disease has hindered having a life partner is psychological. I grew up in a time and place when I don't think people communicated with children very much, so I grew up thinking I was going to die at any time, and then was a victim of bullying in junior high school. It all changes your brain and I've never wanted a relationship since then. I'm sorry your boyfriend is having such a hard time dealing with your medical issues. You need his support, but if he's that fearful, instead it seems like it might be adding stress to your life if you need to hide things from him and constantly reassure him.

As to your question about my job. I'm a technical writer. I geared my career toward a one that would offer flexibility and an opportunity to work from home. I could easily drive in to the office every day, but I work from home most of the time. For the past several years, my work team has all been in a different state, so it made no sense to drive in to an office just to sit in a cube. I still work normal daytime hours, but without the commute.

I know it's very hard for you, but try not to think of this as a death sentence. You *can* still have a happy, active life and you might be years from dialysis yet.

[MooseMom]

Athena, I just want to make sure I haven't misunderstood or missed something here.

How close are you to ESRD?  Are your nephs already discussing D/tx in such a manner that you all KNOW that this is just around the corner? 

I understand that you are resistant to an insulin pump, but if this is what it takes to better manage your diabetes, doesn't it make sense to attach yourself to a pump rather than having to later attach yourself to a dialysis machine?  Wouldn't better management of your diabetes NOW mean that your chances of avoiding dialysis that much better?

I don't know that much about T1, so I apologize for my ignorance!

[PaulBC]

I grew up in a time and place when I don't think people communicated with children very much, so I grew up thinking I was going to die at any time, and then was a victim of bullying in junior high school.

Off the original topic, but I'm sorry to hear this, and I will keep this in mind for my daughter. I communicate a lot with my daughter about her condition (too much?), and I think she has a solid understanding of what's in store. If anything, she minimizes the effect it is going to have on her future, but I don't expect kids to think so far ahead. It has revealed a sense of gallows humor in her that I never fully appreciated before. Once when I was trying to explain autoimmune disease, she laughed out loud at the thought of her immune system marching in like an army and declaring victory over her kidneys. A little disturbing for me as a parent, but maybe she's developing the coping mechanisms she will need.

So far I don't worry about bullying. I seriously think kids are nicer to each other today than they were when I was growing up. She stays very active and fits in. After a transplant, it should go even more smoothly.

[UkrainianTracksuit]

Hi,

I popped in for a visit and saw this in the Recent Posts.  I kind of feel like I have to say something just because I think I (sort of?) understand.

First of all, please explain why Type 1 diabetes is making such a huge difference on why you go onto dialysis or not?  I understand that is a co-morbidity however so many Type 1 diabetics are on hemodialysis (sorry, I don't come across anyone on PD).  As you know, it is one of the many causes of kidney failure (sadly, even those with well controlled levels) and they are doing well on dialysis.  At my clinic, most of the patients are Type 1 diabetics and quite young.  (aged 18 to 40s)  (Had these patients been in a better environment and easier access to medication, I bet they wouldn't be on dialysis.  So, I don't really blame the Type 1 diabetes.)  As long as you keep your mental faculties and discuss with a) your diabetes team b) your renal team, you should be able to make insulin adjustments as needed as well as control your diet.

I've been Type 1 since the day I was born (recently hit 30) and I am on dialysis.  Granted, my kidney failure was not caused by Type 1 (my kidneys started to clunk out as a child) but the only advice nephrologists can give you is to control your blood sugars.  There isn't anything else that can be done, sadly.  Well, you keep to a renal friendly diet, keep a good blood pressure, don't take non-renal friendly products, yadda yadda; the basic kidney common sense.  If you have diabetic nephropathy, you can keep stable function and avoid dialysis for a long time if you keep your blood sugars in check.  I don't have an insulin pump either but I know that it has greatly helped some people.

I also said that there would be no way I would go onto dialysis.  However, when the time came, I kind of had the realization that I wasn't ready to give up my life just yet.  Keep in mind, I'm not afraid to die if that is the case.  It's a bit fatalist but whatever.  The point is that there are still things I want to do and things I am able to do on dialysis.  Maybe I won't be able to trek the Amazon but I can attempt to grow inedible bananas in my backyard or some other dream.  We have to stop thinking we "want" to be healthy normal people.  That train left the station a long time ago.  It's cliché but normal is how we define it.  Don't define your life according to the variables of someone else.  We are in our current state and we have to make a life with what we have not what we want.

Life doesn't end on dialysis.  Does it suck?  Yeah.  Can it be scary?  Yeah.  Do you have side effects and want to give up?  All the damn time.  Do you see people in your age group having a ball and you resent it?  Yep.  However, you have a life.  My nephrologist told me that with kidney disease we all need to have many life plans and change according to our point in life.  Kidney failure is a bit like the loss of one life but the development of another one.  We have to consider how to define ourselves now: what can we do?  what do we like to do?  how can I be happy?  Dialysis life is not the end if you choose it not to be.

