Super scared

Schpanky, do tell us more about yourself, i.e. your actual diagnosis, age, blood test results etc and, although we won't be able to tell you that you will "live forever", I'm sure that we will be able to reassure you from our own experiences. It's good to talk, as they say!

Hello, Schpanky. It's good to have you aboard and thank you for your post. My kidney function is at a very low level and I know it is going to be the cause, one way or another, of my death. I'm not surprised you cry -- your post brought tears to my eyes too -- but there is no point in trying to runm away from mortality.

You say you have the best life you could ask for, so refoice in that life while you have it and don't spend all your time in fearing what will come to us all. I would love to tell you that everything will be okay but I can't. No one can.

Live each day as it comes and try not to let fear become your boss. I almost did that when I was first diagnosed but I moved it, as far as I could, from centre-stage. You owe it to yourself and those who love you to make the best of what you have -- and that sounds pretty good to me.

Everyone here is so friendly and eager to help; ask and listen, and God bless you and give you courage.

Hi,

Its not all about focusing on the figures as you have pointed out its how you feel.  My doctors and nurses all agree that they have read about it but don't know how it feels.  So reading about stuff doesn't always qualify you to be right.  It is a scary time for you right now, the fear of the unknown.  Mrs O says I have been there and got the t shirt . It is scary even if you are expecting it, when you hear the words you are ready for dialysis even though you have known it was coming your whole life is still scary, then it gets you thinking about transplant and all the fears that brings.  Worry not about these things and deal with them one at a time as they happen.  What I can tell you is that I have been through complete kidney failure, I have done my stint on dialysis and also recently had a transplant.  I am lucky to have the most amazing husband and children and the most fantastic family and friends and they are worth their weight in gold.  I am still here, I got through it and I have to tell you its not as bad as you think its going to be, you get used to it and it becomes part of normal life.  Oh and you will feel sooooo much better.  I don't know about liver for ever, but you will get through this.  Keep talking to us, there are some very lovely people on here who have been through it or are going through it and as we are all at different stages so can help put your mind at rest.  Another tip do not believe all you read on the internet, its not always right and can cause more harm than good, so listen to your doctors as they will keep you safe.  Mine have said to me we won't let you die there is too much paperwork lol this made me smile.  

So sorry to sense the pain and fear in your post. I think most of would agree that we have experienced all of those feelings, and still do, depending on what kind of day we are having. When I was very anxious my wise physician encouraged me to "not lose today worrying about tomorrow". Of course that is so much easier said than done. But I do try to enjoy something about each day and let tomorrow take care of itself. Be kind to yourself and your body and use the people who care about you as a support sustem. Stay in touch with us. We truly understand.

Take Care.

Sorry, I am responding a little late to your message.

Lately, some individuals do not want to live long on this forum, but that is up to them. It is their life and they must get their legal wills in proper order before they pass on to the next world.

Many are surprised that their kidneys are failing and they don't know what to do.. But I am one of those individuals who knew my kidneys would eventually fail.

Back in 1985, when I was 34 years old, my kidneys were failing. At the time, a kidney doctor told me he had seen patients like me on their death bed. My creatinine went from .5 to 1 7 within a week. However he said he never had a patient whose creatinine increased this much in a week but my albumin was normal. He didn't know how to treat me. I was never given any medications expect high blood pressure medication. I had a kidney biopsy in 1982. It showed I had the kidney disorder as minimal change. In 1985, he determined that I had also focal segmental glomerosclerosis. Only recently I discovered that they are genetic kidney disorders. He told me at that time, I would eventually have to be on haemodialysis ( a UK term) or hemodialysis (a US term). My kidneys stared to get somewhat bad in 2011. I starting gaining weight, my blood pressure could not be controlled and I beginning seeing a new kidney doctor.

Guess what he told me --I don't know how to treat you. According to my health record, I have over 20 different medical problems. He began by increasing my blood pressure meds. They didnt help. He tried 3 other drugs that were to slow the progression of my kidney disease, they didn't help. Was I worried. NO. I remembered that doctor in 1985, you will be on dialysis.

I am very happy to be on dialysis. Why?

Because I was not gaining fat weight. It was water weight. I started dialysis on Feb 22, 2014. My creatinine was 5.7. By July 2014, I lost 88 pounds of water or 40 liters of water. In 2013, I didn't realize I was dying. During 2014, while on dialysis, I was diagnosed with a high pulse rate at 160. The dialysis center immediately called an ambulance and I was rushed to the hospital. At the hospital my pulse was 166. The end result wold have been a stroke, but luckily that didn't happen. Also in 2014, I had to have my leg amputated due to diabetes and gangrene.

So you see, I want to live as long as possible. I could have refused dialysis, I could have refused the medication to stop a stroke, Or I could have told the doctor to leave my infected leg on.

I don't care if doctors don't know how to treat me through their medical degrees.

I don't care I have 20 or more medical disorders.

Today, I am healthy and alive.

Everyone has a choice to live or die.

Don't give up hope.

Try anything if you want to live . There are drugs that can help. PD dialysis is a home treatment. I go to a dialysis center because my blood pressure is checked 3 times a week and blood test every 2 weeks. I go there because I have over 20 medical problems. If one of them shows up, they will know if they can treat me or send me to a hospital

I hope you take the necessary steps to stay alive.

Good luck in your quest.