Breaking down: I'm posting again because I'm... - Kidney Disease

Kidney Disease

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Breaking down

RaviC profile image
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I'm posting again because I'm in a bad place thinking about dying. I can't leave my family. I don't know what to do. I have over researched and I am in so much fear now. My creatinine is 500 and my gfr is 35

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RaviC profile image
RaviC
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25 Replies
Bet117 profile image
Bet117NKF Ambassador

Ravi,

Please call your doctor; go into see him/ her and have a conversation about your fears; asking for suggestions.

Until the doctor tells you that this is not good, don't do this to yourself!

Go in and have a talk about the physical and mental symptoms that you are feeling and ask for help.

Reach back to us as we are hear for you!

Make the call!

B..

orangecity41 profile image
orangecity41NKF Ambassador

Please contact your Doctor for support on your Kidney Disease. Much can be done to help you. Chronic Kidney Disease can be treated. There are options for medical care.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Ravi, There is an old Native American saying that says:

“A Cherokee elder was teaching his young grandson about life.

"A fight is going on inside me," he said to the boy. "It is a terrible fight and it is between two wolves. One is evil- he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt and ego.

The other is good- he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.

This same fight is going on inside you—and inside every other person, too."

The boy thought about it for a minute and then asked his grandfather,

"Which wolf will win?"

The elder simply replied,

"The one you feed.”

― Tsalagi Tale

Jayhawker profile image
Jayhawker in reply to Bassetmommer

Thanks for sharing this with us!

Jayhawker

Zazzel profile image
Zazzel in reply to Bassetmommer

Love this!

Any1078 profile image
Any1078

Your will power is your greatest support right now. Be strong.

Practice gratitude, count your blessings daily, write them down daily morning, 10 things that you are grateful for, family, food, home, love, Being able to breathe walk, eat food.... Count them.

And do everything that you can from Satvic movement channel, on YouTube, detox with enema , fasting, find a naturopath to help u detox plz. And see some changes immediately.

Takecare. Be healthy soon.its tough, but so are you.

Zazzel profile image
Zazzel in reply to Any1078

Agree! Gratitude is the key. It helps to re-wire your brain.

Any1078 profile image
Any1078 in reply to Zazzel

The Magic , is a great read.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Any1078

Any,

Please do not prescribe treatments to anyone. You can tell people what you use and why. Fasting and using enemas is not a good treatment for most CKD patients. Matter of fact, it can be dangerous.

MLes12 profile image
MLes12

Hi Ravi,

what medications are you taking now?

Have you had a biopsy?

RaviC profile image
RaviC

Hi mostly taking BP medication. Ketosteril and kremezin . No biopsy yet. Vit d3 and Omega 3 supplements

MLes12 profile image
MLes12 in reply to RaviC

I sent you some mesaages

Zazzel profile image
Zazzel

Hi Rav, I’m sorry you are feeling scared. I’ve had fear on and off so I understand where you are coming from, but the others are right. You have the power within you to choose how you react. I sent you a long private message with some ideas awhile back. Please re-read the end of it. YouTube has some wonderful for anxiety meditations that might help.

Ryde54 profile image
Ryde54

I was devastated when I learned I had KD. I also struggled with the dying issue but got educated and changed my lifestyle and began the fight to live. The stress of thinking about the worse of it will over take you and take you deeper. You must learn all you can about what you can do to better your situation and live each day to the fullest.