I don't have much of a support system either.  My family is on another continent (and pity me rather than support me) and my husband wants nothing to do with my care.  I know that I will never have children and I'm fine with that.  My friends are young and ditzy so I can't count on them for anything health related.  Hair advice, yeah.  A ride to dialysis?  No.  When I see people that are on their own, older and doing dialysis, I say to myself, "Now, there is strength and someone I should emulate!"  I work, have hobbies and travel around domestically.  My life is full despite dialysis.     

Nephrologists talk about dialysis because when function gets lower, that is in a kidney patient's future.  It is not a story of doom and gloom; it is acting in preparedness.  Patients must be prepared about what is ahead of them.  The nephrologist wouldn't be doing his mandated job if he did not prepare and educate you about the disease you have.  So, obviously, I don't have a transplant but that doesn't have to be viewed so negatively either.  My renal team has really been on me lately with more transplant information and suggesting maybe I should go that route.  It's just part of the renal industrial complex that transplant is brought up at some point.  Your nephrologist is bringing this up also for you to be prepared.  Have a look at some of the transplant success stories: there are people out there living "almost" normal lives!  Nothing is guaranteed in life; the length of your own life or the length of how long a transplant lasts.  Do people have side effects from medication?  Totally.  I'm not saying it is perfect but it is a path to a more normal life if you consider it.  (As I have been told...)

So, all of this has been about dialysis and diabetes.  If dialysis is right around the corner, there need to be serious decisions to be made.  However, if you have adequate function that you may prolong your time away from a machine, do everything you can (as mentioned above) to avoid it.  You know, there are some people that have managed to avoid dialysis in Stage 3 and Stage 4 until they naturally went to sleep up in the clouds.  It's easy to say but don't focus on the end of dialysis but rather think positively of working on keeping the function you have.

By the way, unless a nephrologist is a sadist who would smile at your pain, most nephrologists look worried and scowled.  I think I just invented a new category of sadism: a nephrosadist. 

Sorry my English is bad.  Good luck with everything.

[kristina]

Much as my Nephrologists seem like caring concerned guys, what I find absolutely daunting and depressing when having contact with them is how they seem to be only waiting for my kidney death. There is NO HOPE that is ever communicated to me. Both know how dreadful and risky dialysis and transplantation can be for many. They don't seem to understand why I am so anxious whenever they allude to the FINAL stage - what's wrong with them?

No one has ever bothered to ask me whether I even want to be around for dialysis or Tx. I actually don't (but it's a secret for now). I live alone as a single, childless woman and only have an elderly frail mother who won't live forever for personal support. The way I see it, I can't possibly survive looking after myself, even if I wanted to survive on dialysis/Tx. I don't understand why everyone seems to think that D is some answer. It is hardly the answer. Particularly for an insulin dependent Type 1 diabetic, who needs their good judgement in managing their insulin dosages, etc.

I just don't know if I should tell my Nephrologists that they can kiss their Tx preparations goodbye, whether they might do more to help me NOW to avoid kidney failure. I'm feeling increasingly desperate. For me that is the only goal worth fighting for and the only reason to keep living in hope for.

(Please, I don't want to upset anyone here if my deeply felt desires and ideas are contrary to their own. I must be honest with what I truly want. I feel so hopelessly lost just going from one Neph meeting to the other without being able to articulate what I really want).

After reading through more posts on this site, I can only say how much I admire everyone for what they are going through. This disease is the mother of all diseases. If only, more was being done to help us in medical research!

 

Hello Athena,
I can understand where you are coming from and I also have been wondering, why there is so little done to help kidney patients medically.
Of course, there is dialysis-treatment available and/or transplant-treatment, but they are treatments only and nothing else,
even though each treatment assists us to continue living, whereas without treatment we would be dead and buried.
But unfortunately the novelty of continuing life with the help of dialysis-treatment can wear off after a while ... expecially on a rainy day...
Hopefully some real medical help is available for us soon...
Best wishes from Kristina.

[Hemodoc]

Well, I am a physician and I never have thought of nephrologist's as an undertaker. In reality, far too many are execututioners promoting death by iatrogenic complications that are known euphemistically as usual or expected outcomes. 

Fortunately, I run the Laird dialysis unit where I Can avoid iatrogenic complications, well that is until NxStage decided to poison me with aluminum that is. The executioners are all around us. CMS is the undertaker keeping statistics upon the executioners work.

[MooseMom]

Hemodoc, are you still on NxStage?  If so, is the aluminium issue resolved?

