Hey guys bit of a long post here but just thought I’d share a bit of my story. Hope this is okay and if not then admin please remove it 🙂
This time last year I was in a really bad way with my health and since then things have only gotten worse. Not only my physical health but also my mental health. Having a chronic kidney condition like Polycystic kidney disorder that has also resulted in me having stage 4c Renal failure which is basically killing you from the inside isn’t something I’d wish on anyone to be quite honest, not even the person who hurt me most in my life. I’m on better medication for my pain now after seeing three different Nephrologist’s. But no matter what I do I still can’t get to be fully pain free and completely comfortable. I can’t even sleep good anymore because too long in one position causes pressure on my back and sides and because my kidneys are so big and crushing my lungs If I lay on my back to long then I start to struggle for breath. I have genuinely reached the point in life that because this illness has taken hold and control of every aspect of my life that I couldn’t care less if I live or die anymore.l I honestly can’t bare the thought of living my life like this and couldn’t stand to take much more of this life and nobody actually seems to understand that outside of these kidney support groups and forums. The people close to me do understand a lot but nobody can understand until they’ve lived one day in my body and experiences the illness myself and many others in these forums and groups suffer from. Once someone has suffered what we do that is when and only then that they can pass and sort of comment and judgement on mine and other situations we all similarly suffer from. The people close to me have given me the most amazing support over the past few years as my illness was slowly progressing and then over the last year it has quite quickly progressed to almost complete and total renal failure which is now also effecting my liver because the cysts are growing on my liver now and my kidneys are so big they’re crushing all my other internal organs and putting pressure on my spine. One other thing is that I find the support in these groups and forums outstanding. I only recently joined them this year and all the love and support everyone gives to eachother is outstanding. All day every day I’m constantly in pain and constantly feeling sick. I know there is people suffering worse than me elsewhere in the world and as horrible as this sounds the most important thing to me is me and my health. There’s not much more of this suffering I can take and my GP refuses to help me with my depression and says it’s normal to feel the way I do and trying to get those said appointments is like trying to milk a dinosaur, completely impossible lol. Sadly though due to cuts in funding and the price per patient the NHS pays GP Practices, this is the world we live in where you can only see your GP for ten minutes and can only deal with one problem anything else and you need to make another appointment. So if you have three health complaints or questions then you have to make three separate appointments. The NHS is crippled and despite that every single day the hospital staff do a brilliant job day in day out. They make the best of a bad situation, without the NHS I wouldn’t be alive because I’ll dare to say that I’d be dead without the NHS because there’s no way on this earth I’d ever be able to afford to pay for all the health care I’ve had in my life so far and the amount of medications I’ve had and the treatments and medications I’m going to need in future. Everyone single one of us kidney patients are part of a world wide family that join together through social media and the internet and in many places face to face through local meet ups and support groups. Thank you all for taking the time to read this, I know it’s a long post but I felt like getting my feelings out rather than bottling them up to myself. Thanks once again everyone much love to you all 💙💙
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terrysinclair311294
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You have my warmest thoughts and healing prayers as you go through this trying journey.
I can well imagine how difficult this must be, but remember that you are blessed with each day of living and a wonderful family who will see you through these tougher times. Those are special gifts to hold on to when times are tough.
Know that you are doing the best. that you can to advocate for yourself. It sounds like your present nephrologist is better equipped to treat your condition and hopefully you will find an equally good hepatalogist who can treat the liver cysts. Speak to them and see if they can do anything for the depression. I realize that it is not simple. One day at a time.
People do care. .put your faith and energies in them and God.
Sorry you are feeling like this. I have stage 5 CKD so can relate to many of those feelings and experiences. I was diagnosed out of the blue four years ago and it has completely taken over my life and never out of my mind. I don’t have any pain, but I am constantly tired and feeling sick. I am on sick leave from my job as I feel so rough and cant focus on work. You are right when you say that nobody outside of these forums knows what it like to have kidney disease. I always get comments like “Well you look alright to me”. I cant offer much in the way of help other than to say that the good people on this forum are always here to listen.
Hi, I can empathize, I have stage 5 PKD, to put it bluntly it sucks, seems in between work all I do is go to Dr. appointments as I have other health issues, right now my heart is acting up again. I spent a good portion of my life trying to find my way back from serious Bipolar Disorder/Panic/Anxiety and just when I thought I was getting where I had worked so hard to be, this !....All that having been said, I live one day at a time. It really is the only way to live. I also agree it is horrible that people tell you how good you look and have no idea what is going on. My family even pretends it is not happening yet again to another family member. Thank you for sharing your thoughts. I am thinking of you and sending prayers your way.
I am not is same boat as you so I cannot completely feel what you are. I do have one suggestion. You like to write. Write a blog about your journey. There are many free sites for blogging with all kinds of easy to use formats. By using your words, you can bring education and help to others who suffer with chronic illness, not just kidney disease. It will help you to release you worried and energy. I have found writing to be therapeutic. It is free and it is a great way also to make new friends.
Good luck and I am sending healing energy your way.
I can relate to your issues. I was diagnosed with PKD back in 1980. That was 38 years ago. Between kidney infections, kidney stones, lithotripsy, hospital stays and procedures for the same things along with ruptured cysts yes its been a wild ride. But, I've been on dialysis for over 16 years which is 3 times the expected life outcome for someone on dialysis. I attribute much of that to my drive in asking questions, finding answers and doing well at self-management of my healthcare. Twelve (12) years ago I had both of my diseased kidneys removed. No more pain from them. However I have many other health issues including spinal compression fractures along with scoliosis due to bone loss that more than makeup for the PKD pain. Life is a journey, not necessarily a destination. Most people who have chronic illness suffer from depression and take medication or are involved in counseling, often both. You may consider both and see if this helps. I am happy you are involved in support groups. Your life is not over, I promise. It will merely be a turn in the road as you go forward. It will be different, not over. Embrace the difference. Use it to help others and yourself. Send me a private message if you'd like to chat. Many Blessings
I have not had the pain u feel but I have some pain and other health issues and bad depression for over 25 years on and off. U r right, no-one can tell u how to feel or how to handle things unless they have walked in your shoes and the only one I know who has done that is Jesus himself. If not for him I’d be dead. I don’t understand why people suffer yet I know He suffered. Many times I have sobbed and sobbed asking God why, why, where were u when I needed u most. The pain is too much! “He said, the same place I was when my son was in that same pain”. “I am with u always and forever”. If we let him. Read Psalms 40 and I will be praying for u. God bless u in your journey to find peace,joy, and no more pain. That is my prayer for u❤️🙏🏻🌈
Also, an antidepressant may make u feel better. I was on two and clonipin which is the drug I hate and am weining off of now. It is hard to stop (for me anyway). Lexapro works for me or helps nothing will keep u from some thoughts but surrounding yourself with this forum of wonderful people, God’s word, and positive quotes (FB helps me because all I read and post r positive thoughts and I receive positivity). I flood myself in those words and His each day hope u can find a way to do that too. Prayers going up for u
My thoughts and prayers are with you. I was diagnosed with stage 3 Aug 2017 and totally understand how this takes over your life. It's so scary and also frustrating when people can't see that you're genuinely sick. Please stay strong . It's important to continue to advocate for yourself and please let us know how you are doing. I wish you the best . God bless !
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Living a Healthy, Happy Life with CKD
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