EYatNKFSvdMYLIF profile image
EYatNKFSvdMYLIF

Hi Ravi,

I experienced the exact same fears throughout CKD. As soon as I found out I got in touch with NKF and was coincidentally going to college late in life. What you described as over researched is actually being proactive. And my being as proactive is what got me my Kidney. I ran for my life scared to death of leaving my loved one. In that fear, I got what they had at NKF at the time Lab Logs and every lab test I got I tracked it down throughout each time. I learned what the docs were not allowed to tell me from the research I got from NKF. I called them and sent me everything. I travelled up there once to do the Walk and though only one person sponsored me, my doc office wouldn't because they couldn't conflict of interest I guess. Coming out of the office which was connected to the dialysis center I ran into someone their FA and starting talking to her. As I ran for my life I asked anyone I saw or talked to . She gave me info that changed my entire CKD stage significantly. I had gotten Nutritionist as I started very early. (I found out I had kidney failure when my GFR was 45. I was given 5 to 10 yrs I made it to 10 yrs from the information I got from NKF. They had NKF Lab Logs from Amgen that I tracked my labs against my diet through. Well by talking to this woman, (and by talking to anyone and everyone) she told me about something I never heard of, she said I needed a Renal Nutritionist. The Regular Nutritionists were the worst for me because we need a special Renal Diet. I found one and she taught me how to eat and contacted my doctor to tell me what amount of liquid I could have per day. In my case of CKD It came down to diet and exercise. She brought my creatinine down from 2.1 to 1.9 within 6 months and as I went through CKD I followed her meal plan. I chose one day's and ate it for 6 yrs and was able to keep my creatinine at 2.5 for 3 years as a result. My doctor didn't like to alarm his patients and docs don't tell you about exercise and diet as that's not their job and they have no time to and for insurance purposes. I followed all the info from NKF. Over researching can be overwhelming but it will come through in ways you won't know until later. I learned my numbers as time went on. I am one that never had to diet or ever knew how. The things I learned I never paid attention to as it was overwhelming but became a habit. And right before dialysis I was in the ER with a UTI. They said they couldn't give me anything because of my renal failure but by tracking the NKF Lab Logs for all these years I knew my numbers. When the ER Doc heard me speak he smiled and was impressed. He said he will go check the PDR to see if he can find a medication at a lower dosage that I could take. Before he left the room he turned, smiled and asked do I know my Creatine Clearance and I did. I learned so much by habit as this way becomes a habit as by getting a copy of each lab at each appt. I don't care how much I annoyed my office girls I got a copy every appt for 10 yrs and kept them in a folder. Good thing because after 7 years they rid the records now the last 2 yrs they destroy them very 3. I have all my records no one else ever has. The doc was so impressed I knew that they gave much more respect as it makes it easier for them too to communicate. He came back and said he could give me Cephlex at a lower dosage. That saved me otherwise I would not have anything. So my point is whatever you learned so far,.... Your fear is being your anchor. It has made you Proactive. That is phenomenal. When I got my kidney, which a lot of things as to how I lost my kidneys was I was misdiagnosed and a medication blew them out. That false label followed me and created unnecessary chaos, But I kept fighting because my research became my power. Once I started speaking it kept all in healthcare in line. Well when I got my kidney and was wheeled to the staff. The person I met 5 yrs earlier yelled down the hall my name saying "EY@NKFSvdMyLif the MOST Proactive Patient I ever met!!" What you have learned so far shows you how proactive you innately already are. Your drive to reach out for help to places like here shows you how much power your fear is giving you to make it through. IT SUCKS. I so know that fear as I say each day now after my transplant as I worry I could never be as proactive as I was in then through CKD as that fear lead me to the best shape ever throughout but I am afraid of feeling that fear. Well that Fear has its purpose. Its the fire under your butt that makes you fight for your life. Its your innate survival instinct. Each person reacts their own way. But so far your fear has led you to support from these wonderful people above to give you the right guidance as where to reach out for help. It's an emotional ride that we understand. You are allowed to feel whatever you wish at any time, allowed to experience any fear or anything at any time. Your drive is there. It's important to take pit stops all the time. My fear I could not stop. I just put my all into my body. I made it to 10 yrs before dialysis. However, you are self aware. In my case in my 7th year PTSD developed facing a life threatening illness but for many other reasons. Cancer patients experience PTSD facing a life threatening illness but many other diseases do to. I am not saying anyone else will get this but it is common facing death. It's important to speak not just to your doctor, because in my case with that doc it backfired and I eventually switched Nephrologists. But it's always important to your doc regardless and speak to the right support. I wish I had known sooner because it could have been stopped but the fear had symptoms I didn't know to look for. If you notice a startle effect, etc. Being proactive we have to be our own doctor. I just used my education and by luck and coincidence I was going through my BA degree at the same time. And I got sick my first semester and I made it through. But although all that intensity helped