Declining Kidney Function

[m1ke3]

Hello, I am new to this forum and Kidney Issues and would appreciate any feedback from long term kidney disease sufferers. I have Pulmonary Hypertension and Scleroderma and am on 80mg furosemide daily and 10mg Prednisolone for pulmonary oedema alongside treatments for PH. My eGFR has been in the high 40's - low 50's for a while now and serum urea been around 14 and Serum creatinine 100. But my last test showed my eGFR had reduced to 39, my Serum Urea is now 25 and Serum Creatinine is 122. Obviously this is worrying me and not sure what to expect. Am I on a slippery slope now or can these results stabilise and tick along for a long time. Has anyone got the same kind of results.

This is the first time I have had Kidney issues and they didn't start until I needed diuretics but if I lower the diuretics the fluid in my lungs and breathlessness gets much worse.

I am not on any treatments for Kidney disease, any input would be appreciated many thanks.

[orangecity41 NKF Ambassador]

Sorry to hear of your situation. Many of us have been prescribed appropriate CKD diets which have helped. Here is a link to information on CKD. Education on CKD is important. Davita also offers a class. Keep us posted.

kidney.org/atoz/content/gfr

[m1ke3 in reply to orangecity41]

Thank you so much for reply and links I will read it with great interest, anything that can help is greatly appreciated.

[userotc]

Its been speculated that higher doses of furosemide may harm kidneys and yours seems higher than the mean albeit a bit less than the higher doses reported renalandurologynews.com/hom...

[m1ke3 in reply to userotc]

Thank you for your reply, yes my kidney function was ok (ish) till the increase in furosemide for pulmonary oedema, and because I have scleroderma I am at risk of steroid renal crisis but the steroids help my breathing so much its a catch 22.

[userotc in reply to m1ke3]

Yes I understand your catch 22 situation. Personally Id consult with a related, qualified Nutritional Therapist. Most/all drugs can affect key organs, as we know.

[m1ke3 in reply to userotc]

Thank you

[LisaSnow in reply to m1ke3]

Follow your doctor's order. They understand the complexity of your two diseases and know what they are doing.

[m1ke3 in reply to LisaSnow]

Thank you

[lowraind]

National education, support and advocacy organizations:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

[m1ke3 in reply to lowraind]

That's great information thank you for that it is really helpful.

[lowraind in reply to m1ke3]

I went through my first days of knowing I had CKD in late 2017. This site and those listed helped greatly.

[Beachgirl32]

welcome to the forum yes it is hard when we have more then one problem do we take this medical that may cause this problem but it will clear up another problem. I didn’t start 80 mg of lasix until stage five of my kidney disease but I need it . I hope your doctor prescribe potassium on that much lasix cause that much lasix can delete your potassium

[m1ke3 in reply to Beachgirl32]

Thank you for your reply and good to know that I'm not the only one on high dose lasix. My potassium is usually between 3.5 and 4.2 the doc has not prescribed supplements. It is the devil and deep blue sea scenario take lasix and kidney struggles don't take it and fluid builds up in lungs and heart struggles. Hoping that kidneys don't deteriorate further for a while.

[Lynne0762]

Have you seen a pulmonologist for the lungs? I'd do that.

I too have declining kidney function. Did you ever have a colonoscopy and what did you use for prep? Magnesium...bad. Osmotics bad. What's left?

[m1ke3]

Hi Lynne Thanks for your reply I'm under a specialist hospital for my PH as it is a very rare and complicated condition, the hospital comprises of specialist respiratory and cardiology experts as PH is a pulmonary vascular disease. I haven't had a colonoscopy thankfully, i'm hoping that I won't need one.

[jeffersonsam99]

Sometimes kidney may be affects its function and health due to consuming tablets regularly or consuming high dosage of tablets. Seeking doctor advices will surely help to overcome this issue, because one of my neighborhood facing kidney related problems due to consuming high dosage tablets for long term.

[m1ke3 in reply to jeffersonsam99]

Thank you for your reply I suspect that is exactly what is causing my kidney decline. Will be talking with doc to see if anything can help. Thanks

[LisaSnow in reply to m1ke3]

The PH is a type of hypertension that is actually known to adversely affect kidney functions. I can not stress enough that given the seriousness of PH and scleroderma, please only follow the advice of your doctors.

[jeffersonsam99 in reply to m1ke3]

Alright m1ke3. I hope you will get good results in your body health in the future. God with you.

[m1ke3 in reply to jeffersonsam99]

Thank you I am keeping fingers crossed.

[Avenger]

My gift is 21, I changed to a Whole Foods diet, witch is grains,beans and greens.

I improved some. Because of diabetes. We weigh all my food ask google or Alexa

How many carbs are in 100 grams of (whatever you’re eating.) also do a search on good foods to eat for CKD. Mine all started from blood pressure, caused strokes, then CKD.

I wish I had your numbers.😊❤️. You’ll get there, keep reading, and learning,

Podcasts search for Kidney whatever you need to learn.

Avenger

[Avenger in reply to Avenger]

you can get recipes @ Davila.com, download books and watch videos, and on hear you’ll find recipes also.

[Blackknight1989]

Age? It is a conundrum and as a stage 4 sufferer since ‘96 I can only say find what works for you with the help of a MOST TRUSTED doctor.

[S_dillow]

did they check your heart at all?