I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Athena on March 25, 2015, 05:16:59 AM
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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!
:rant;
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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.
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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. :2thumbsup;
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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?
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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.
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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.
:cuddle;
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Both Deanne and MooseMom said it best! Those are great words of wisdom! :clap;
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You are worth MORE to them on dialysis then off. $$$$ At least that is my opinion.
Hang in there. Read all you can and make your choices.
:flower;
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Not speaking from any experience (I'm a parent of a patient) but the subject line got my attention, so I hope you don't mind if I comment.
I think your doctors' attitude is largely explained by the adage "If all you have is a hammer, everything looks like a nail." They have been through this with many patients, and may have lost some empathy for something that is routine to them, but not to you. From their perspective, the likelihood of preserving your kidney function probably seems much lower than that of treating you effectively for ESRD, which is what they know how to do. Part of the effective treatment is getting the patient to come to terms in time to prepare. For many patients, their approach is exactly right. In your case, probably not. You've made your feelings very clear.
I don't know your exact situation or whether your nephrologists are showing the best judgment. Have you considered consulting another doctor? Maybe you could find someone who was on board with preserving your kidney function as long as possible. I'm not saying it would be easy to find someone. I wouldn't even know where to begin. What you'd at least want is an objective evaluation of how long you can reasonably expect to survive without dialysis or a transplant. You may not be getting an objective view from your current doctors, who genuinely believe that you would be much better off accepting ESRD and its treatments.
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You are worth MORE to them on dialysis then off. $$$$ At least that is my opinion.
Hang in there. Read all you can and make your choices.
:flower;
Rerun, you are quite on the money I believe. Here is a link to a "Dialysis competition" prize that is running here in Australia. So many bright minds yet they can't seem to get their heads around the idea of preventing the need for D in the first place! Imagine how much money they might save then?
http://www.abc.net.au/news/2015-03-16/affordable-dialysis-machine-challenge/6323568
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You are worth MORE to them on dialysis then off. $$$$
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.
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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.
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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. :2thumbsup;
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.
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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.
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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.
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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.
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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!
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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.
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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.
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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!
:rant;
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.
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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.
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Hemodoc, are you still on NxStage? If so, is the aluminium issue resolved?
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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.
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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.
:cuddle;
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.
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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.
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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.
Dear Peter, I am so grateful for your post. It's wonderful to hear from a physician who's also dealing with kidney disease. In my medically lay mind, I have often thought that a medical adverse reaction (iatrogenic complication) or medical mistake in a hospital is more likely to kill me than the natural outcome of the disease itself! I have seen enough of hospitals to know that there are very stressed, rushed people in them having to cope with a lot. I am lucky to have survived an emergency dept turning me away when I had severely low serum sodium levels only 3 months ago. I returned the next day with even lower blood sodium levels & they realised their error. Luckily I did not suffer a seizure or heart attack. Not everyone gets to be so lucky.
I have followed the post about the aluminium problem with Nxstage with interest and wish I could offer you some advice. The only advice I can give is the one I give to myself - which is to not take it silently. Profits do come before patient safety and welfare, unfortunately. I wish we were more vocal in kidney advocacy. Individually, we're toast but collectively we can make some difference to the way this disease is treated and researched :pray;
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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!
MM, i don't believe that I am close to ESRD as my eGFR is about 28 (hoping to get back in the 30s). My primary care Neph said that he wants to organise a pre-emptive transplant when I get to around eGFR 20. So I guess that means they want to start getting busy with this very soon. I don't even know whether a pre-emptive transplant is what I truly want.
From what I gather, isn't a transplant the 'light at the end of the tunnel'? Don't most people who are waiting for end-stage dream of getting a Tx? I'm so confused :secret;
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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.
I am shocked and hurt to hear this. We all loved the idea and purpose of NxStage. The idea that this company has lost your complete trust is profoundly troubling.
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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.
I can't disagree, but "CKD" is an umbrella term because many things can cause "CKD". You have it as a result of T1 diabetes. I have it because of fsgs, an entirely different condition. CKD may be the end result, but the paths to it are various.