me, info can become overwhelming. I am not telling anyone what they should do thats not my place, but I wished I knew beforehand because for me the symptoms were there for 3 yrs. subtlety. I am not saying that will happen to you or anyone else but its always okay to talk to someone whose an expert who would spot things others wouldn't. I went to a psychiatrist and he knew the minute I walked in the door. I went through PTSD from the 7th to 10 yr all the way into End Stage. But that didn't negate, belittle nor stop the power of my brain because that drive got me the information I needed. I didn't take any medication for it, but I used my education to ride it out. Not exactly the smart way to do it. But I had no intention on dying on my other half. So take the PTSD out of the equation, I still researched and used my info to guide me. I followed the lab logs and diet and exercise throughout. My 1st Nephrologist was annoying saying I am still trying to control this with diet and exercise, while he was using medicine. No, you use all. And that I knew. I followed my body and the amazing information I learned. I was told no matter what I learned nothing prepares you for Dialysis and Transplant. Oh so true. BUT My Fear and My Research it led me to is why I am here today typing to you. You do talk to your doctor and you do tell him how you feel and what you are experiencing. And if your gut tells you you are not getting enough from him, keep fighting and ask another doctor. NKF is why I am alive. The networking you come across in research the places and people it lead you to are a golden opportunity. You don't realize until later. You are extremely strong and there is abominable strength in fear. You reaching out here shows just how proactive and aware you are. Fear is the worst absolute worst feeling in the world, but for me it was my drive to save myself. I channeled it into research. You found a way to reach out for help. Guidance, for me, was my anchor. I ran for my life but learning, I found out I had to build my muscles for dialysis. I took a job intentionally as an Asst Mgr at a convenience store to keep myself moving my body and it built my muscles. I learned that from a newspaper of a sort as part of the information package NKF sent me. As I got info mailed to me all the time. I think it could have been Patient Citizens I am not sure. I still have all my info in my book case. I got in the best shape as a result. I always was physical but when I first found out I had kidney failure is when I suddenly blew up like a balloon during college I was 36 at the time. It was all fluid and took 38 specialists before I was diagnosed correctly. Everyone has their own ride. But I did this despite PTSD that hit when I was 42. So take that out of the equation because regardless of that all I did, I was given 5 to 10 yrs everything I learned even after PTSD hit still got to me to 10 yrs despite it. Dialysis and Transplant are their own separate stages but same type ride and you already have the strength to get through this one. Your fear shows it. That to me is your drive. Your loved ones are that gas to fill your drive. I don't for see you ever running out of that gas. I went to my doc and I remember forever this day. I asked him what my GFR was and he got all annoyed he didn't want to tell me. But you see, when I found out from that day years earlier my first 2 years I learned I had CKD, I took a train up to NKF with a torn acruciate and tear that also went undiagnosed ugh those 1st years, which was from the sudden weight gain all fluid, I was part of the check out staff at the NKF Walk. Well I went up by myself to fight for my life and see what I can find. I end up talking to a few people but what helped me the most was an intern at the NKF office who led me to this room where she handed me a huge envelop of all their info to take home. And from then on as I was 90 min away she mailed me everything. I ended up meeting the new Program Director on the phone 2 yrs later and we were close to this day 15 yrs later and she retired 2 yrs ago. I am now her age when we first met on the phone. They also used to have a Nurse who was amazing. I cherish this wonderful relationship I have with the former Program Director it is so rewarding. I networked naturally because I just wanted to learn and know what to do. I would call the Nurse who had told me my GFR on a calculator she had. And when after having 2 regular Nutritionists for a 1 yr and a half before I did something so simple as no one would sponsor me, just coming out of my doctors office and asking a stranger ( I don't what I said) anything I end up in a discussion I never expected learning way more than ever. Because she was telling me about a Renal Nutritionist which I never heard of one before. The word Renal through me off which I should have known I went to an LPN course 9 yrs earlier I didn't' complete, but it taught me how to read my labs, which was ironically an unknown foreshadowing. .. but learning from this woman who was outside my doctors office which was connected to a dialysis center, she was coincidentally their Facility Administrator. Just by asking her to either sponsor me or where I should ask, etc. she as referring me to a Renal Nutritionist in the end of that quick conversation outside my docs office who just denied sponsoring me. I only had one sponsor my hairdresser ... that person she told me about, that Renal Nutritionist, I called immediately. And I would always call NKF's Nurse, and ask a question then call and ask the same question to my Renal Nutritionist (which turned out to be the only one in my entire area how lucky was I to run into that Dialysis RN outside my docs office) and then go see my doc and ask him. Every time it was the NKF Nurse and my Renal Nutritionist who had the answers and who were willing to tell me. Doc's don't have time. And this experience also led me to finally change docs later at the last minute. I had done the same thing, talked to anyone, and 2 