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Kidney Disease
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Can't deal with this disease anymore..

I really need moral support right now. I just finished a month of prednisone I.V 3000mg and prednisone pills for one month. I start chemotherapy treatment on Wednesday in pill form. I am so sick this month. The past week no sleep at all. My nephrologist recommended Melatonin. Right now I've had such a bad cough and have been coughing up blood clots for days. I can't breathe anymore at all. I'm so sick. I am so suicidal I just want to end this ungodly disease from Hell and my life. My nephrologist said I won't feel any stronger or better for at least 5 months..I can't do this anymore. When do you feel better mentally and physically. I am a strong person normally. This kidney disease has beat me to the ground. When does it get better? Please help me. I need to make these harsh treatments worthwhile. Thank you! Any advice would be appreciated.

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Hi Smokey2014,

I am not in your situation. But I hear you and I am here! I am not an expert. But I have gone through End Stage Renal Failure, pure hell on Dialysis and now am on my Transplant. I cannot imagine what you are enduring at this moment with all you are handling. I am not on prednizone or chemotherapy. However you said your were told you won't feel better until 5 months from now. The key is that YES YOU WILL FEEL BETTER! Your doc told you so! That is what you hold on to! As much as you can't take anymore... 5 months from now, you will kiss yourself everyday that you hung on. Your doctor gave you the most important fact - that It does get better! It takes a while. It does... but Time.. Time is worth it. Time is a concept that you can control. You have find what works for you and You Will. Thinking far out is so scary but I can't imagine how frightened you are right now steering in the unknown that is so foreign to you, so new to you. But your mind and body have a innate survival instinct and will find its way unconscoiusly. There is no one more stronger than You right now! The proof is the fact you came here to reach out! Please do what ever you can to hang on. You are NOT alone. Time that goes so slow can go so fast. The only thing I did for myself was every milisecond say "Pace, Pace, Pace."And that is how I got through. That was My vision in my hell, because I was endlessly abused on dialysis by cruel people for 364 of 365 days... I had no time for them. I wanted to get better as I a serious personal situation that was more important. I saw who important in front of Me. I was. So was my other half. I lost the love of my life and best friend and everyone I knew the year before and on the 1st anniversary in pure hell on dialysis I had these vicious people doing whatever they could to make my life as hard as it could be to make sure I didn't make it on top of dying on dialysis. Aside from me ignoring them they were a nuisance in my way I was saying the same thing you do feeling such hell.. I had no time for them or anyone. My mind only had time as it was used up 24/7 just to tell each cell in my body to move to flow oxygen through the blood. All I could feel was my body down to its roots. You can endure each second and you wait until finally make to shore to collapse. You are riding out the waves of your storm and You Will Get There! I simply I would say and was damn well determined just get me onto PD dialysis and get me home. Then Get me to Transplant and get me home. Home to each of us has its personal definition. Throught I saw my own visual my mind created in front of me the whole time - a visual of a White Flag waving High Horizontally between two tall, beige, wooden stakes next to a mountain. It stating in big black lettering "FINISH LINE". I was my Olympic Trek. There is nothing more important than YOUR LIFE. YOU ARE STILL SO SO STRONG. RIGHT NOW YOU ARE STRONGER THAN YOU HAVE EVER BEEN TO ENDURE WHAT YOU ARE. YOU WILL CONTINUE TO BE. But WHEN it does get better.... IT DOES!! That is what you need to know. You will feel better in 5 mos. You WILL Make it! YOU Are WORTH WHILE. That is the key. I had no support system I had a personal life I needed to get to. I am not comparing me to you , nor should you ever compare your hell to mine or anyone elses. You are you only supposed to worry about You. Never ever put anyone else first before your own pain, your own breath. The fear you must be havng thinking ahead so long to 5 months away from now that is an eternity. That thought is too long it's extremely anxiety provoking,