My neph and I worked tirelessly to keep me off dialysis. When I first met my neph, he said that he "didn't have much hope for those kidneys" and referred me to a tx clinic right away. Well, with the right combination of meds and diet, I was able to stay "in remission" for about 8 years, which defied all expections. He was determined to keep me off dialysis, and I ended up with a pre-emptive tx. For me, that was the light at the end of my particular tunnel. The idea of dialysis horrified me (my mother spent 5 years on it), so I never had any doubt in my own little mind about tx. That was my goal, no question.
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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.
I completely agree with all of the above, and I hope my previous reply didn't suggest otherwise.
One big problem with kidney disease is the popular misconception that dialysis and transplant are effective treatments, when they're only stopgaps that cause all kind of other problems. I can speak from experience that this came as news to me. I knew about as much as most people know about kidneys, and only fully grasped the situation when faced with it personally.
The other is that you're certainly right that the most promising medical students aren't very likely to specialize in nephrology. And assuming one of the best medical minds does go into nephrology, they're going to be a lot more interested in improving renal replacement for ESRD than in helping people preserve existing kidney function. So, yes, apathy is the big enemy, but I don't have any great ideas of what to do about it. Maybe someone else here does.
From what I gather, isn't a transplant the 'light at the end of the tunnel'? Don't most people who are waiting for end-stage dream of getting a Tx?
Also want to add that many kidney patients are at best ambivalent about transplants. There are studies (I have to look them up again) that show many dialysis patients will turn down offers of live donors because they feel guilty about imposing a burden on others. There are probably other reasons as well. The complications of immune suppression are also major reasons for ambivalence.
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Moosemum, I am very curious about what all the medications and dietary changes you were given that lead to such great results in your FSGS. I know there are many different types of kidney disease, each with their own pathway towards internal destruction. I have read up a little on your condition, it is a bit similar in terms of fibrosis setting in. I am just curious about how yours was treated.
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"One big problem with kidney disease is the popular misconception that dialysis and transplant are effective treatments, when they're only stopgaps that cause all kind of other problems. I can speak from experience that this came as news to me. I knew about as much as most people know about kidneys, and only fully grasped the situation when faced with it personally"
Paul, you've hit the nail on the head and summarised the situation with crystal clear clarity. That is why there is NO research - the public are not even aware of the problem! Nephrologists keep informing me that CKD is much more common than what people realise ... That's a lot of people who may be destined to end up on dialysis in the future. But ignorance, apathy and inertia is what hinders us from finding new & better treatments. The other issue is that it's regarded primarily seen as an old persons disease. And we all know what should be allowed to happen to the elderly - they should just die in peace. Those of us who are still young and who need to be productive, are just sacrificed on the altar of apathy. It's the nephrologists who I mainly blame for this appalling lack.
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I'm not MooseMom, but I was also diagnosed with FSGS, in 1972. I reached ESRD in 2013. I think many times genetics makes the difference. I was 9 years old when diagnosed and I grew up without dietary restrictions. I was encouraged to eat large amounts of protein to replace what was lost in my urine. The salt shaker was always on the table, and I ate ibuprofen like candy on a doctor's advice to treat endometriosis. I was also told not to exert myself. Fitness and exercise weren't encouraged. Yet I was fine while others with the same diagnosis reached ESRD in just a few short years, even though they lived a kidney friendly lifestyle.
Your attitude will take you a long way. I can see from your postings that you're a take-no-prisoners fighter. You're a survivor and you're going to do great!
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Moosemum, I am very curious about what all the medications and dietary changes you were given that lead to such great results in your FSGS. I know there are many different types of kidney disease, each with their own pathway towards internal destruction. I have read up a little on your condition, it is a bit similar in terms of fibrosis setting in. I am just curious about how yours was treated.
Athena, I was diagnosed with fsgs in Jan 1992 while I was living in the UK. The previous July, I had given birth by C-section; I had been confined to the hospital for 4 weeks prior to that with pre-eclampsia. I had been told that my kidneys were about to go, so C-section it was. Everyone thought that all would go back to normal, but at my next post natal check up, I was still spilling a lot of protein. In Jan I had a biopsy, and fsgs was the diagnosis.
Back then, no one knew much about it. I was told that I'd eventually I'd develop hypertension. I did about 2 or 3 years later, and that was treated with various meds. No one told me anything about the other complications of CKD like high blood lipids, etc. I was never given any dietary advice.
I went back for regular checkups with my GP, and since my bp was well controlled, there wasn't much more I was told to do.
