Hello - what do readers think about conservative management of kidney disease instead of having any form of dialysis. I ask this question because now I have been diagnosed with low gfr 17 and high creatinine 440 it looks as though some sort of dialysis is inevitable. I also suffer with chronic insomnia for which I have to take medication and clinical depression. My quality of life is not good with all these co morbidities. I also have insulin dependant type 2 diabetes. All that I have read about dialysis I feel will make me feel worse and I am not sure I can handle that. My poor husband thinks that once dialysis starts I will be all singing and dancing again - how do I tell him that this will change our lives forever - I think he has his head in the sand somewhat. We have been married 33 years and I adore him but I think I will turn into a shadow of my former self. He is going to New York on Friday with his daughters - I should have been going but I am not strong enough so this has really upset me. I haven't had the results of the biopsy through yet so that is another thing weighing on my mind. It just does not stop. I just do not want to turn into a living shell of my former wonderful self. I am 71 years old - I would snap up a transplant if one were available but perhaps I am too old now. So should I go gentle into that goodnight with conservative care or fight with what little reserve I have left - thanks for reading.
controversial topic: Hello - what do readers... - Kidney Disease
controversial topic
Hard question.ive heard dialysis can do a great deal of good but only you can make that choice for yourself.
You say you dont want to become a shell of your past self, but then you mention you are not going to New York with your Husband and Girls because you are too weak....I was also terrified of Dialysis...but after starting home PD with an automated Cycler while I sleep..I realized most of the horror stories of Dialysis were simply not true...and my Life is so much better, I forget many times that I am a Dialysis Pt...of course you should make your own decisions, but why not try Dialysis and see if it works for you before giving up....Yes, it most likely will be Life Changing...a good change...
And next time they go to New York, you might be feeling excited to go...traveling with PD is pretty simple
You're at a crossroads, not knowing what to do. It's hard, for sure! We, too, came to that same crossroads when my a hubby, also a T2D, faced total kidney failure. At the time, toxins building up in his body were playing a big role in his insomnia, mood, and more. He wasn't the same man he was before. He rambled through the house at all hours of the night, nodded off at random times, he had digestion issues that sent me out in wee hours of the morning for meds, his back hurt, and more. His nephrologist knew he was close to needing dialysis and recommended dialysis followed by a transplant. But he was in denial - his soaring blood pressure finally forced him into emergency hemodialysis to bring it down. (Later, he transitioned to peritoneal dialysis.) The change was immediate He came home no longer tired, his insomnia disappeared, and more. Yes, there were some restrictions - he had to increase protein, lower potassium or phosphorus, etc., but we could deal with that. We then decided to get on the transplant list - since we were mostly retired we had some time on our hands. That process forced him to get a heart stent. We were bummed. But the cardiologist explained the stent would be viewed favorably by his transplant center, his cardiac system was now functioning optimally. After all, most transplants went to diabetics, centers knew how to work with them. He was right. Exactly one year after dialysis, my hubby accepted and received a deceased donor kidney with conditions at age 71. Seniors often receive kidneys that are from older individuals or kidneys previously discarded with conditions - the best kidneys are reserved for younger people. We were fine with that. (Our transplant center offers kidneys to those 75 years old and younger.) In retrospect, we are exceptionally grateful with our situation today. My hubby has returned to his normal way of life. Life is beautiful. I'd like to add that my hubby's grandmother and other relatives succumbed to diabetes without the luxury of treatments available today. Their deaths were often slow and terrible - bloating, wasting, and more, so the assumption that this is an "easy" way to go isn't often true. But hospice and palliative care also exist today. So look carefully at all your options and treatments. You have choices! Moreover, others have also walked the path you're on. You're not alone! So reach out when you can. We all care about you. Sending hugs and encouragement that you find your way forward with purpose, clarity, and peace.
Only a one year wait for a kidney! Where do you live? I wish I could move. It's 6 years here in Minnesota.
I live in Northern Virginia. We got on the transplant list with Inova in Fairfax but it had a very long wait list which was unacceptable to us. So I researched further and discovered the Hume Transplant Center (Virginia Commonwealth University) two hours away in Richmond had a shorter wait time. So double-listed with them. Inova willingly shared labs with them but Hume requested we also provide a heart scan which we did. Following the scan and stent, Hume then transplanted my hubby. Throughout, I discovered some transplant centers have the scientists and lab equipment to "clean up" or "repurpose" kidneys that were previously discarded. These are also largely teaching hospitals that literally graduate doctors - so they're always researching, training others, and addressing patent needs that other hospitals don't touch. There are two great websites that can open a world of opportunity for those looking for kidneys. The first one is straight forward. The second adds information on qualifying and catching flights, etc. The last one is run by a kidney transplant lady. Where there's a will, there's a way! I hope to hear that you, too, have managed to improve your life through a transplant. Please reach out if you have any questions.
srtr.org/transplant-centers...
Thanks for the links.
