Medication

[Roxy81]

Hi my gfr is 50 55 stage 3.what medication did you guys get given if any?I have bad fluid as a result but always seem to be on the back burner of things I'm not sure what to do next x

[Skeptix]

Hi Roxy and welcome. This is a very good site for people interested in taking some kind of leading role in the management of their CKD. The best thing you can do is to start reading around and getting familiar with the terrain.

Re: meds. CkD has many causes and many drivers. There is no med for it as such. Depending on your circumstances your doc will (ought) to prescribe meds to help. You say fluid? Well there are meds to help it but it would be strange for your doc to ignore this such that you're asking on here.

Are you seeing a nephrologist (I would have thought so at eGFR 50-55)? What did they say?

One word: you will frequently see people here speak of their experiences with doctors/nephrologists who take no or little action in response to their condition. We regularly see folk who only understand something is up when they hit eGFR 30-40!!!

CKD is serious and to recently unfolding degree, manageable unto slowing or halting its progression. If your doctor isn't taking this very seriously then you ought to start thinking of a new doctor.

The name of the game is slow.or halt thr disease. At eGFR 50-55 you have a good degree of function remaining and, given your age, you need to preserve it best you can.

[Roxy81 in reply to Skeptix]

Hi thanks for replying.i forgot to mention to it's not just 1 of my kidneys thats failing its both that are scared.i know about the diet I e also got calcium deposit on my kidney.ive only been seeing a nephrology for a few months and I don't think he's taking it serious I've gone from St 1 to St 3 in matter of months but just cause I've been settled the last few bloods he's just letting my gp see my now.im disappointed and not sure what to do next my oedema makes my body hurt and looks awful I get bad headaches and dizziness I'm at my wits end x

[Skeptix in reply to Roxy81]

As I mentioned in my post, uts not unusual for nephrologists to take a passive approach. The paradigm until recently has been to take a fairly relaxed approach in terms of attempting to slow or halt the disease.

But they at least ought to address symptoms. I had proteinuria (protein in urine) and so was prescribed an ACE inhibitor which helps that. Proteinuria accelerates CkD so reducing it with ACE helps slow the damage being done. You doc ought to at least address symptoms.

It may be that your on the public system and that this is the way they do it - let the GP manage things. Seeing as there can be a relaxed, passive approach, a GP could issue the few interventions.

P.S. Did you catch Covid by any chance? Your kidneys could take a hit from that.

My advice:

1. Get yourself a new nephrologist. If you have to go private then do so - it's only a visit or two a year at this stage and it won't be forever because..

2. You are going to have to become chief advocate and gather weapons n' ammo (information and knowledge about your disease). You need a nephr. who will take an aggressive approach to managing your disease.

3. Life is going to change. Rather, it has changed and you've got to catch up with that fact. It mightn't have been in your plans to raise your expertise on matters kidneys (and heart, a key factor in the disease longer term). But this will now become something central. It can be interesting so fear less and read more.

4. The more you know, the more control you'll have, the less scared you'll be. Ever see those skits where a pilot pretends to fall unconscious and the passengers are screaming in panic in the back? If they knew something about flying a plane they wouldn't be so scared. Its like that.

5. Buy a book by a guy called Lee Hull and read it. It contains loads of abstracts and conclusions from science papers on the subject. First reading through you should read the first few abstracts them pass over the rest - its a long book and the aim is overview, not learning lots of detail. Don't rush off on his diet just yet. The point is to get an appreciatipn of the subject and what kinds of things might be involved in a management programme. The book can be ordered on Kindle and you can get the jist of it on Amazon.com look inside feature.

It may be best to read it first as it will help inform you about choosing a new nephrologist.

6. There is a lot of different views about management.of the disease and not everyone's disease is the same. A few less contentious things:

- limit the amount of protein you eat. Tops is 0.8gr per kilograms body weight

- Red meat is a no no but lots will say meat and dairy are out altogether. Plant based is the way to go

- Cronometer is a free app that can help you track your intake

7. Get down to your doc and find out what they can do.

8. Post anything out of spec in your blood or urine. Folk can help inform you what these mean and help identify which questions to direct at your doc.

You're young. That's good in that you're less.likely to have loads of complicating co conditions. But it also means you have to make your kidneys last. The word in the literature is that this disease can be slowed or even halted. Not sure fire buy a goal to be aimed for.

Welcome again

[Roxy81 in reply to Skeptix]

Thank you it's really helpful.ive been fighting for years just to get a diagnosis as I knew something was wrong but again they don't listen.do you get dizziness from this disease?I have high calcium and creatinine in my urine.is tiredness normal?I suppose I just have to keep pushing them like I always have done.x

[Skeptix in reply to Roxy81]

Symptoms vary widely between individuals for reasons I don't know. I've none of what you have even though I'm eGFR 29.

Into the breech!

[Michael__S]

The first thing that comes to mind is to follow a renal diet. Lots of member on this forum improved their bloodwork and quality of life by following a plant based diet. There is no one size fits all there and it needs to be specifics to your health. For example I am not limiting my potassium intake like someone who has high potassium. It's a very important electrolyte.

Ask for a renal dietician, or if you can't a registered dietician can help you. I've used both and all the help they provided have been extremely helpful. And give it times. I found that my quality of life improved after a month or two and my bloodwork after 6 months. It's important to remember that there is no cure to CKD and all you can do is slow down or stop its progression. So slowing down is already a step in the right direction. Cheers.

[RoxanneKidney in reply to Michael__S]

Yep, diet is KEY. So is working out. Both can take the place of a lot of meds.

[Roxy81 in reply to RoxanneKidney]

Thank you x

[Roxy81 in reply to Michael__S]

Thank you x

[Sophiebun11]

Hi Roxy81, I was already on Lasix for 20 years when diagnosed with Stage 4 CKD. The neph and my PCP both said it was bad for the kidneys. My Neph switched me to Hydrochlorothiazide but it triggered migraines, so I'm back to Lasix but only every 3 or 4 days or whenever I can't fit into my shoes. It seems as though all the diuretics have toxic effects on the kidneys. Make sure to lower your salt use and check ingredients on pre-packaged foods for their sodium levels. Some foods are full of sodium like many canned goods or jarred goods and deli meats.

I'd check with a dietician. Ask your PCP or Nephrologist for a referral. Good luck.

[Roxy81 in reply to Sophiebun11]

Thank you x