Dr phoned last night wants me to take Daplaflozin ..couldnt quite catch what she said. I have never spoke or seen her before think she is new.
She said the consultant wants me to take them before I see him in January , she asked about seeing him last time I told her I have Never seen a Nephrologist before in my life which she brushed off.
I asked her if I could ask her a question she said it was now out of surgery hours ,
We are getting appalling care in the NHS.
I googled info on the tablets and despair as I tend to have an adverse reaction to some tablets ..she just said if you get light headed or feel faint come to see her.
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MrsP70
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The drug you are referring to is also known as Farixiga. It is a great drug. My husband is on it and it brought his CKD from almost stage 4 to almost stage 2. He also now has no protein in his blood, which is a great thing. He has no side effects and has been on it for almost two years. If the doctor is suggesting it, go for it. You can always stop it if you have issues but I think you might be amazed.
Yes, Because I have an extensive background now in renal diets...the poor man has to follow what I fed him. Less red meat, no to low salt, lots of veggies and some fruits. He also has lost weight. All helps.
Yes, it is a great drug which my husband is taking: he was prescribed it in hospital straight after his massive STEMI LAD heart attack where they discovered his CKD which he had no idea about. Dapagliflozin (or Forxiga) was also helping with toxicity of his other 14 heart medications at the time. Now some of his meds are reduced, some being stopped, and his eGFR came up to 52 (stage 3 a CKD) from 32 (almost stage 4 CKD). Of course, I am of course making sure he has a kidney diet with reduced protein, potassium and phosphorus intakes with good balance of carbs, leaching potatoes (a very important step to follow in order to NOT going down the road to a kidney transplant….!)
Leaching potatoes is a way to reduce its huge amount potassium toxic for people with CKD. Peel, cut, and either soak for 12 plus hours changing water, or/and boil in large amount of water for 10 min, then totally change water and boil again till ready. Google it.
Sadly dear GPs do not tell patients on stage 3 to keep proper kidney diets in order to stop/slow down disease progression till stage 4 CKD - when it could be almost too late for some, although miracles could happen (I am very grateful to Blackknight1989 for pointing it out to me and for telling his remarkable inspirational story!) Potassium is on of the factors, even if the labs are ok for it yet. Zero salt of course.
I also leach any poultry (for those eating meat the same) - simmer for about an hour for phosphorous reduction but keeping proteins (Japanese way)). Then dress it with lemon juice and extra virgin olive oil with a little bit of herbs. My husband refuses to eat tofu and is struggling with other plant proteins, so this process is a necessity.
There are many proper medical articles in PubMed online, as I found that a lot of information for general audiences is very conflicting and confusing, even the recipes from the Kidney Foundation…
Please research and keep improving your kidneys. Best of health to you all.
It's great that you're taking proactive steps to manage your kidney health! Leaching potatoes and poultry can really help reduce potassium and phosphorus levels, making them safer for people with CKD. Thanks for sharing your tips and encouraging others to take control of their kidney health.
Yes - that works! My husband is a diabetic who wound up on dialysis and now has a transplant. We leach potatoes all the time. It reduces carbs significantly. We also avoid anything made with flour, rice, etc. It's essentially the diabetes diet and we give it priority over all other diets. Looking back, I'm pretty darn sure the doctors told my husband about this but he ignored it, not really hearing it. I think T2D folks are a very hard population for doctors to work with since the disease is so silent and really doesn't "hurt" one for a decade or two. I suspect they believe medicines will keep them going too. As one caregiver to another, I really appreciate the work you're doing. Stay strong and focused. Simply be aware that kidneys can simply quit for T2Ds. My husband's kidneys stopped working one day even though his "numbers" on paper looked great. His nephrologist wasn't surprised, simply saying "kidneys sometimes simply quit that way" for that population. Damage done by diabetes is indeed permanent, not reversible. Every day, month, or year you can give yourselves w/o dialysis is truly a gift.
Darlenia, you are doing a great job for your husband!!! But what he eats instead of rice, flour etc? Snacks? Deserts?