Turns out my son was diagnosed as being on the autistic spectrum, so any thoughts about my kidneys went out of my head.
Fast forward to 2003. I moved back to the US, remarried and had a physical exam for insurance purposes in 2004. My results astounded everyone and I was immediately referred to the nephrologist within the practice. I was still on bp meds and those remained unchanged. I was started on pravastatin, Tricor and Zocor to control my high blood lipids. Those meds worked immediately, and I've since never had any more trouble with that particular problem.
What happens in fsgs is that for some mysterious reason, the glomeruli become inflamed. They heal, but the healing results in scar tissue. The glomeruli gradually scar over, and the patient is left with less and less normal tissue until there is so much scar tissue that the patient cannot live without dialysis/transplant.
So, the idea is to slow down the scarring process as much as possible. It is my understanding that there are two paths to this end. Some nephs treat their fsgs patients with steroids (prednisone), which makes sense as prednisone is an anti-inflammatory.
However, pred is a powerful drug with many side effects, so other nephs treat their fsgs patients with cyclosporine in the belief that suppressing the immune system will result in a slowing down of the sclerotic process. Of course, cyclosporine has side effects, too. This is where medicine becomes an art. Each neph decides which mode of treatment they prefer.
In summary, treating CKD is a two pronged process, depending upon the underlying disease. I can only speak for fsgs. On the one hand, a neph needs to control the side effects of CKD, mainly high blood lipids, hypertension and, as renal function declines, hyperkalemia (too much potassium in the blood) and too much phosphorus in the blood. On the other hand, a neph tries to treat the underlying disease itself.
So, to control blood lipids, I took statins to control high blood lipids.
I took three different meds for hypertension, each working in a different way, all in concert.
I took sodium bicarbonate tables to control potassium.
I ended up having to take phosphorus binders for about a year before I got a transplant to control phosphorus.
I never needed treatment for anemia.
I took cyclosporine to put me "in remission". I had always been told that there would be a time when the cyclosporine would cease to be protective and would become toxic, and I reached that point once my egfr dipped below 20.
From 2004 to 2012 when I was transplanted, I had 8 pretty healthy years during which my neph and I did everything we could to delay the onset of Stage 5. I think we did a damn good job.
Oh, and I strictly followed the pre-renal diet. I was very hard on myself. If there was a food that I knew was not good for me, I was not tempted by it.
Like Deanne said, some of with fsgs can eke out many good years before having to think about dialysis, while there are many others who seem to succumb very quickly.
There is a LOT of research into kidney disease despite what you might believe. The problem is that the vast majority of CKD (at least here in the US) is caused by hypertension and type 2 diabetes, conditions that many people have without realizing it.
It would be much easier to prevent CKD than to cure it. If more people went to a doctor for regular checkups, CKD would be identified more quickly and could me better managed. Manageable CKD doesn't have to slide downward to ESRD in all cases.
In your case, a better idea than curing CKD would be to cure diabetes. THAT's where the research efforts should go.
I hope this long, dull post has given you some answers. If you have any other questions, please don't hesitate to ask. I can't speak to everyone's experience, but maybe telling my own might help you.
Keep posting, learning and asking! :2thumbsup;
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I've read a bit about dialysis patients not wanting kidney transplants. My husband was diagnosed T1 at 10 years old and has been T1 for 33 years, on his third insulin pump (he was one of the first few in Canada to get one) and he would never give it up and on hemodialysis for 9 months now. He absolutely hates dialysis. Hated it most at first because he hates the hospital, hates it now because he doesn't feel as good as he thought he would. He was not interested in live kidney transplant at all (from me or his children) as he wouldn't put any of us at risk to help him (his words not mine). However, the tx team wants to put him on the list for kidney/pancreas. The thought of being off dialysis and "cured" of diabetes has really got him motivated. Could be 3-5 years though.
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Transplant was not my choice. The transplant meds still scare the willies,out of me for several reasons. It is not a cure. But instead it is another treatment option. Many do well with transplant, some fair worse.
It is an individual choice in the end. Having had two prior cancers, both early and cured surgically, I,am just,not willing to take on that risk at this time. I also understand all too well the complications of immunosuppressives.