yrs earlier at a grocery store talked to a customer who turned out to have been on dialysis and she gave me a card to her Nephrologist. And I had always researched endlessly in fear and had back up plans to dialysis centers and docs etc. as a result. And I am so glad I did. I have her doctor to this day. Fear and Research led me to have unconsciously these back up plans. It's networking. I talk in general, but I was running for my life and I talked to save my life because I am not dying on my Best Friend. In reality I was petrified of death. My other half was also a great distraction of being overwhelmed in that fear and being able to switch my brain and turn over that fear into protecting my loved one. That unconscious maneuver the brain dose gives that extra energy to fight through the fear. What you have done already has planted a survival seed in your survival skill. It will pay off. I called my NKF Nurse at the store while shopping to learn how to shop and eat. I had no idea but I had no problem calling any time from the store when I was getting back on track. I remember I always called her in the produce section. And yes take shiitake mushrooms are the ones to choose they are not regular mushrooms and have the least potassium. Trust me I was clueless with nutrition. I learned we restrict sodium, phosphorus, potassium and calcium. And as time went doing all this I knew how to track my labs to my diet. That was like a mountain for me to climb to learn that but that also was unconscious. Because research and learning just leads you to where you to need to be. Not every one does what I do I was told, but that gave me a sense of control I needed to keep me grounded. I needed to know what to do and what to expect. And if someone didn't satisfy my need I kept talking until by accident even, I found someone who could. So I called my NKF Nurse she did my GFR Calculation right there on the phone. I called my Renal Nutritionist and she said the same thing. I then this day in this office with my Doctor ask him. I did so already know the answer. I did so because I had a problem with his office girls and I was like staying in a situation for too long because I was afraid to change. And well he walks in and says I'm not doing that! Ha ha thinking I was asking a urine clearance. No I just wanted my GFR. So I stayed calm, casual and a second later he caught himself and came over and pulled out his calculator and told me. My GFR was 35 last time. And as he is calculating I say 29. He finished and he goes "You know too much. " ha ha ha. Yep I was 29. My creatinine though I was able to keep at 2.5 for 3 years because I followed that one day meal plan I put on my bulletin board from the Nutritionist. That was my choice to use one. What I would do is if I had an egg in the morning I would have pasta at night. I learned how to switch to keep my protein level. I ate that same meal plan every day for 6 yrs. I learned to substitute and I would track my labs each time and I knew my Hemoglobin(Hgb) etc and all my numbers. It came naturally over time by the research. You can parallel my experience to anyone's in their own way. But you do get there. I also don't have the multiple complications or diseases others do. I just know the fear. I know what I needed to find my way through I just didn't know how to find the people to tell me how. That what research does. It guides you there. Fear is the worst hell ever ... it becomes the biggest strength you've ever known. It's the tool that fights for the answers. There are ways to calm that fear and that is finding the right doctor to help you control and get through it. I can't advise you but I wish so bad I knew I how bad the fear was affecting me in other areas. Had I known the symptoms in my case, PTSD full blown wouldn't have happened. I am not saying your going to get PTSD. I am using that example for anyone to parallel. If there was something going on in you that you didn't know and didn't tell your doctor they wouldn't know. But if you talked to him about it he would know to pay attention and notice then advice you or not. Keep that in mind some docs don't, but they should educate you and refer you to other docs or avenues that can help you. Plus they may know symptoms you are not aware of to look for. Is it your blood levels etc . Forget the PTSD substitute anything for it. Talking for me calms me down because education calms me down. My doc didn't like to tell his patients any info because he doesn't like to make them anxious. And in most cases research and education can scare the crap out of some people, but for me I needed to face it head so I can learn what to do. Education calms me down as I need to understand. I need that control. For others its too overwhelming. The research its is own course. It teaches you and in the time you have to absorb that doc appts don't give. So that was my experience and what I did to channel the fear. Regardless of PTSD in my case, nothing was stopping me from running for my life because of my fear of dying was paramount. That was it no way could I deal with that so I fought all the way through. I wish I talked to someone before hand. I wish I had known or gone to a counselor or psychiatrist along with all the other things I was doing. That would have a been a great support system. In my case it would have prevented the PTSD beforehand. I got through it. Nothing stopped me. I still keep fighting. Only I don't have that fear any more. Instead, now 5 yrs after transplant I am afraid of it. But there is the other side of this. It's nice on this side. I no longer have that fear. Instead I absorb. No matter how long it takes you are in a moment to moment experience and its just one long day. You will get here. You will know rest. As you see from what I described, I was overwhelmed in a lot of fear running for my life. It's overwhelming reading it, but I do understand what you are feeling. Thank you for finding us here. You will know rest. Eyes on the prize. That's one of them.