If you can find shorter ways to think of time to get through each breath... pace ... pace.. pace.. and find a way to focus on the moment .. maybe try to find someone or something to focus on.. make it shorter ways of thinking ahead may help somehow. KNOW that You WILL get there is number 1! You Will you FEEL Better. You Nephrologist said YES You will. That is the most important answer. That you hold on for. You can only take what you can for the moment. Allow yourself to express any way you want, feel what ever you want, is okay. Right now your Mind is taken over by your body. You can hang on. You will make it to your finish line! I hope people on here get to you as soon as they can! I don't have your exact scenario but I am right here with you pulling for you! Do you have anyone that is a support system? Anyone? Mentally.. your body is so much need of your Mind, that is has no time to be its own mind. Its using up every bit of it. That will clear up after. And it will, Its a surreal process and you will be amazed and what your mind and body can do. Your mind 24/7 is hold up right now between you and your body. Talk to it. You are enduring a lot of shock, pain, new experiences of which is a hell you never thought imaginable. But you will reach to where you will feel better. The harsh treatments are worth while! You are! Mentally there is no expectations and accept for you to focus on whatever gets you through each second. Keep reaching out to anyone you can. Hold on to anyone you can. But hold on. Pace. Pace. Pace. Hugs!!!

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Thank you so much. I really need encouragement right now. I'm not used to feeling so sick everyday. I will hang on to your words and look to the future.Ma God bless you always.Thank you for caring.

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You are most welcome! You know its so shocking when you spend your whole life feeling a certain way and suddenly this horror creeps up on you.out of nowhere. I prepped 8 yrs ahead. I was the most proactive but nothing can prepare you for the feeling. There is a lot of trauma to it. Being sick and everyday is beyond description its a constant challange to find a way to adapt but you will. It's being thrown into basic training. But you are surviving! You are alive! And you will continue to be! When you reach your Finish Line you will never forget the feeling of what is to feel better. Its a surreal experience and everyone has their own way with it. For now I would speak to your doctor and who ever is there as well as coming here. We are here! I do care genuinely. I thank your for kind heart in all you are bearing. You not supposed to be used to being so sick everyday. This forum is great I just joined and I am so glad to have met you. I can't take away any pain but I will be here I am home all the time. And my sleep shifts. So I will see your notifications. The internet is what got me through. Hey in the middle of the night or whatever time and I am by myself and in hell i went to FB and said whatever I wanted. People out of nowhere appeared. Its survival and a wonderful surpirse. Knowing someone is out here listening.. it made me feel safe. You will save yourself because you have the resourcefulness and strenght to say Help! I would stop and take a moment for you to kiss your hand and your mind and body to say your name in thought because you did it. You got through the moment. That is what this is pace. ... pace. pace. When you know someone is out there, it can't take away but can assist the fear the anxiety, the helplessness. Your found your power even when you didn't think you could. When you know someone is there, it does lessen somewhat your anxiety and unconsciously it can slow down your pulse and it can help your body be able to endure the second into the next second. Even in a milisecond it help you better as the anxiety is not gone but sustained. Thank you for hanging onto my words because I am hanging on to you even if I am not on here. I will check in . I get notificaions instantly. The future is here for you. For now your future is second by second. And believe it or not that is one second less you have to wait to feel better. That is the goal line. Reaching out or talking or whatever is a good distraction from the pain. You will breathe better. You will. I so relieved to see others on here. I am very worried about you. I have been there in a parallel way. I am on the other side of the finish line along with the rest here, extending out our hands and will wait with you until reach the shore and reach this finish line. You are not alone. I wish the very same words to you. Rest. I will be here. You dont' have to type. Just know. You will be safe. Hugs and warmth!

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I started the chemotherapy treatment on Wednesday..

It's brutal..

Your reply back to me brought tears to my eyes..

Right now the only thing keeping me going with this treatment is your words..

Right now I have no quality of life because of all the side effects of 6 different medications including this chemotherapy pill..

I developed pneumonia because my resistance is so low but it's improving from strong antibiotics.

I do want to meet you at the finish line and hug you..your words saved my life that morning. I was desperate and did want to die..

Because of you I want to fight and live..

Thank you..

God will Bless you for helping a desperate person you don't even know..

I know when I meet you at the finish line in about 6 or 8 months I will give you the biggest hug ever...

You did save my life that morning..

No doubt in my mind..

I was sitting at the kitchen table with a handful of pills..

May God Bless you and your family always..

I'll keep you updated on how the treatment is going..

I won't know if it worked for 6 months though..

I will post frequently on how things are going..