My team initially forced me into transplant evaluation and I had my colonoscopy and cystoscope, than you very much for that wonderful experience, in,preparation. However, I,asked for a dermatology consult due to my extensive sun exposure as teen on Cape Cod. That is when they found an ally melanoma. That was also the last of them Forcing me and my wife down a path I,was not comfortable with at all deep down.
Lastly,,the more I learned about renal,donation, the more adament I was not to look for or accept a kidney for anyone in my family. There are very real dangers associated with donation including 1/3000 risk of death. There is also a risk of ESRD later in life for the donor as well. Sadly, these issues are completely glossed over by the media and the transplant teams Iin Many ways.
The bottom line with any medical procedure is to know and understand as best you. Can the risks, benefits and alternatives for any given choice. You must also feel,comfortable,with the risk of complications because,they do happen. If you cannot accept that risk. Then perhaps, you should not proceed with that procedure.
For,instance,mImhad radiation therapy while in medical,school which places me at increased risk for a vascular necrosis of my hips. Essentially, losing the blood supply. That is also,one of the potential complications for transplant from the high dose steroids at induction of immunosuppression. Combining thoses risks together seemed prohibitive to me given how much I hate being cut on. I just don't want to walk down that path at all.
So, learn all that you ca. And make your choices carefully and be willing to accept whatever path it will take you. These are not at all risk free choices. In my case, I feel most comfortable with daily dialysis, well 5 days a week at present and likely 4 days a week if I,go to the Baby K.
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Dear Peter
Because I strive at all times to educate myself with what I am dealing with, the downside of doing this is that things are always FAR WORSE than they might appear to the more blissfully ignorant! I already know too much about the risks of transplantation to know that it's certainly not the light at the end of the tunnel - not by a long shot. In fact, I would describe it as one of the worst "false hope" type of hoaxes in medical history (I'm sorry if this may offend some, this is my strong personal view). So many people place so much trust in this option like it's the Holy Grail.
There is no reason to rejoice in getting a transplant. You're living on borrowed time and a prime candidate for a host of life threatening complications like cancer and some bizarre sounding infections, which are just as horrific as the original disease. I would never allow anyone dear to me to donate one of their kidneys. I shudder in horror when hearing of parents receiving a kidney from one of their offspring for example. This ignorance about the risks of donating kidneys is being spread by the medical profession.
I have always been an independent person and my personal happiness has always been based on what I can do myself and not relying too much on others. The prospect of being very sick and relying on hospital/doctor/social welfare type of support fills me with unbearable dread. Other people my age are in the their prime of life n the workforce, whereas I am already someone who's just fallen by the wayside. I still have a reasonable amount of good health to sustain me but when/if that goes, there will no hope.
Best to make as much noise as I can for worthy causes like more kidney cure medical research while I still have my health. As for the final solution, I think I will tell both my guys that I just want a good painless euthanasia option when the time is right. They can stick their renal replacement final solutions where the sun doesn't shine, if that's the best they can offer.
I'm angry not simply because I have no future but because I am now living in unbearable fear and depression about the future. My enjoyment of life has been snatched away. I now regard myself as having an unacknowledged terminal disease that is simply being ignored.
Perhaps I can find some enjoyment in fiercely advocating for better research & treatment. That does fill me with considerable purpose. I may get to meet quite a few interesting politicians before I'm done. At least if I had cancer, I'd find a lot more support for the cause of better research for a cure. With CKD, it will be an uphill battle to just get recognition that a cure needs to be found while everyone is still only focused on finding better dialysis machines.
Once again, I'm sorry if my post may be upsetting or depressing to anyone. It is not my intention to upset any kidney disease sufferer. I think anyone living with ESRD is as heroic and admirable in human spirit as you can find on the face of the earth. I wish I had the same endurance & fighting spirit as the rest of us guys.
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I already know too much about the risks of transplantation to know that it's certainly not the light at the end of the tunnel - not by a long shot. In fact, I would describe it as one of the worst "false hope" type of hoaxes in medical history (I'm sorry if this may offend some, this is my strong personal view). So many people place so much trust in this option like it's the Holy Grail.
There is no reason to rejoice in getting a transplant. You're living on borrowed time and a prime candidate for a host of life threatening complications like cancer and some bizarre sounding infections, which are just as horrific as the original disease. I would never allow anyone dear to me to donate one of their kidneys. I shudder in horror when hearing of parents receiving a kidney from one of their offspring for example. This ignorance about the risks of donating kidneys is being spread by the medical profession.