I am asking because my husband was prescribed Dapagliflozin straight after MI - for kidney function (despite his prior to STEMI chocolate & cakes addiction, to my surprise he is not a diabetic) and its leaflet specifically says about a need to keep up carbohydrates in the diet. He has lost about 10 кг in 6 months, now is 85 kg for 183 cm height. I am worried about his muscle mass and bone density. He is really missing his deserts, chocolate, cheeses and oatcakes….beloved organic bananas and avocados …. I recently tried to talk to our GP about his diet - but GP told us that chocolate is fine (!) to eat (with almost stage 4) CKD…when in fact eating chocolate is harmful in this case…
This is why I am self educating and am very grateful for insights and experiences. Thank you!
You mention your spouse does nothave diabetes so highly recommend you seek guidance from your spouse's team for diet advice. (If they're not helpful, a licensed dietician can probably help you.) Our situations are different, so diet requirements will differ too. With diabetes, we're very mindful that glucose (sugar/carbs) coats and stiffens the vessels throughout the body creating heart issues, kidney issues, etc. Atherosclerosis is an issue. So we leach certain foods (potatoes), substitute almond flour for wheat flour, use cauliflower rice for regular rice, etc. - all to lower sugars and carbs. For example, if a dish requires noodles, we substitute zucchini. For sandwiches, low carb breads are available at grocery stores. For snacks, we turn to popcorn, low carb crackers, etc. For desserts, there are many low carb recipes online. We are also label readers. This type of diet (largely keto) can cause significant weight loss and more - it requires medical oversight. Truly, sugars and carbs are needed in normal amounts for most people. So, please don't go adopt this diet unless your doctor approves doing so. Appreciate all the work you're putting into this to keep your spouse healthy! You're a trooper.
No offense meant to you by this comment (always not a good thing if you have to caveat your post with the first sentence) but I have to say it because if someone else reads your comments with low knowledge of CID or subsequent to initial diagnosis, it could induce panic in a newly diagnosed person. Specifically in your post above you “said:”
“keep proper kidney diets in order to stop/slow down disease progression till stage 4 CKD - when it is too late”
Stage 4 CKD is not too late…I had my initial diagnosis in January 1996, the ER doc who was my treating physician decided to treat my ascetics (large belly due to renal insufficiency and the inability of the kidneys to rid the body of fluid) with a peritoneal tap (a catheter inserted subcutaneously into the abdominal cavity to drain the fluid slowly). This is done frequently but not to the excess this idiot doctor choose as he drained nearly 60 lbs. of fluid in 5 days (since I had time laying in the ICU for almost 7 months, I later found in my research that recommend amount of fluid to be removed is between 500-700 cc or about 1/4 cup…not nearly the body weight of a 8 year old! To further quote the Merck Manual for physicians: care should be taken by non-physician personnel to ensure no more than 1000cc ascetic fluid should be drained as this often results in metabolic acidosis (Too much acid in the body resulting in confusion, cardiac disturbances and in severe cases death) in patients with ph < 6.5 {my ph in ER 3.1} results in cardiogenic shock and death…(btw this syndrome is why it’s always important, especially in stage 3B-4 and even ESRD while on dialysis, to maintain proper hydration)
But I digress, my point I was diagnosed stage 4 CKD in January 1996, ER doc insisted a abdominal tap to drain fluid and instead of the proper amount drained nearly 60lbs…this resulted in metabolic acidosis and multi-organ failure leading to an EKG flatline and an emergency situation as well as a near 7 month stay in the ICU plus an additional 5/6 months recovery post 6/7 month hospital stay…the CKD diagnosis came first and I was the