Good morning, fartikins, I’m sorry I don’t have advice about dialysis but I want you to know that you are not alone. This is a site full of wonderful, caring people. We all care. I’m sure there will be people on here who can give their experience which may be similar to yours. Don’t give up and try not to feel overwhelmed. You are in my prayers. God bless
I worked 35 hours/week after starting dialysis. I also did a lot of advocacy, volunteering, traveling with Ambassadorships duties etc. I am a firm believer in not fighting but in acceptance and overcoming the obstacles. Most times it's about attitude and finding what really works to help you feel like YOU. It IS a lifestyle change but is DOABLE!! I've been at CKD for 40+ years, dialysis 20 years, worked 3 different jobs (not all at once), volunteering etc. Educate yourself, empower your friends and family and learn to self manage your care and health so you are not just a shadow of yourself. It can be done. Ive known many to get a transplant after age 65. Blessings
From what I've read, in center hemo is the hardest on folks. Sadly that's what I'm stuck with when the time comes. I can't have PD because I have had multiple surgeries and am full of adhesions, internal scars. So many people who can do PD or home hemo talk about how much better they feel. 71 isn't too old for a transplant at many centers. Don't let your depression tell you it's time to go. Try to find a therapist who specializes in health therapy or focuses on clients with chronic health conditions. It made a world of difference for me.
I too have had multiple abdominal surgeries for PD catheter placement and removal. I've also had multiple abdominal hernia surgeries. I asked my Nephrologist if I had to go back on dialysis would I be able to do PD again and he said yes. You might want to get multiple opinions on the matter. I much preferred it over in center hemo but it can be difficult. The dialysite bags are 5,000 ml and quite heavy to pick up and move around. In my case with Fresenius, they wanted me to have a month's worth of manual PD supplies on hand and then a month's worth of machine supplies on hand. It took up half of the inside of one of the bedroom closets and a large chunk of floor space in my bedroom. Also, some people including myself have trouble draining properly. When drain time came, I would have to sit on the edge of the bed and even stand up do a little dance to get all the fluid out of me. But, as I said, it's still better than in center.
Ride this train to the wall. Don't rule out dialysis or transplant.
So, without direct experience, I suggest PD as the preferred method since you can do it at home. Extreme dietary changes can make a difference but you have to treat all your conditions and you have not researched this and it requires skilled professional advice. It is essential to be your own advocate. Best of luck to you.
Hello fartikins, I feel your pain and have experienced the same feelings. I am 70 and have always lived a very active life. I am a do it yourself person and always took care of things around the house. In 2017, I contracted an autoimmune disease that caused total kidney failure. I was in the hospital for 3 weeks, walked with a walker for 3 months afterwards, and my wife pushed me around in a wheelchair for a while. I was on dialysis for a year until my kidneys recovered enough for me to come off dialysis. I had to have 8 transfusions of an expensive drug for the autoimmune disease to get it into remission. I don't have much energy anymore, I have neuropathy in both feet, and I can only work around the house for a few hours each day. I'm not telling you all this to look for sympathy. I too feel like I am a shadow of my former self but I carry on. It's been 5 years since my diagnosis and I can tell you, I had many many days where I cried my eyes out because I could not believe or accept what happened to me. It's good to be on platforms like this so you can hear the things others have had to endure. I used to be on Facebook and belonged to several groups for my autoimmune disease and CKD. I got fed up with Facebook and left it but it was fun on there while it lasted. Reach out to me if you have any questions about anything.
Hello -thank you so much for telling me your story and it has given me some hope. I have to go and see the nephrologist on Tuesday next for a progress report and I am so frightened because I do. to know what stage of gfr will show up. I have a constant UTI and take antibiotics once a day at a low dose.I had a breakdown partially because I was not sleeping and eating - I have always suffered with major anxiety and the diagnosis of stage 4 renal failure hit me like a freight train. I am trying to do the best I can with my diet but what is going to cause the major problem is the medications I now have to take. I spent 7 weeks in hospital with them trying to get my dependence on sleeping tablets down to a minimum - which has succeeded to some extent but they have substituted the sleeping tablets with a medication called Quetaiapine (Secqurel) at a dose of 75mg per night to help with sleep - but it makes me feel terrible in the day and I have lost my balance and have fallen over which I can't afford to do at my age 72. I also have to take diazepam which I know isn't good for my kidneys but its like playing Russian roulette - I can't manage without sleep - I just cannot function at all. I do not know what the introduction of the quetiapine will do to my kidney readings but I am praying that my gfr hasn't been affected by it. I am so tired of all this , doctors, pharmacists, home visits and all that does with it - that is why I had those thoughts. I don't know if I can cope with depression and all the problems that go with dialysis - its just existing really. Thank you for reading.
Have you heard of or tried Trazadone. My PCP prescribed that when I got out of the hospital to help with sleep. It was actually marketed as an antidepressant but also aided in sleep. Kinda two birds with one stone. It may help you with both issues you are having.
thank you for your reply - I am thinking of going down that route.
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