My CKD journey

[Vidahope]

Back in 2009 I was very sick had scans & mri. As said it was a cyst on my left kidney something everyone can get that was in August by hen was called in December they had relooked at scans & mri I had a large cancer tumour on my left kidney. Op was arranged for January but I had a chest infection & op was not done until 12th April 2010. By then they told me it had spread to my colon I was 6hours in theatre but said they removed all The tumour had grown so was cut fro back to halfway round my front. I was in so much pain & in hospital for 3weeks. I couldn’t walk upright for almost 3months with 2sticks. GFR was 24. But here I am 11years on my one kidney’s GFR has got down to between 10 & 12 so I am in stage 5. About 4yrs ago they wanted to put a fistula in but I said no. It would not have been used in 4yrs!! I keep thinking positive & just about managing but I am now 84 so doing well especially when in 2010 they only gave me 3yrs that’s when I told them I would beat all their expectations thinking positive. I have also chronic Asthma.

[madonbrew]

Wow, that’s a really hopeful story! Thank you for sharing it! I’m sorry that you experienced this however it’s amazing that you have got to where you are! 😊 Yes, how they’d have wasted a fistula! 🙂🌺🌈

[Vidahope in reply to madonbrew]

Thank you

[userotc]

Very inspirational, thanks! My mum also had nephrectomy (4+ yrs ago) after large tumour and is doing well according to her serum kidney results albeit more to do with urine results. She's ckd 3a and aged 65 and focused on diet & wellbeing ie no drugs.

[Vidahope in reply to userotc]

I wish her all the best with love

[alport45]

What an inspiring story. I hope you continue to post with accounts of your daily life managing your health.

[Vidahope in reply to alport45]

Than you. It’s lovely to hear from others

[drmind]

You go, girl. I love your optimism. Positivity has been proven to be a successful treatment for various conditions. Best of continued luck. They just dont make people like you anymore. By the way, I'm 88 years old and my GFR vacillates between 3 and 4. I have a full life now full of fun along with worries, too. But, i.not giving up. My nephrologist isnt either. Hes the best. I'm so lucky to have found him. Hes never stops trying to keep my numbers in right ranges. Best and love...

[orangecity41 NKF Ambassador in reply to drmind]

Agree with you on being positive. I am 80 and diagnosed few years ago at 3b, and doing prescribed diet my CKD level hovers around 3.

[Vidahope in reply to drmind]

Ah thank you. You will be on dialysis. Keep you positive thought so pleased they are really looking after you good luck with hugs & love

[alport45 in reply to drmind]

Are you on dialysis? How do you feel with a GFR at 3 or 4? I started peritoneal dialysis at 7 and wondered how much farther I could have gone since I felt pretty good. I still have some function.

[drmind in reply to alport45]

No, I'm not on dialysis. Two years ago, I found out I had CKD when I was at gfr3 even though I obviously had it for several years without any GP telling me. I stayed at a high 3 level until a new nephrologist accidentally overdosed me on a new BP med and my GFR sent down to a low 3 level very close to level 4. Then, A few months ago, I suffered a very bad strep infection (first time in my life) and GFR went to high 4 level. But, I'm fortunate that most of my other lab numbers continually fall in normal range and that because my great new nephrologist got all my levels right by titrating my BP, vitamin D, and calcium meds slowly and carefully.

I'm trying to change my diet but it's been hard to get rid of favorites. Nonetheless, I definitely gave up some (excessive salt, red meat, processed foods) and eat lots more plant foods. It's a work in progress and I'm ok with the slow changes.

You ask how I feel. I feel very good almost all the days. If my chronic back problems were gone, I'd be back in the gym a few times a week. But, I've always enjoyed good health all my life and felt much younger than my stated age. I actually feel as if I'm in my sixties now and not eighties. My nephrologist also sees me that way, too. He keeps assuring me that I'm still not that close to dialysis. Anyhow, if and when it happens, I'll ne be ready to take it on.

Please remember that we are all different and all experience CKD differently. While there may be some similarities among us, there is rarely any perfect fit with others.

I think it helps all of us to try to accept our situation and do our best to do what we can to keep things stabilized through active efficient medical treatment, solid life changes, and a positive attitude.

Good luck with your situation. While no one "likes" dialysis, I view it as a lifesaver and am happy to know its available.