Thank you so much again for all your kindness and caring..

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I am so thrilled for your own strength to come to this phenomenal website. I was able to meet You! We are all one on this site. I thank you for your kind words. I am extremely relieved to have these notifications to have been able to see yours at that time! I am here. And others please read, and be here as I sleep different hours. All of us be here together to reach out when we can. We are all on the same plane in our own unique way. The turmoil you endure and endured that night is real, is heard, is forever noticed. That pain that got you to that point is beyond bearable, beyond any word or definition. It is understood. I am so glad you found us on here. I am so so relieved I found this website a month ago from NKF's post on Facebook. NKF is a life saver. Know that you are not alone. Always know that people are out here. If the next time you come and no one happens to be on, tell yourself to hold on through whatever time or night because someone will be there hours later in the morning. In the meantime, keep holding to my words and anyone else's words that get your through. I always had a 24 hr Rule. Wait it out because time always changes. Never give up! Because "What a difference a new day makes." is a real statement. I also always said as I went through my worst hell, where will I be an hour from now, 8 hrs from now, a day from now. Where will I be a week from now. Then a month from now. I used to do this in my 20s with a year and 5 yrs and 10 yrs. It simply means I got to my future, and now in this case with my health I used it to get to my next pit stop. When I got to my next step.. where will I be 8 hrs from now.. that 8 hrs of pain is behind me. 24 hrs from now I got through and that time is behind me. What is ahead of me is that breath. That moment that second of relief. Pace, Pace, Pace. I will get there. As Ellen of NKF told me "Keep your eyes on the prize." The only prize you need on step one of your trek is that second you get to drop, rest, breath. You absorb, you fight, and go for that next taste that IS ahead of you. As you focus only on the Pace you are at.. eventually without realizing.. this pure hell will be 1/4 th over. 1/4 behind you. Later a 1/2 etc. But you don't need to konw that now. You will see that after. That realization is one of the phenomenal prizes you get after the Finish Line. Its so worth it. I am deeply touched you heard my words. I am way more touched I was there with You. You made my own experience worth it. I just came out of that Finish Line. Every step into our future is a new lesson. And you just taught me where I am at now. I instinctively unconsciously learned and passed on what other strangers gave to me from my first day on. Its a surreal process what you are going through. I got through the unknown from those I met along the way in a fluke, from being so lost from second one throughout. I have met a stranger maybe only once, but is never forgotten because somehow that person saved me and got me me through the next step into the unknown path ahead. We have entered into a unique special population with whom we can relate. And I remember the very beginning, the wonder what is this all about. That fear how will I know what to do. The whole experience was culture shock. What is this foreign place I am in? Its a fog, its hell. But meeting you I see all those people I met along the way I was too sick to really grasp in that fog. We are patients we just need to be guided we can't think. But now finally I can. And I was taught by these special people I met along the way if never seen again to those I do, and what they passed on to me, I now pass on instinctively. My reactions is what this incredible new wonderful website I just joined is all about. We all have our own unique specific ethos yet we all can contribute to each other in our own very special population we have entered. Its a more powerful one because its simply natural. And the world we use to be in when we are healthy, that plane is not this one and other in the old plane can't understand. Here You are not alone. Here we throw you that rope. Invisible, wheter I or others are physically here or not you now know we will be, we are and will get to you. It's not the abyss because there is an answer. The echo of your yell for help will be heard. It will not linger into an empty dark cave. You echo will stop it will be cut off and you will be safe. You are very precious. I am so sorry you have to endure this chemo. I am so grateful you were able to put down those handful of pills. I see you at your kitchen table. I understand. Ty for reaching out. Ty for your strength to make it through to give yourself the chance you so deserve. Never give up on yourself you are learning in a torturous way a new