Hi, im new here, can't believe my luck to stumble on this site. Been feeling quite isolated for a while now. Im almost 60 birthday in June and am living with stage 4 occasionally dipping into 5 degenerative kidney disease. Was diagnosed about four years ago when a routine blood test result came back with an EGFR of 14 and instantly resulted in hospital with IV fluids and a drastic reduction or removal of most of my meds with particular concern regarding my anti inflammatories. 3 weeks later they could only restore my function to 22. Its never gotten any higher than that and constantly drops sometimes as low as 14.i had a urostomy performed about 20 years ago due to bladder disease and the slow degeneration of my kidney function may be as a result of that but no definitive cause has ever been found. Im not for various reasons a transplant candidate and at the moment for personal reasons have refused dialisis. Partly because i have a list as long as your arm of other medical issues. I have a had an exhaustive list of procedures and surgeries and have had enough really. Im joining as its an opportunity to share and give and get support.kind thoughts 19Willow62
Ive found support 😊: Hi, im new here, can't... - Kidney Disease
Ive found support 😊
Welcome.It's always nice to hear others stories. It's a really helpful site and everyone is always kind and supportive.
🙂
Dear Willow, so glad you found this site. I myself have only just found it and I've been delighted and encouraged by the responses I've had. Much as none of us would choose to be a member of this particular club, this is a lively, resilient and engaging bunch of people facing the same challenges you are, so take heart!
My gosh! That is some cross to carry for sure. The kidneys really are an amazing organ. I read that you should not do dialysis until 10 and under, so I think you made a good call.
Welcome, this is a good place to find support. I'm fairly new here too. Thanks for sharing your story. You have certainly been given more than your share of a heavy burden.
HI Willow,You are true warrior fighting through all your issues. Good for you for trying to stay off dialysis as long as you can. But like any treatment, you should be prepared and educate yourself on your options. It will get rid of the worry when you understand your options and make a choice. Then, if and when the time comes, it will not be such a crisis.
I too am stage 4. I was told over four years ago to prepare for dialysis. I changed up my diet and here I am still not on dialysis. First, I followed a renal diet and loss some weight. My GFR stayed at 13. Then I went plant-based, loss a few more pounds and have brought my GFR up to 18. I feel great. I work out now in a pool and the exercise I think is what brought it up more. It sure brought my other lab values into a more normal range.
Fighting for your health is a choice we all can make. It is hard and a lot of work. But personally, the choice is a better option for me then dialysis for now so I work hard at being the healthiest I can.
Best to you and I hope we can support you in your journey.
Thanks Bassetmommer for your reply. Unfortunately I have 2 other health issues that prevent me from taking your sage advice. I am bedridden due to severe arthritis in my knees, spine, hands and feet meaning I have carers every day to perform the most basic tasks. I also have chronic postoperative adhesions due to multiple surgeries that have left me with a severely restricted digestive system and very active and aggressive diverticulitis the combination of which has left me with a very restricted soft diet, ie no fruit, fibre or roughage. As mentioned in my introduction these are only a few of my complicated health problems. I won't bore you with the others or we'll be here all year. I'm reluctant, to say the least, to go on dialysis as it would only complicate matters further as my adhesion are so severe that home treatment is not an option and I have no wish to be hauled out of bed 3 to 4 times a weak for hospital care. Right now at this juncture I am living in my sister dining room, converted into a sick room. I am warm, fed, comfortable and loved and have a vew out of the window to vew the multiple bird feeders and their visitors. I consider this a quality of life and have less concern about quantity. I hope this makes sense. I'm not depressed or have a death wish at all but I can't see a way forward to prevent deteriation at the moment. God I hope I haven't depressed anyone. I'm actually in fairly good spirits and finding this little site has improved that. Kind thoughts. Willow
Warm, fed, comfortable and loved sounds like a good place to be. There is a case to fight tooth and nail. And there is a case for not fighting any longer. There is something tragic (to my mind) about someone putting themselves through the surgical/medical/psychological wringer in order to fight and impossible fight where there is no hope of a solution. I'd hope, come the time, that I manage to bow my head and accept what's coming to me.
I've seen both parents die: one embraced it and died peacefully, the other one headed over the precipice whilst still trying to face towards life, refusing to bow to the inevitable. And did not die peacefully.
Welcome and hope we add to the profit side of your balance sheet.
Skeptix well said very well said. I could not have worded that better. I have enormous admiration for all and everyone here and elsewhere for fighting the good fight for THEIR own health and well-being and would continue to encourage everyone to stay just as healthy as they possibly can but, and its a but, lol, when that fight becomes a losing battle then yo turn your efforts to fighting to live well while busy dying. The smallest of things become the most important and valuable. All else, money, possessions, family disagreements, all fall away to nought and little birds, a babies giggle, the sunshine glinting of a glass ornament, warmth love and laughter become the most valuable currency and all else fade away. The medical experts know their science but only we know our own bodies and our own limits.
Im sorry i should have added im terribly sorry you lost your parents and your message as to how each dealt with it was not lost on me. May you have peace through your journey. Willow.
