Good News or not!

[Love101cats]

At last I've had results of ultrasound. I have to phone g.p. in the week to discuss implications. But the wording is a bit difficult to follow. For example; a good mild thinning of the renal cortex = good or bad news? No hydronephrosis , lesions or large stones = good news surely? Reassuring and fitting with chronic renal disease= good or bad? And is chronic renal disease the same as chronic kidney disease? I'm just trying to work out whether to shout for joy, no comment or go around with a tragic expression.

[Bassetmommer NKF Ambassador]

HI Love,

Yes, Chronic Renal and Chronic Kindey are the same thing. No stones and lesions are a good thing. Walking around with a tragic expression is never necessary. Did your labs indicate what stage you are?

[Love100cats in reply to Bassetmommer]

Stage 4. My bloods are between 25 ad 29. My main symptoms are dry, flaky yellowish skin in patches, lower back pain, oedema more right foot, itching, nausea, exhaustion. I think that's enough. Well I'm no worse off than I was before because before ultrasound they were saying kidney disease.

[Hidden in reply to Love100cats]

When I was diagnosed in June of 2017 my GFR was 32. My last reading was 58. My average since that time has been 53. You can walk around with a "tragic expression" or you can take charge of your health by making positive decisions. Begin a kidney-friendly meal plan. Bring your labs to a renal dietitian and help develop a kidney-friendly meal plan and stick with it. Drink plenty of water, exercise as prescribed by your physicians, and make all of your appointments with your doctors. Being proactive is the best way to ensure you stay on top of the CKD. Learn all you can and be the one to make the decisions on your healthcare options.

Best of luck to you.

[debbie13410 in reply to Hidden]

It is good to know you can increase GFR. I was diagnosed Stage 3 on Wednesday. It came out of nowhere.

[Love100cats in reply to debbie13410]

I was stage 4 and must be stage 3 now at 30.5 it was a shock to me especially as no-one mentioned stages 1-3. All I can say is that I've really stuck to the renal plan and had no medication. Stage 3 is a safe place to be if you can keep it there.

[Bassetmommer NKF Ambassador in reply to Love100cats]

HI Love,

Those symptoms could have nothing to do with CKD. Itchy skin happens when your phosphorous is high. But then you added that your skin is yellow. Those two things might indicate an issue with your liver and same with the nausea. Have they tested your liver function? Also check to see if any supplements or medications that you are on which may cause the symptoms you have. I am below the GFR numbers you are and I do not have any symptoms at all. Are you on a renal diet and if you are not..... you should be. You can slow the progression down and I guarantee you will feel better. I have days that I am tired but for the most part, I feel fine. NO edema, no itchy skin and I have psoriasis....

[Love101cats in reply to Bassetmommer]

I have psoriasis too so its hard to work out whats what on my skin. I am on a renal diet given to me over the phone a few months ago by a renal nutritionist. Im finding it easy to follow and portion size is no problem as I'm not hungry. Ive no other appointments to do with kidneys but monitored by heart failure nurse and diabetic nurse at surgery. With the oedema I dont know from day to day if its heart or kidneys. I am feeling better than a month ago but the nurses have had to put me back on full dose of Spironolactone for the heart as I had to sleep in my chair due to breathlessness. I desperately need some professional input which is why I'm seeing my g.p. My nearest kidney specialist is 80 miles away. I need a little time and some help from you all to try to make some sense of it. To start with anyone with cardio/renal problems.

[Jayhawker in reply to Love100cats]

How is your phosphorous level?

Jayhawker

[Love100cats in reply to Jayhawker]

1.51 ?

[Jayhawker in reply to Love100cats]

Can you tell if it is either high or low on your labs? My labs tell me if the data is withing the normal range, above it or below it.

[Love100cats in reply to Jayhawker]

No, it only gives the numbers in a letter without comments.

[Hidden]

Looks promising, no kidney stones or no signs of cysts or cancer of the kidney, get blood tests done regular and check liver function, yellow skin is not normal.

[Bet117 NKF Ambassador]

Hi Love 101 cats,

Thinking of you. The members have given you some smashing thoughts and good direction here. Similar to what we have discussed.

Hopefully once you have a wag with your GP, you will feel so much better as she will explain your lab and ultra sound results and get you to a dietician and perhaps someone who can come to your home and prepare meals, clean and help keep you smiling at this time in your life.

I know that it is frustrating and frightening right now when labs and test results are not explained and you are feeling unwell.

I promise that it will all work out in time. You are on the right path.

Keep reaching out to us as we are all here for you.

Bet

[Love101cats in reply to Bet117]

Thank you for the ring of confidence! I've always been a very strong person and very positive. Ive also been caring for others most of my adult life particularly my husband who survived his first serious heart attack for 32 years but with lots of care. Now im on my own I need to make it about me! Not easy! But I've now got a book without print and need to start filling it chapter by chapter.

[Bet117 NKF Ambassador]

Honey, no thanks ever needed.That's what friends are for.

Making the care about ourselves and turning the page of change is not an easy one.

It's going one breath, one moment and one day at a time.

You are smart and strong and will get through this emerging with new found wisdom and strength to help others. You also have an angel watching over you to guide you.

I have a notebook that I bought when I suspected that this pandemic was going to send us into lockdown.

It is now pages of what I have seen, experienced and felt looking into my heart via " The View From My Window", which has become it's title.

The View from your window will be sunny and beautiful. It all takes time.

Do reach out at anytime and share, we are all happy to reach back.

Warm Thoughts,

Bet

Xx

[Love100cats in reply to Bet117]

I've made a scrapbook of my life to put things into perspective. Ive called it ' Just an ordinary girl.' It shows how someone from a deprived background can do something extraordinary with their life. And yes I do have an angel watching over me. Be in touch when have something to report.

[KidneyCoach NKF Ambassador in reply to Love100cats]

I wrote an essay 20 years or so back about those in kidney failure. Its entitled Ordinary people living Extraordinary lives.

That is a true description of how our lives progress.

Wishing you all the very best.

Amy

[Love100cats in reply to KidneyCoach]

💞🤝

[Allank]

Blood pressure concerns are shared both by your heart and kidney. Blood pressure medication is something you need to discuss with your GP. Your blood work should be as comprehensive as possible including the 24 hour urine sample. Good news that dieting is not a challenge for you

[Love100cats in reply to Allank]

Getting to speak to my g.p. is so difficult. I know she is working this week but is refusing any booking of appointments so I have to phone the receptionist to see if she can talk to me each morning., Next week she is probably not in. You know what makes me so sad? Decent patients who make no issues of the Pandemic are being turned into sad, apologetic, negative people by how they are treated. Some like me have been loyal to the Health Service for decades and look how we are treated. So nothing is comprehensive, nothing is joined up, no-one is communicating adequately. Yes it is chugging along but I can't see how it will survive. Wow! I dont know where that came from but it felt good. I'm tired of apologising for something that is not my fault.

[Hidden in reply to Love100cats]

After post transplant I have to visit the outpatient’s transplant clinic 1-2 times a week for blood work and to see the doctor. Everyone wears a mask inside and every patient who needs to see a doctor is seen by a doctor face to face, what’s surprising is that gp’s are still not seeing patients face to face, if the doctors at the transplant can see patients face to face I can’t see why gp’s can’t.

[Love100cats in reply to Hidden]

Good point!