phenomenal part of you and more part of You to love. The body has an innate survival skill... but to actually watch it... that is another gift you will receive after the Finish Line. You can't expect to notice these things in what your enduring and the whole miserable process. Rewards are there and its worth. Feeling better. Its the best breath you will ever know. I will be there throughout, invisible where ever you are. Ty for explaining the pnemonia, chemo and your quality of life. I am so glad the antibodics are helping! There! You made your very first step. Your very first Pit Stop! You are improving! You got to feel it. I know its minute. But that is part of the Pace Pace Pace. Any moment you get to get a second out of hell.. is one step closer. I so appreciate every word you wrote to me and I hold it dear. I am so glad we met. I want you to live. I want you to keep fighting to keep wanting to. I cannot possibly imagine what your first treatment or any treatment of chemo is like. Ty for taking me with You. I will be here throughout even when I am doing what ever I am in my life where ever if not on here. If not I eventually will be. Especially when I get the email notification you left a message. I am deeply interested in your progress of course. It's okay if it takes 6 or 8 months. I will be here I am not going anywhere. I may miss a few days or a week max but when I get the notifications I will be eager to see yours! I have my big hug waiting for you. I am standing under that waving white cloth way way way high beyond high above me. It's got a nice breeze out here. Perfect weather. I and I am sure anyone on here who has replied to you or reads this is right next to me here cheering you on, with balloons, flowers, and a nice big glass of water to quench that thirst of yours after your Olympic Marathon. But know that we here will be holding out bottles to you as you pass by throughout your run. You have a huge support here. You will not be forgotten, You will never be alone. We are here for whenever you wish. No matter how long in between. Know we understand. I wish the same sentiments to you and your family. Desperation is natural. Coming to You, someone I may not have met before, was because of Your own words. You knew to reach out and what happened was an instictive reaction, an unspoken unconditional bond, as My having just come to where I am. We are Patients. And what I did not realize until after my reaction was actually unconsiously taught to me. I in my fog going through all of what each of us ourselves go through, came across those strangers, those others I was in no condition to even pay attention to what was happening. I was simply desperate in so much pain just get me to help get me there get me relief in my unbearable impatience. So much chaos this new dimension is I had no clue as I progressed I was learning as well. I passed my first Finish Line and the batons they passed on to me I naturally pass on to the next one after me. That was You! :) This is so cool to see. This is the unspoken bond. We are Patients and our own society. We understand pain. We understand suffering. We understand trauma. We know to reach out. We know to notice. But with You it was natural. And I did not think twice. I am honored I got to meet You. You are very special precious kind warm human being. Easy to care about. Your own words your own writing shows the wonderful person you are. As you go through this awful treatment I will be holding you up as you endure. Not knowing if the treatment will work in 6 or 8 months is its own unbearable hell and worry. Its okay to. No one can really tell you not to think about it. Yet you will find your way to get through. You brain has to filter to function. You can't carry all that on your own. So feel whatever you want to feel, whatever mood, emotion, reaction. Talk to whomever you feel comfortable. It helps filter the brain and frees it up to give you more energy to help your body. It takes enormous endurance, courage and strength waiting on results and the unknown. I am so so sorry you have endure all of this. Its more than anyone can take. But giving yourself what you have, allowing others to be there, seeking us with out with your own proactiveness, your innate determination will help you find what you need to get you through. You already have through the first steps! You did it. You got through Wednesday. You will get through each step of the way. You know what awaits ahead - that rest. You will get there. You will make it. You will. You have so much worth. I know already the Champion you are. You made it passed your first marker! You are the true Title of an Olympian. I see you in the distance and I so look forward to watching you approach me closer and closer until you cross this Finish Line! Our Big Hug Awaits. Just always remember to pace yourself. Pace. Pace. Pace. :).