Oh dear Willow, you have brought me no sorrow, but empathy for your illnesses. But you are a truly strong person to share your journey. You have pointed out exactly the most important thing in life. Make every moment count. Find the goodness in the small gifts we get, like family and the birds outside your window. Please continue to share with us as I hope you will find comfort in the fellowship.
I have done so already through your kind words, I have found no need for money or possession since my health took a nose dive and rejoice in the simplist of things. Daft as it sounds I love adult colouring books and my Audible library. We are situated in the countryside and I'm amazed and delighted at the variety of wildlife that visits. I'm a little worried now that my post may have given others a bleak prognosis. I hope they, you understand that it due to other complications that I may have a shorter life span and its no reflection on other cases.
You have a mighty spirit. I so admire your thankful heart.
PD at home may not work for you but home hemodialysis may be an option. I respect and honor whatever choice you make. Blessings
Due to the severity of my post op adhesion my nephrologist has rules out forming a fistula and my venal system is shot to pieces to such an extent that the only option open to me would be a carotid line which i have refused. My medical team are frustrated at the lack of options now available but i am more philosophical about the whole thing and am just busy getting on with the business of living while im dying. 🙄
Welcome and I wish you all the best in your journey.
Thank you and all good things and thoughts to you.
Willow, I'm sitting here in my bedroom/office looking out my own window at the birds moving around outside and the flowers beginning to bloom. My egfr is 7.6 and I should probably be on dialysis but have decided to kick it down the road until I "feel" I need it. I plan to do PD when that day comes, but have not decided what to do post PD, if anything. I too have no death wish, but I'm not going to prolong all of this just to please the medical community either. I alone will make that decision when the time comes on what my "next step" will be.
I have NO idea how I would deal with your situation. but if I at some point do find myself in a similar situation (I already have diverticulitis), I dang well hope I have your positive attitude. You rock!
So send me a private message sometime and just share your day with me if you want. I may not respond immediately, give me a day or so, but I'll get back to you.
I think having folks like you will find on this site is about as good as it get's for support and "therapy" outside of immediate family like your sister. My own brother died at age 59 from heart failure related to Polycystic Kidney disease. So at 69, I've been able to stretch 10 years past his experience. But taking from his experience. I plan to live each day as fully as I can since there's no guarantee there will be a next. Having folks to share these days with, on this site and in real life makes the experience so much richer. Sure it takes some effort on a given day to open up a topic and type the words, but what you get from it is good medicine. So keep posting!
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Dear RonZone thankyou for you kind message, i had no idea i rocked lol. So sorry about your brother i know the pain having lost my own brother last year. I heartily agree that you should not automatically follow the medical fraternity although they may be experts in their field only we know our own bodies and our own limits. Im very fortunate that while it brings great sadness to them my family accepts my situation and desicions. I have a feeble body but a strong will which i believe is the reason i have defied the doctors prognosis of last January 2021 that i had about 3 weeks left when my egfr took a huge nose dive. The same doctor told me much the same in April of that same year but im still trucking along. Your 'next step, is yours to take if and when. I dont find this a morbid subject just for some of us a reality but i dont want to frightened or depress others who are fighting the god fight. Im new here and not sure yet how to private message but when i do ill be glad to share mine and your day with you. Kindest thoughts. Willow.
Willow, if you click on my name, it takes you to my page where you will see a "message" link top right. That's where you send a private message. I just sent you one, so you should get an email with a link to it so you can click that link and reply. You can go to the very top of this page and see the link to "chat" There you can click and see all your private message chats with everybody.
And yes, it's not easy to talk about the reality of our coming death without worrying about upsetting those who are still in the process of either just finding out they have kidney disease, or just don't want to think about the whole death topic since they are giving 100% of their energy to staying alive.
But I do think there's room for the discussion of both on this forum. As there should be. Fighting to stay alive is obviously a focus for this group, but the reality that we might die from our illnesses also has a place for discussion. Don't see why we can't do both.
You seem to have found a GREAT balance between the two. Obviously you are still alive despite the medical community having given up on you a long time ago, so you definitely have the fight in you still and are a wonderful example to those who want to live despite the odds. But at the same time, you are ok to talk about the reality of death, which is very refreshing that you are willing to do that, and you are setting a great example to others on this site who definitely need to understand that subject very well, and prepare for it just like they prepare for dialysis or anything else they are dealing with. I'm doing a lot of stuff these last few months preparing for that event, whenever it happens. Now I'm not interested in rushing it, by any means, but preparing for it nonetheless. So sharing what you are doing in both areas of your journey will benefit others who are coming behind you at some point. No journey is the same, but each of us can definitely learn from someone else like you to enrich and benefit our own journey.
I do have empathy for you that you are in your current terrible situation, but I also admire you greatly for being true to yourself and making your own very difficult decisions.
So keep the reports coming on where you are and what's going on. And enjoy making new friends on this site as you share your experiences with everyone as you have the energy to do so.
Bless you and your thoughtful words. They have touched my heart.
All good wishes to you too.
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