I'm not offended, but I think it's only a false hope if it's presented as one. For many people, transplant can be the best of several bad options. Yes, it's living on borrowed time--actually on time purchased at a high price. The question, like anything else, is how much do you want that time and what are you willing to go through to get it?
Also, as much as I don't want to come off as Pollyanna, I make it a point of rejoicing in the fact that my daughter is alive right now and seems like her old self for the most part. When my parents were kids, this would have been a death-bed story with the parish priest playing a larger role than the doctor and only grief and memorabilia to show for it all. When I was a kid (in the 70s) I guess I might have squeaked by (actually, it would have overwhelmed my family dealing with other medical issues simultaneously). Today, it's still a terrible situation, and (speaking of research) I'm not sure it's even that much better than 20 years ago, but we are coping, and I feel that I am carrying out the most important work I have in my life.
I will beg, borrow, or steal whatever time I can for my daughter. I'll cheat the reaper if I can. It occurred to me that if there is an undertaker for kidneys, maybe there should be a mythical kidney reaper as well, a bit shorter and a little less grim. Let the greater Death wonder why the kidneys have been reaped, but he has not yet been called. It's kind of hilarious in a way--Death waiting like the Maytag repairman.
Research is much slower than it ought to be, but I think that 20 years could be enough to get something real in place (but again, what really happened in the last 20). So a transplant may not be a cause to rejoice, but I think it can be a calculated risk. I totally agree with any adult who forgoes one for themselves, but I do not see a reasonable alternative.
[edited to fix a typo]
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I agree wholeheartedly with PaulBC that transplant is "only a false hope if it is presented as one." At no time did anyone on my team suggest that a transplant would be a "cure". In fact, I was reminded over and over and over again that tx is a treatment, perhaps a better treatment FOR ME than dialysis, and I was well versed in the possible side effects of the meds. We are all living on borrowed time.
Whether or not a patient feels comfortable with having a living donor is a very personal question. Renal failure affects the entire family. One may shudder at the thought of an adult child wanting to donate to a parent, but that adult child may not be able to live with him/herself knowing that s/he can save his/her parent's life yet does nothing. That parent may have other children and a spouse too look after. So these are personal choices, and we are in no position to judge.
But having a living donor is pretty rare in the grand scheme of things. Most people are transplanted with a cadaveric organ that has been offered by a grieving family. I KNOW that my donor's family felt comfort in knowing that their deceased loved one saved the lives of 5 people.
I rejoice in having received a transplant every single time the sun rises in the east. You bet there can be complications from the meds, but OMG there are complications from dialysis, too. I saw them in my mother in the five years she was on D. My cousin almost died from peritonitis while he was on PD. We are confronted with a hideous disease and have choices to make.
While I am not offended by your strong opinions about transplantation, I do confess to being baffled. I can't agree that transplantation is a "hoax". For me, transplantation was indeed the Holy Grail, even if it is somewhat tarnished and pitted and imperfect. No one is forced into this type of treatment.
I understand your anger, rage coming from a feeling that your future has been taken away and that your joy in life has been snatched from you. I felt those exact same things. I spent thousands of dollars seeking emotional and psychological help. I spent a lot of time and energy constructing every coping mechanism I could find. I educated myself about my disease and dialysis, and while this was a good thing in theory, I discovered that the more I learned, the more frightened I became. More knowledge served to overwhelm me.
For me personally, the only thing that finally gave me peace was receiving a new kidney. I have done well, and I am coping just fine with the meds. I have no underlying health issues (like Hemodoc and his history of cancer), so tx has given me my life back. I am perfectly well aware of the possibility that this kidney may one day fail or that the meds may cause cancer or something else, but the spectre of dialysis has been taken away for the time being, so I am going to enjoy every day of peace that I have been granted. Transplantation has given me hope; I understand all too well the feeling of hopelessness that you've described.
Like you, I shuddered at the thought of having to rely on anyone; I'm as independent as the next person. I did not believe that dialysis would allow me to maintain my independence. I did not like the idea of having my disease impact anyone, so even though I planned to do NxStage and dialyze at home, I was never naïve enough to believe that this would not impact my husband in any measureable way. So, tx has allowed me to remain independent. There are people here on IHD who don't think twice about having an adventurous life while on dialysis. Their exploits have been documented on this forum. But I don't think I'm one of those people. But then again, maybe I could be. I didn't want to find out.