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Heartfelt and beautifully said! Thank you for being such an inspiration.

Pace and taking care is key. Anxiety is normal- it is a process for all of us regardless of our disorder ..

" Keep Your Eye On The Prize!"...

EY and Smokey...I care about both of you and will remember you in my prayers.

Please reach out as we are here for each other.

Stay strong !

Bet

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This was so wonderfully kind of you! Thank you so very much! :) Yes "Keep Your Eye On the Prize!".. I know that well! I learned that from a most cherished friend of NKF!! :) I would not be here with her and this incredible organization! You really made my day with your reply! I care for you as well and loving our comradery! What a great resource HealthUnlocked is! I wish you every bit of strength every bit of strength and well being continually! I appreciate you having us in your thoughts! You are now always in mine as well! :)

EY

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Hi EY,

No thanks ever needed! That's what friends are for! You will win and we will celebrate the prize together!!

Please contact me again, as it is my pleasure!

Bet :)

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I definitely will! :)

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Smokey,

Your battle is intense. But you are a warrior. Your strength is amazing and you a hero for us who follow your battle. Please let your doctors know how you are feeling especially with the thoughts of suicide. Lack of sleep and the medications can make you feel like all hope is lost. But it isn't. Melatonin is pretty safe and since the doctor already said to try it, try it. It helps a lot of people get a natural sleep.

Keep posting and let us know what is going on.

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Hi Smokey2014, you are dealing with a lot right now. Keep on going!!! It will get better. I got sick in July and thought I was never going to feel better again. Now in September, I do. We all have different challenges to face but you can do it! YOU ARE NOT ALONE! We’re all here cheering you on. As for me, I will be praying for you. God can do anything😀😀😀😀

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I hope it is a help to know that you are not alone. While I haven't entered this stage, I watched my father go through it with ESRD, a transplant, cancer, and now back on dialysis. All I can say as someone watching this (certainly knowing that I carry the same disease with this potential) is that he is the picture of grit and strength to me! Somehow, he keeps on. And I know you can. Trial sucks, but it makes us into people that can withstand trials! And these things are a testament to others. I know that one day, another person will feel exactly what you are feeling in this moment and YOU will be the shining light they so desperately need. Keep on. We are here for you!

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Everyday find a small joy. Something, anything that brings you to a happiness point. I pray you have a great family system of support. I don’t have that. Everyday i

Fight a battle. Everyday the Lord goes before me and sweeps up after me. Every morning I wake up expecting better. Most of the time I don’t get it, but I wake up. Go on. You can make it. If you get to the point where you’re on desperate ground. Call me. 985-722-6384

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Agreed. I call it my "peach rose". Every day I look for at least one wonderful thing that happened..one smile or someone that said something nice to me...

Hold that thought.

Xx

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Smokey2014,

I am currently going through he same treatment process. Been on Chemo (pill form) for about 7 weeks and just increased the dosage yesterday. Side effects like not sleeping, muscle weakness, fatigue, nausea, and more have all required some getting used to. Really you just deal. I have found that for me eating small regular meals of healthy low sodium items have helped. Especially, with the nausea. I have also adjusted my diet as needed over the 7 weeks. Eating more fruits & grains for healthy carbs to aid in energy. I eat high protein from lean sources (seafood is a good one, I love to snack on shrimp) as my body needs the protein levels and it has shown to be working in my blood panels. I also workout 3 times a week (if I am able). The combination of diet and activity has a made a huge difference in my blood work. The Nephrologist said whatever you are doing keep it up as the numbers don't lie and you have improved when I would have thought the opposite was ahead for you. He has been extremely supportive and positive and I am glad I sought out a doctor whom I felt was a good fit for me.

Throughout the last 2 years of finding out what I had and finding the right doctors to treat me I have been surprised by 2 things more than anything.

1st...the mental struggle of it all. I am a 42 year old very strong willed and tough guy. I have 3 children, a wonderful wife, great career, and an overall great life. I thought a combination like this would make me mentally bulletproof. What else could you need to get you through. What I quickly realized is how real mental illness is. Anxiety, depression, and so on. Even though I am aware of the issue I can't just think it away. It comes on and is not something just easily pushed aside. My entire life I have always found the mental side of things easy. I make up my mind to do something and it just gets done. This has made the metal aspect of this disease very difficult. Seek out the help as you have done here. It is essential!

2nd...there are more people who care and support you then you would have ever thought. You'll find people whom understand and can offer the support you need. Like you have done here it is critical that you seek that out. There will be very unexpected places where people will appear and shock you with their genuine and heartfelt support. It has amazed me and truly increased my faith in the world as a whole. Funny how you can turn a blind eye so easily sometimes and how quickly your eyes can be opened.

As I I have struggled to move forward I have found a couple of things that I use almost daily to bring me comfort and help with my mental state.

I repeat the following quote often "Don't worry about what could go wrong, be excited about what might go right." This has helped me deal with the fact that I won't feel better and know how well the treatment has worked for many months.

I also keep this saying that I wrote for myself to remind me of what this whole thing means to me. It isn't just about health. There is much more to it.