DadviceTV profile image
DadviceTV

The fear, uncertainty, and doubt are all normal. And to make things worse, searching online will bring back so much fuel for those. But the vast majority of the information you find is wrong, misinterpreted, or extremely general. When I was diagnosed, I was in bad shape. I had no clue I had any kidney issues, then suddenly I'm collapsing in the entrance to the ER, going in and out of consciousness, being rushed into a room, IVs in both arms, nurses and doctors rushing around, words I didn't understand being said, all to finally be told the next day "You have kidney failure". A week in the ICU and the doctors told me I had no chance of improving, dialysis was my only option (while waiting for a transplant), and that if I didn't go on dialysis, I'd be dead in 45 days. What the hell happened - how could this be - I knew the doctors had to be wrong - I have two little kids and a wife - I can't be dying. I used my laptop from my hospital bed, and everything was doom and gloom. But I'm a super nerd, and I see patterns, I question nearly everything, I consume information like a fat kid consumes free candy. Going on dialysis wasn't an option for me - it would be too much of a change to my lifestyle, and I wouldn't be able to keep up my high stress always traveling job.

I started calling, emailing, and messaging doctors, researchers, and hospitals all around the world - right from my hospital bed. What I discovered was eye-opening - the first glimmers of hope. When you look at the kidney care health outcome here in the United States compared to other countries around the world, we rank poorly. Why? We have the best technology, a dialysis center next to every McDonalds, it seems. What made other countries rank better at kidney care outcomes than the United States? What the heck - most of the countries that rank better are less developed - how can this be? A patter was crystalizing. These countries (some which are considered 3rd world) don't have the "benefit" of a dialysis franchise urging doctors to throw every patient on dialysis - they have to rely on educating the patients and making diet and lifestyle changes.

So I said no to dialysis. Never went on it. I started my 45 day countdown. I got labs daily at first as I tried to use diet and lifestyle changes to improve (a process known as "Conservative Management"). I learned a lot - and I mean a lot - about how the body works, nutrition, our kidneys, drugs, supplements, you name it, I learned about it.

Last month I celebrated my 1 year anniversary of not dying (try asking for that on a cake at the bakery). I have more energy and stamina today than I have had in over 20 years. I've lost a lot of weight (I was that fat boy in the candy shop eating everything in sight), my labs look amazing (except BUN and Creatinine), and my CKD is not holding me back at all. I discovered hope, more tomorrows, more options, more opportunities, more of what I can do.