I'm living with ESRD but I don't think of myself as heroic. Don't put us on a pedestal. Everyone has a cross to bear.
I'll be the first to agree that transplant is definitely not for everyone. But that doesn't mean it is for no one!
Finally, please don't worry about offending or upsetting anyone on this forum. We strongly encourage people to express their deepest fears and joys. This is a safe place. There is nothing you have posted that at least one of us has not experienced, too. :cuddle;
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I already know too much about the risks of transplantation to know that it's certainly not the light at the end of the tunnel - not by a long shot. In fact, I would describe it as one of the worst "false hope" type of hoaxes in medical history (I'm sorry if this may offend some, this is my strong personal view). So many people place so much trust in this option like it's the Holy Grail.
There is no reason to rejoice in getting a transplant. You're living on borrowed time and a prime candidate for a host of life threatening complications like cancer and some bizarre sounding infections, which are just as horrific as the original disease. I would never allow anyone dear to me to donate one of their kidneys. I shudder in horror when hearing of parents receiving a kidney from one of their offspring for example. This ignorance about the risks of donating kidneys is being spread by the medical profession.
I'm not offended, but I think it's only a false hope if it's presented as one. For many people, transplant can be the best of several bad options. Yes, it's living on borrowed time--actually on time purchased at a high price. The question, like anything else, is how much do you want that time and what are you willing to go through to get it?
Also, as much as I don't want to come off as Pollyanna, I make it a point of rejoicing in the fact that my daughter is alive right now and seems like her old self for the most part. When my parents were kids, this would have been a death-bed story with the parish priest playing a larger role than the doctor and only grief and memorabilia to show for it all. When I was a kid (in the 70s) I guess I might have squeaked by (actually, it would have overwhelmed my family dealing with other medical issues simultaneously). Today, it's still a terrible situation, and (speaking of research) I'm not sure it's even that much better than 20 years ago, but we are coping, and I feel that I am carrying out the most important work I have in my life.
I will beg, borrow, or steal whatever time I can for my daughter. I'll cheat the reaper if I can. It occurred to me that if there is an undertaker for kidneys, maybe there should be a mythical kidney reaper as well, a bit shorter and a little less grim. Let the greater Death wonder why the kidneys have been reaped, but he has not yet been called. It's kind of hilarious in a way--Death waiting like the Maytag repairman.
Research is much slower than it ought to be, but I think that 20 years could be enough to get something real in place (but again, what really happened in the last 20). So a transplant may not be a cause to rejoice, but I think it can be a calculated risk. I totally agree with any adult who forgoes one for themselves, but I do not see a reasonable alternative.
[edited to fix a typo]
Paul, :oops; I must confess that all my previous posts were rants that were only focused on my existential angst with this disease. I haven't once considered what it must be like for a child or a parent of a child with renal impairment. It's terrible to know that children can also be afflicted. I do know of a young man in the community that I am part of who has recently donated his kidney to his son, who was born with serious kidney impairment. It's a very heart wrenching case. The boy is not yet even 4. He was not doing well on D and wasn't going to thrive, so a Tx was the best that medicine had to offer. It was quite a complex long operation. One can only pray sometimes.
If I had normal kidneys and a child I loved was suffering from renal end-stage, I could see myself doing the same quite frankly. No sacrifice is too great for a child, and this is coming from an adoring Aunt (I'm becoming a bit misty eyed). I am so happy to hear that your daughter is doing so well on dialysis. How old is she and how did she develop kidney issues, if you don't mind me asking?
But I have to say the subject of children only fuels my deep-seated anger at the medical profession. I know there is a lot of renal research that is being done, and in concert with other fields of medical research that is having a synergistic effect on kidney understanding. But it's all too little, too late for many of us. They needed to have been be far more productive over the last 20 years for them to have some better solutions for us today.
Having and maintaining hope can be exhausting at times but not having any hope is even more exhausting and debilitating. I am currently investigating a new clinical trial over here where I am, I will post about it in another thread soon. (This could be my very own Tyrell Corporation! :urcrazy; :rofl;).
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I'm excited to hear about your clinical trial!
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Paul, :oops; I must confess that all my previous posts were rants that were only focused on my existential angst with this disease. I haven't once considered what it must be like for a child or a parent of a child with renal impairment.