[Hemodoc]

I went on the bags last July and the levels fell to less than 5 UNTIL this month. It seems that they are now using the same sodium lactate supplier for the bags and the SAKs.mI will see in a couple of weeks where we are at, but my suspician is it will keep going up for the next two months. If that is brought to pass, I will be done with NxStage as a daily use. I frequent trips might be a consideration, but I am having some serious trust issues with them.

I find it incredible that they continue to deliberate poison their patients with low levels of aluminum for the sake of more profits. Makes no sense.mand if and when I go, I Will not go silently.

[Athena]

Do you truly believe that your nephs are not doing all they can NOW to help you avoid ESRD?  If so, you really do need to ask them what more you can do to help yourself....what can THEY do to help you help yourself.  What are they doing now for you to help slow down your renal decline?  It is important that you trust them.  If you don't trust them, then maybe you can find another team.

One thing about CKD...you HAVE to advocate for yourself.  This is true for anyone dealing with a chronic disease.  You have to be the captain of your own starship.  You can't give the helm to anyone else.  Your doctors and everyone in the medical community are your crew.  They are there to give you information that will enable you to chart your course.  You, as captain, have to do make decisions based on that information, and it is up to you to give the orders.

I personally never cared whether or not my neph understood my feelings.  He was not there to hold my hand nor to empathize with me.  He was there to keep me off dialysis as long as possible.  Whenever I felt that my emotions were beginning to overwhelm me, I DID tell my neph, not because I wanted him to hug me, rather, because I thought it was medically impactful. 

 

Thank you Charlie & Moosemum for listening & for your insightful advice.

I have made it very clear to my Nephs what I want - which is to not progress, even reverse it and stay healthy. My primary Neph was is an esteemed veteran nephrologist whom everyone it seems is seeking. My second Neph is a Professor at a teaching hospital who is devoted to research into preventing CKD & ESRD. All sounds good on the face of it. In reality, these guys can't do anything to help me! When I was diagnosed & bursting with health & vitality, my primary care Neph only looked at me with great sadness. He knew it was going to be all downhill from then on. The fact is diabetic nephropathy, once overt proteinuria is established, is a deadly incurable disease ... I even once told him in no uncertain terms that I am not happy with the way things are going & that I expect more. It was a rather emotional strongly worded scene but my neph could only take it on the chin. He told me that if he could do more, he would. He also has given me some valuable advice on clinical trials and has told me that he is always considering me as he comes across any promising new research. I do trust him, as well as the new Neph, but because it's such a hopelessly under-researched incurable disease - my trust in them becomes pretty useless. I would even say that it's best to not trust Nephs too much for it risks making us too embracing of their judgement - which can always be wrong. They are not Gods and can make mistakes. We the patients, can't afford any mistake. My second Neph looked at me recently and said "This disease can get terribly confusing". Some more prophetic words for my poor subconscious to process!

I do constantly question everything and that has no doubt improved my treatment in small subtle ways. Sometimes information & knowledge is power in itself. But it's not enough.

My fundamental position is that Nephrology needs a good massive kick up the backside for not doing enough for kidney patients! I believe there is a horrible resignation and complacency in this field that absolutely staggers belief. Whatever renal research there is, is geared towards helping those who have already reached ESRD (when it is too late) and even that is just pitiful. I am convinced that if there were an ample supply of good medical minds who really wanted to find a CKD cure they would. Apathy is what is really killing us.

[Athena]

How I ended up on dialysis no one is sure but I read a article about causes and they listed Scarlet fever,strep throat, and pardon the spelling impetigo.  All caused my staph bacteria.  My whole childhood I had these and I was very sick with them.  But I also realize how I ended up on Dialysis does not matter.  Here I am.  Recently my. Dialysis center was evacuated because a construction company cut a 12 inch gas line just out side my clinic.  My four and a quarter session was cut to three and a half hours.  The next day I didn't feel well and was brushing mt teeth almost hourly due to a bad taste in my mouth. Now I know why I sit for a long session. Why does not matter the fact that I get to continue having a life does.  I was not in a hurry to start dialysis and put it of for several years over my doctors strong objections   I personally was waiting for a sign,  one day I vomited in work and that was it.  I called the doctor and started dialysis the next week.  The only hing I would change is I would have toured a clinic before my first appointment.  I was terrified the first day.  It was like starting school as a five year old.  It turned out school was not so bad and I learned to live with it and dialysis is the same.

Michael thank for that. I do find it interesting to learn how people can end up on D, to be quite honest. Just me. Your story does remind me that I was struck down with an infectious respiratory disease when I was quite young. I was fed a lot of antibiotics and God knows what other medications over a 2 year period. I eventually developed Type 1 diabetes in early adulthood & then eventually developed kidney disease. I keep going back to the childhood illness as being the cause of everything else that has developed. But we can never really know.