Trouble adjusting.

[Pinktulips24]

After having a renal transplant 23 years ago my precious kidney has stopped working.

I now find my self back on dialysis. I thought medical science would have made progress in 23 years. It still breaks down to you and that ungodly machine. Don't get me wrong I am happy to have this lifesaving option. Have I not read articles about implantable mechanical kidneys? Science fiction maybe.

When I walked into my center that same old bleach smell returned and burned my nostrils. Most of the employees don't introduce themselves or offer any emotional support.

I have a permacath and a thigh graft that is "maturing". I am lonely, scared and overwhelmed. Between dialysis and doctors appointments I can't stop long enough to gather my thoughts.

I considered skipping the dialysis route and just receive palliative care. My parents are the best so they were a major factor in me dialyzing. I was also scared I might end up in hell.

I would like to know when do things get better? I find it hard to see the light at the end of the tunnel. My sense of humor is gone, I never smile anymore and I am mean to those people who love me the most. I no longer pray and would appreciate prayers from all of you that are so inclined.

Any comments, suggestions or funny stories would be appreciated. Thanks 🌻

[Bet117 NKF Ambassador]

I wish that I were able to make things easier for you on this part of your journey as I hear your frustration.

Speak to your doctors and put together a long range plan.

Remember, where there is light, there is hope. You are blessed with love and a wonderful family. Let them see you through this trying time.

Know that my thoughts and prayers go with you.

Bet 🙏

[Pinktulips24 in reply to Bet117]

Thanks for your advice. As you probably know i have too many M.D.'s. One for every body system. All are smart, kind and busy. It seems any free time I have is spent either on a machine or in a waiting room. At this point every minute is spent is on just survival mode. I am too sad, depressed and confused to talk about long term plans, if there is any real future to be had. Only thing I can see is a nursing home and death. Please pray for my parents and all those affected by this awful illness. Thank you again for reaching out. 🌻

[Bet117 NKF Ambassador in reply to Pinktulips24]

Hi Pinktulips,

I hear your pain and frustration. It is okay to feel as you do. Processes such as this are never simple or easy. The important thing is to look for the light and tulips in your life every day.

If you feel that your doctors are not listening to you and hearing you, then don't be afraid to find doctors who will. Having many specialists can be frustrating, but your true go to person should be your GP who should be getting reports from and working with the others.

You have a wonderful family and many who love you, let them support and see you through.

Stay strong and hold that thought.

Reach out and let me know how you are doing-I care!

🙏Bet.

[Ladybug_05]

Hello! I'm on dialysis myself and I'm waiting for a transplant (1st round). I assume you do hemodialysis? Are you able to do Perotineal dialysis (PD)? I'm actually writing this while on my cycler! I did hemodialysis myself for a few months when I was really sick, and I can see why it would be depressing.

As someone who doesn't know anything else (I haven't had a healthy kidney since I was about 7 years old...I'm 21 now), it does get better. You will adjust and can beat ESRD in the butt! It's hard, but there is a light- you just haven't found your flashlight yet! I say that, because my mom always tells me when I get down is "you can't find your way through the darkness without your own light. So get a flashlight and get going!" I personally think of Dory's "just keep swimming" mantra too! They help me a lot when I'm depressed and in a slump, since it reminds me that I am the only one who can make myself better (but having awesome family and friends helps too!).

Anyhow, maybe look into other treatment options for the long term? And on the family front- just be open and honest about how you feel. You're grieving and it's natural. Maybe find a new hobby or have a movie night with friends and loved ones to help you heal and move forward! I hope these help and good luck sending good vibes your way!

[Pinktulips24 in reply to Ladybug_05]

Thanks for your advice. My flashlight 🔦 Is very dim indeed. I am on hemo. Peritoneal dialysis is not an option for me due to bowel adhesions from intestinal surgeries. I try to keep my deepest thoughts from my parents. Everything I go through they experience it worse because of their love for me. I have been a burden to them since early childhood. We live very close to each other. However they do not seem to understand the severity of my health problems. I break down in tears very easily and this just rips their hearts out. They prefer to minimize dialysis (just watching tv for 3-4 hours). I prefer to isolate myself from everyone. Family, neighbors and friends have drifted away. I just want to be alone.

I am very irritable and I see my old personality passing away. I must admit I don't like myself and just find it hard to see any positive outcome. The future is very bleak. I do ask for any prayers you can offer because my faith is lacking. Thanks for your interest and advice. I am looking for some miracle batteries to give me renewed faith and hope. Thanks. 🌷

[jesselizzard]

Hi - I am so sorry to read that your transplanted kidney stopped working. I am praying for you to continue with dialysis and hoping you will receive another kidney very soon to give you back your life. Please don't give up on praying and keeping a positive spirit. I will keep you in my thoughts and prayers. 🙏🏻

[Frankie24]

I am on the waiting list for my 1st kidney and nearing dialysis gfr 10%, I have chose to do home hemodialysis when the time comes which will be sooner than later. Between work and dr. appointments I feel I have no life. This will allow me to have a more normal life. I appreciate how you feel, I feel like I can no longer smile and be carefree as I always was. I think my coworkers notice, but I don't want them to know how bad things are as I worry about my job. I live a day at a time, that is all I can do. I pray for you that you find the peace, courage and hope that you need at this time.