There was no magic pill, no magical flower growing on the western side of a mountain in a remote area of an Asian country. It was looking at my labs, staying positive (stress releases hormones that put stress on your kidneys), eating a BALANCED kidney-friendly (and low inflammation) diet, working closely with my entire health care team, making simple changes to my lifestyle (controlling my blood pressure, watching my blood sugar, etc.), and a little bit of good luck. My kidneys are still damaged, and will continue to be until some new scientific breakthrough comes along - but I have my life back. I've discovered a way to live in harmony with my kidneys limitations to not overburden them, to not place stress on them, to allow them to keep me as healthy as possible.

Alternative treatments to dialysis and human organ transplant are just on the horizon. I have spoken directly with so many researchers and scientists. I feel confident in the late 2020s we will see better alternatives to dialysis that will allow those with CKD not to have to have the fear, uncertainty, and doubt that comes with thinking of our future. I am confident that by using the treatment strategy that I am currently following, I will be able to remain healthy and see these other treatment options become available.

Stay focused on small goals - learn as much as you can - stay positive about your future - and discover your new possibilities. I've documented my journey from the brink of death to where I am today online if you want to see me go from weak, slow, sickly to the high energy, amazing feeling person I am today. I have almost 60 videos (nearly one a week) from start to today online at youtube.com/dadvicetv - I think you'll find my journey inspiring.

Good luck - you can do this!

James @ Dadvice TV

Stephene10 profile image
Stephene10

Let me know your blood group so I may find you a willing donor

RaviC profile image
RaviC

Hi Stephene10 that is so kind of you. I'm AB but in the Philippines. Will this be a challenge?

Oldearkie_83 profile image
Oldearkie_83

And what age are you now? Worry if you must but It probably won't do you much good. Maybe you should talk to someone close that you can confide in. We all are facing the sure thing of leaving some day. The only question is "when". There is so much to do while we are here. I shall never finish all that there is in front of me to do but I have made it to 83 with a GFR of 23 (current to this week). If you are really concerned, have you made you will yet? Do that and enjoy the many probable years ahead of you with your loved ones and doing the things you enjoy.

rabbit01 profile image
rabbit01

You have got years to go! I was diagnosed with just 17% eGFR left and that came as a real shock. Do you know I spent the last five years pacing up and down watching my remaining kidney function slip away like the sand through an egg timer. Depressed and angry with everything. Eventually my eGFR reached 7% and my skin had turned yellow and I felt like crap. The doctor told me I would be dead by the end of this year if I did not start dialysis. I had been dreading it since day one so it was with a heavy heart that I started dialysis five weeks ago today.

And do you know what, I feel great. For the first time in five years I can see my bloods improving rather than getting worse and I feel more like the old me. I can go out with the family for the day and do all the things that normal people take for granted. Sure I get the odd off day and I get tired quickly but I feel much better than I did a few weeks ago.

Try to focus your research and energy on maintaining your kidney function rather than worrying about dying. And if eventually you do progress to needing treatment that thank the lord that we live at a time where dialysis is available. In the meantime please discuss your worries with your medical team. I do wish you all the best.

SadMad profile image
SadMad in reply to rabbit01

So you went five years with an eGFR of 17 and lower. That is encouraging as I am flip flopping around 16 on average. I just got vein mapping and was wondering why the doctors were not rushing to get me vascular access. But now I have calmed down and from reading on this site, I may not need dialysis for a while yet. I was in a panic that I needed it right away. My blood pressure is great now since stopped smoking over 8 months ago. I try to follow the DASH diet but mainly watch my sodium. I have a rare kidney disease that filters out my calcium and phosphorus so I don't have to watch them yet. I had gone on the dialysis diet and that dehydrated me and I ended up in the hospital for a few days. I don't need to limited fluids as I was doing until I actually do go on dialysis. I just have such nerve pain in my left leg that I have to use a crutch to walk and cannot exercise. So between not smoking and summer pool season over, I have gained around 20 pounds which is horrible on my 5 ft frame. I am hoping that my nerve medication will help lessen my nerve pain so I can get on my treadmill and start moving. I got to do something. Christmas eating hasn't helped. I need to go to my old saying of "One Day at a Time" and when I need dialysis, then I will start it. My next nephrology visit isn't until February so they obviously think I am stable. I was going to the ER every time I felt off to get my kidney function checked out. The doctor scared me when he said I was carrying extra fluid and started me on too much Lasix. I think the extra fluid was just fall weight gain. The transplant place hasn't called me back and I supposedly have until 02/12/2020 to get straight with them so that isn't looking good so One Day at a Time and what will be will be.