It's OK. We all come at this from different perspectives, and yours is certainly a valid one. Frankly, if your only options turn out to be dialysis or a transplant, I would hope you would change your mind about those treatments, but I'll leave it at that.
I sometimes feel unworthy to be here, posting up a storm, when I have my health and can view dialysis as an abstraction. Life with my daughter on PD is actually very normal right now, just a lot of extra work.
Knock on wood. Of course it can't go on like this indefinitely.
I am so happy to hear that your daughter is doing so well on dialysis. How old is she and how did she develop kidney issues, if you don't mind me asking?
She is 9 (8 when it happened last Fall). Her condition is C3 glomerulonephritis, but this is more of a description than an explanation. It came on very suddenly. She has always been active, used to swim 3-4 days a week with a team, and in fact had been swimming laps 5 days before we had to take her to the hospital. Progression was: (1) feeling a little under the weather (2) still tired, why isn't it going away? (3) why is she so heavy? (edema) (4) See the pediatrician, no obvious explanation, but a urine test... then a blood test... then a phone call to get her to the ER right away (potassium through the roof along with every other sign of kidney failure).
Still no actual reason for any of this. No family history, nothing in genetic tests, just a complete mystery.
But I have to say the subject of children only fuels my deep-seated anger at the medical profession. I know there is a lot of renal research that is being done, and in concert with other fields of medical research that is having a synergistic effect on kidney understanding. But it's all too little, too late for many of us. They needed to have been be far more productive over the last 20 years for them to have some better solutions for us today.
You have every right to be angry. It would be a lie to say that the medical research community has done as much as they can for kidney disease, or even that they have done a small fraction of what they should have done. Medical research helps people, but it is driven by the same trends as any other field. As far as I can tell, kidney disease is "unfashionable" in the research sense. For a really brilliant, driven researcher to get into it, they would either have to feel like they're on a mission (e.g. if they have had a personal brush with it) or just find kidneys fascinating in their own right (which they certainly are) to the point that they are more interested in doing this work than in getting the most recognition. I'm sure that there are some people in both camps, but it isn't the kind of critical mass you would need.
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PaulBC, you have every right and reason to be here.
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PaulBC, you have every right and reason to be here.
Hello Paul I agree wholeheartedly with MooseMom's thoughts !
It is wonderful how well you inform yourself to assist your daughter ...
... She is a very lucky girl to be surrounded by such a caring family
and I do wish you and your family all the best. :grouphug;
Best wishes and good luck from Kristina.
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Thanks for the support! I think this is a great group, but I also want to make sure I don't come off as too glib about things that I do not experience first hand. After the initial panic about my daughter's condition, my engineering instincts kind of kicked in, and I see this as a big, long term problem, hopefully solvable one day. I would probably feel very differently if I were the one who had to go through with this, and I try to keep that in mind.
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Paul, I just want to echo what Moosemum & Kristina have said. You certainly belong here. I have already enjoyed the many posts you have made, even though I have not been a member for long. Can I just add, that where diabetes sites are concerned, parents of T1 kids certainly don't make apologies for contributing on Type 1 forums. They care for kids with the condition and therefore belong. Likewise, as a parent of a child on D, you certainly belong here. Like you, I too wish that one day this problem will be solvable (or salvageable). Our prayers are the same.
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I'm excited to hear about your clinical trial!
So am I! It may or may not go ahead though. My Neph may give me advice that it's not something he may recommend for me. He's in discussion with the biomedical company this week! I actually found this company myself & have referred them to my Neph. There is a mutual interest already I have noted, ie my Neph is interested in their work and they're interested in finding Nephs who want to be part of their clinical trials. It's as scary as it is potentially exciting. Emphasis on the 'potential' here. More soon.
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Thanks for the support! I think this is a great group, but I also want to make sure I don't come off as too glib about things that I do not experience first hand. After the initial panic about my daughter's condition, my engineering instincts kind of kicked in, and I see this as a big, long term problem, hopefully solvable one day. I would probably feel very differently if I were the one who had to go through with this, and I try to keep that in mind.
Actually, you may not feel all that differently if you had to go through this. There is indeed an engineering component to dialysis, very much so, but along with engineering, there is biochemistry to consider, too, and THAT presents the biggest problem.