[Pinktulips24 in reply to Frankie24]

Home dialysis is not a option in my geographic area. My transplant was from my dad. It lasted 23 years. Not long enough! After I am stable on dialysis for one year I can begin the transplant process again. I am a nurse and had to go on disability due to my physical condition and demands of the job. I thought I would miss work but I soon found myself enjoying those "sleeping in" mornings. I am indeed seeking peace, courage and hope. i just want to go back in time to a carefree lifestyle where I can laugh and smile and my sense of humor returns with my renewed health. Thank you for you support. Thanks. 🌷

[3Kidneys]

I’m a failed renal transplant patient myself. Mine only lasted 9 years, mine failed due to drug allergies (which were unknown at time of transplant). But I feel ya on all the doctors etc. personally when I went back to dialysis I went with Peritoneal dialysis. I still work full time and do dialysis nightly while I sleep. Also, hemodialysis wiped me out, I was always exhausted and could do nothing but sleep after treatment. And the diet is less restrictive on PD versus HD.

[Pinktulips24 in reply to 3Kidneys]

The life of a transplanted kidney is never long enough. I was to the point that I took my good health for granted. Within 3 weeks it was all gone and I was back to zero. Less than zero ⬇️ really. Peritoneal dialysis is not an option and hemo just takes away any energy and only sleep turns my mind off.

Thank you for your words of support. Wishing you peace and health 🌷

[Kbressler NKF Peer Mentor NKF Ambassador]

In your opinion, what are the alternatives to dialysis? Challenging you to think about a second Transplant or is that out of the question for some reason? Do you feel as though you are going to be on dialysis for the rest of your life? I encourage you to explore a second transplant as soon as possible. I do not know your situation but if I lose my kidney that was transplanted 31 years ago I am definitely thinking second transplant unless there are circumstances that keep me from it. I will pray for you Pinktulips and remember there are many people who undergo multiple transplants. Are you one of them?

[Pinktulips24 in reply to Kbressler]

There are few options to traditional hemodialysis for me . Peritoneal, home or nocturnal dialysis are not a possibility. I am very greedy I guess. I want my full good health back or nothing. It is always an option to stop all treatments and just seek palliative care. My family would consider this a type of "suicide". I know that there would be no turning back. I am afraid of being a living corpse in a nursing home. Or worse to go to HELL. 👹

My only hope is another transplant. For this I have to be stable on dialysis for one year to go on the waiting list. An additional complicating factors are that I have some several antibodies due to multiple blood transfusions. My mind is so polluted by poisons, illness and depression that I find it hard to see a positive future. Day by day existence is the cycle I have fallen into. Thank you for your concern and kind words. 🌷

[3Kidneys]

No I won’t be seeking another transplant. First of all I lost my husband a year ago, he was my rock and my world. I’m just going through the motions of life right now. Secondly the medications are extremely expensive on private insurance (remember your Medicare only pays 3 years) and without my husband’s income to help out there is no way I can afford it once Medicare stops paying. And I make or have to many assets to qualify for any type assistance.

[Cathy12156dsrjad]

Hi Pinktulips24, I remember feeling the same way. Scared and alone. But one thing I found after many many years of loneliness although I was surrounded by people and sad and unhappy and nothing helped. That is until I truly started reading God’s truth. The Bible. Some days even now I can’t read it. But I read one or two verses if so. Depression runs in my family and I have had it for 25 plus years on and off. David in Psalms went thru depression. He called out to God and God answered. I don’t have any medical advice but I can sure tell u from MUCH experience who has literally saved my life at least 5 times (that’s literal). I’m sure many many many more. And I have seen too many miracles to count on two hands. Honestly. I can’t explain them away. So all that said, God loves u so much He gave HIS son to die for u and I can’t imagine that pain but I have found that love and Jesus is holding u in His arms when u can’t hold yourself up. He loves u so much. That’s not enough tho. We r told to seek him and we have to. For us to feel whole and at peace we have to stay in His word. A must for positivity and survival! I believe all things have a reason and today was for me to read this and tell u how much he loves u and he is waiting for u to just give it to him. Psalms 40. My favorite! I hope it helps. Don’t give in to Satan’s lies. Hold on, my friend, GOD’s GOT THIS! Prayers going up for u! CKD is a test but thru tests come all our TESTIMONIES!❤️🙏🏻🌈

[Bunkin]

Maybe you should switch to PD so you can do at home. Maybe that would help. Prayers for you. God can do anything

[Bunkin]

Hi!

I know the struggle to maintain happiness and a normal way of life. You just have to keep plowing ahead. It’s ok to have bouts of depression, I think that comes with kidney disease, but you can’t let it keep you down. Try to think positive thoughts. I noticed you said you no longer pray, well today is a good day to start! God is always there. I would have lost my mind and given up by now if I didn’t have God there beside me. Prayers for you. God can do anything 😀