Baza3 profile image
Baza3

Hi Ravi C. I Experience the same thing. Every day. Counselling by a professional psychologist will help but not cure you. It's what I did and recommend.

hope1419 profile image
hope1419

Ravi,

As everyone has expressed, your feelings are valid. Of course I do not know your case, but I can tell you abour mine. One day I was fine, I got sick very quickly, ended up at the hospital with renal CKD stage 3. Kidney stones had caused me to get sick, After 10 surgeries, I ended up at a GFR od 35 to 40. My nephrologyst said I could manage it with diet an medication, and I did for abour 4 years. 2018 was a stressful year. 4 members of my family passed away, among them both of my parents. They got sick and ended up at the hospital for a while before passing, with me as their care giver. While I was dealing with my mom's illness after a stroke, my doctor tells me that my GFR has decreased 3 times in a row and has ended up below 20%. He said I had to get "on the list". What list?, I asked. The sky fell on me when he said "The waiting list, for a donor"... My mom passed in August, and I thought I would get better. Maybe it was the stress, On my next appointment, I was worst, an then worst. I got to 13% of function when I finally understood, I did not have many options. I know realize that I was grieving not only the death of my mother, but at the same time the loss of my kidney function and the possibility of death. That was hard, especially because my child was just 12 at the time. When last year ended I was determined that 2019 would be a better year. I put my hopes in God and prayers from everyone I know. I also followed my doctor's orders very strictly, and I joined a suport group. I read all I could about dyalisis, transplans, getting a donor, causes, possible treatments, I have tried all sort of vegetarian remedies, but mainly, I have not lost faith, and I have kept strick record of my changes. I have been hoovering around GFR from 10 through 13. I have realized that no matter what I do, I will need a treatment. So, I studied my options, wrote my story, and reached out for help.

At GFR 10, I am still out of dyalisis. I am living a quite normal life, and against many odds, prayers have kept me healthy. This weekend, I received the best Christmas present ever. In response to a news paper article about my search for a donor, I have found a match. This angel is being tested to make sure everything will be fine for this person, as it would for me. God willing, I will be receiving a new kidney soon!

All my story, just to let you know that being informed, is not over researching, you are getting informed. You are grieving your illness, because we grief it the same way, we grief the death of a loved one. You are going through the different stages. You need to go through them in the light that there is HOPE. You hope for the best, and do all within your power to stay as healthy as possible with the renal function you have. On my eyes 35% is a LOT of function. You know normal function is considered up to 60%, So, do not think about death. Think about living well, changing feeding, drinking and exercising habits. I had to give up a lot o food, I only drink water and coffee, I have learned to cook and eat healthier, but in the light of living to see my daughter grow up, that is not hard to do. There is hope. hold on to it, educate yourself on the topic, and act proactively. Try to manage your lifestyle so that you can stay well without dyalisis or transplant for as long as you can. Keep your HOPE alive!

Bunkin profile image
Bunkin in reply to hope1419

I’m so happy for you. Good for you for being so proactive. You’re right about faith. It’s the only thing that’s gotten me through this. I don’t know how people can tackle this without faith. Prayers for you for a successful transplant ❤️

Magdel profile image
Magdel

Hi, I have a friend who went on to PD almost 2 years ago with a gfr of 15. He is strong, working full time and very well. He had a lot of anger which is tbe opposite reaction to depression, but he is much better now and dealing well with all the associated issues. He's just discovered vegetarian food can taste great. I just bought him 2 books which will help you too and they are both very positive, Stopping Kidney Disease by Lee Hull and Smoothies For Kidney Health by Victoria and Jennifer Waybright. Excellent, helpful, encouraging and positive and gleaned from this website. Keep in touch and be strong, mechanical kidneys are not too far away! Watch your diet and your BP you can stave off dialysis for a long time, how long depends on your tenacity and dedication. Best wishes. Maggie. MSc.

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