Battle

Be it disease, war, or otherwise. It will test your heart, soul, body & strength of character. It will define you in how you endure it. It will show you who you are, what you can do, will do, & are capable of. It will give rise to the greatness within.

No matter what the outcome, the battle with this disease will change me. I will make sure it changes me in a positive way.

Work hard to be happy and mentally healthy. It has a very real impact on the physical. Use the support that is here and everywhere to it's fullest and good luck. We're all in it together.

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Dunsouth..

So heartfelt and amazingly executed! You are exactly right.

Saw my mom through two years of chemotherapy...it is not easy..so I understand.

No fancy words, but behind you all of the way!

Sincerely,

Bet

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Smokey,

Never easy..pace yourself, go one day at a time- it is a process.

You are loved and supported here. Reach out!

Bet Xx

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Hi Smokey,

Thinking of you, hand on your shoulder and sending you all of my warmest and positive thoughts.

Go one day at a time, one issue at a time. None of the treatment is ever easy..but you will eventually feel better. I promise.

Find foods which calm your stomach and allow friends and family to give you a hug and get you through..

If you need to cry, do so, as all of your feelings are absolutely normal.

It is all a process...

Did your doctor put you on Cyclosporine, Cell Cept or Tacrolimus ( Prograf), or Cyclophosphomide ?

A dear friend was on Cyclosporine and experienced similar to you..it will pass.

Have faith, stay strong and reach out..I will always reach back.

Bet Xx

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Thank you so much for caring..

Yes, my nephrologist put me on Cyclophosimide and Prednisone. I take Prednisone for 3 days I.V, 1000mg then 50mg by mouth for the rest of the month. The following month I take 50mg of Cyclophosimide twice a day for a month. I alternative every other month between Prednisone and Cyclophosimide for the next 6 months.

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My close friend was on Cyclophosimide, once her body acclimated to it, she felt so much better and guess what? Out of the 3 drugs they tried with her; IT WORKED!

So there is hope!

Ask your doctor about lightening the prednisone and see if that helps..Eat well and sensibly, drink water and look for the sun to come out..it is peeking through the clouds as is your rainbow.

Sending hugs and healing..

B..

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Hi Smokey,

It is perfectly normal to feel as you do and see the dark clouds.

Feel my hand reaching out to you and giving you a hug. Just to endure that therapy displays the courage to fight which is deep within you.

Prednisone is a very tough drug; the dose that your nephrologist had you on in IV form plus orally is enough to frustrate anyone as the side effects are tough..the insomnia is just one.

If you are coughing up blood and blood clots, please call your nephrologist and make him aware or get to your closest emergency room to get that and the pneumonia attended to.

I agree with EY that no one is ever prepared for any illness to strike, nor is it fair or just.

" The Power to Win" is within..reach into yourself slowly and grab at it, one step at a time.

This is all a process, I wish that you could snap your fingers and have it begone with but unfortunately, it takes time for your body to adjust to the medications and for them to work. Again, it is a process.

I thank God that you got the right diagnosis and this was addressed as rapidly as it was as you are in the direction toward better health rather than frustratingly floundering or backward sliding. We go forward in our lives, not backward!

You will feel better..and find that some medications work faster and are easier on your system than others.

Importantly, communicate with your doctors and let them know exactly how you feel so that dosages and medication selections can be adjusted.

It is very hard right now, but try to find one wonderful thing in each day; be it the sun out, the love of a pet, family member, flowers or a word from one of us and let that guide you. Say a prayer..it helps and works. As Ellen, I and EY said.."Keep your eye on the prize!" ....

EY verbalizes everything so beautifully, elegantly and with such heart felt genuineness...listen..

Reach out to any of us.. You will get through this..you are NOT alone!

Xx Bet

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Hi there Smokey! I so hope you are hanging in there! You will make it! I am just checking in. No need to reply. I know what you must be enduring. Typing can very taxing and tiring right now. Just know that I am still here and will be checking in on you throughout. It's really good simply to read. And all you need to know is that i know that. Unconditional here. I am with you on the path. Pace. Pace. Pace.! :)

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Hi Smokey2014! I am justing checking in to see how you are doing. No need to type back if you are not up to it. Just know you are not forgotten am thought of. Keep hanging in there! Hugs!

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