DREADED stage 4 you reference as too late…(as an indication of the severity of my emergency my creatinine was > 19 and BUN > 185 (normal values creatinine <1, BUN < 20…there was no eGFR measurement to access kidney function used in Baptist Hospital in Little Rock, AR in February 1996….i had my first eGFR measurement in 2005 and it was 20 + or - 3-4 points…my live or die numbers were creatinine and BUN (blood-uric nitrogen). So I’ve been in stage 4 CKD 28.5 years, I was 28 and 345 days old when first diagnosed and I’m now 58…I’ve lived with a eGFR about 20 for 28 years and 275ish days almost longer then I had with normal kidney function…I did recover with the afore mentioned CKD as the only complication as my liver did completely regenerate post organ failure and I opened and ran my own financial advisor business, I got married, I have a 22 year-old daughter and a 27year old son, (or more correctly my wife had my two wonderful kids, I’ve traveled all over the world as a result of the success I was blessed with in my business and more importantly I helped nearly 500 clients reach financial goals they never thought they could (not my ability but my desire to truly make a difference in another’s life to “give back” what I believe is only a blessing from the Great Protector for the additional nearly 29 years he’s granted me when by all medical evidence (and my gastrointestinal doc reminded me of daily) indicated I should have died on February 16,1996…it’s ok if you don’t believe as I do cause I won’t hit you over the head with it and I’ll not reference my beliefs again in the post…
Ok as promised my point:
iCat stated above: Sadly dear GPs do not tell patients on stage 3 to keep proper kidney diets in order to stop/slow down disease progression till stage 4 CKD - when it is too late
STAGE 4 CKD is not a death sentence nor is it “too late” especially currently when SGLT2s cause stop CKD progression in its tracks (EMPA-kidney study 2022 and several more since validate the amazing potential of SGLT2’s in both diabetic and non-diabetic CKD patients, at a 10mg dose of Jardiance it’s “safe to use down to an eGFR level of 20”
many new CKD patients are diagnosed stage 3 and are already scared, worried that the future is not what they’ve dreamed of, but to say stage 4 is too late will cause confusion and potential anxiety issues unneeded….i believe 3/4thsof the battle is your daily outlook and attitude and if always worrying about life or death your outlook on your future ceases to be positive…sorry for the length and I’ll close with again, I’m not picking on you or trying to embarrass you, promote my knowledge or abilities or assert I’m a doctor, but I have lived with this almost 29 years and I do have some experience with a stage 4 CKD….thanks for indulging me!
Blackknight1989 thank you for your inspiration and guidance! Your story is an eye opener, thank you for sharing and I wish you many happy years of joyful life with your dear wife and grown up independent children!
P. S. I have edited my post, thank you for pointing me out!
Although I hope you agree that it doesn’t change the fact that a proper kidney friendly diet (and relevant guidance from the doctors) should be much earlier than than just waiting till stage 4 CKD approaches. And there is evidence that with a good nephro-friendly diet CKD could be almost completely slowed down for many people and even “frozen” at say stage 3A for many, many years. Wishing everyone a great health!
Thank you and I’ve been waiting for your reply, as there is no “tone or inflection” in written communication versus a verbal conversation. As such I’ve been concerned that you’d take my reply”personally.” I only wanted the best information out there for those seeking help with a “new & scary” diagnosis. I’m grateful for your kind words and great-attitude. I just finished reading a CKD/Proteinuria/CVD study on the JAMA Cardiology site and have noticed that the “heart researchers/medical studies guys are including “attitude and management of patients emotions/fears” in their studies citing other research from the psychiatry researchers that keeping the patients outlook positive or avoiding a negatively worded diagnosis explanation was also a risk factor for increases of all-cause mortality in CKD/CVD/Metabolic Disorders patients… as such your positive attitude, general “good-naturedness” (yes I just created a word!) will serve both your mental health and physical health well in the long-run! I try to do the same but fall-short often….CKD/300% higher risk for sudden cardiac death, big increases for “sudden AKI” etc can and will overwhelm your mental health/outlook on life in a heartbeat and if I think too hard or read the wrong medical study I run the risk of a week in bed! Again I appreciate your kind words and understanding and wish you the best in conquering your health challenges!
Yes and no. I am on him all the time. I make sure he drinks plenty of water, even though he add sugar free Kool-Aid to it. The only beef he eats is hamburgers. Lots of salads and veggies. I follow a strict diet so by default, he is too. Just not as restrictive.
lol, sounds like my hubby with his diabetes and sugar. I have upped the veggie and fruit intake and stopped eating red meat ( which I love) just eating a little chicken ( which I don’t love ) thanks Bassetmomma
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