I am still none the wiser, the 2nd appointment with the specialist didnt go very well, he didnt ask me any questions and simply said "well the last specialist you saw asked about your symptoms so you need a biopsy which could take up to 3 months to get"
When i said, but since then my kidneys have been hurting non stop he just said "Well i have no idea what that means"
So now I am looking at possibly going private.
II visited my GP and asked for my levels to see if anyone here might shed some light that they havent.
Serum Sodium - 142mmol/L (133 - 146)
Potassium 4.0mmol/L (3.5 - 5.3)
Creatinine 154 umol/L (58 - 110) *high*
GFR 45ml/min/1.73m2
will be filed as 45ml/min/1.73m*2
The only thing the specialist did tell me is my creatinine should be 111 for my height and age and the level it is means my kidneys are only working at 50%
Since this has all come up ive been looking up symptoms for CKD and i seem to have a lot of them but when i told the specialist he didnt seem interested.
I get swollen around the shins (excuse the horrible photo of my leg)
I itch a lot, i have a lot of very bad headaches, my mood is all over the place, i am always and i mean always tired, i can need to pee a good 3 times a night.
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zide
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Again, I am so sorry that you are suffering physically and at the hands of these physicians.
I agree with everyone who has responded- please get a second opinion.
If a doctor is not listening to you, dismissive of your needs and symptoms, then it is time to move on.
I know as I worked with 2 nephrologists who I am sure are competent diagnosticians but did not follow up with care plans and were dismissive. It is disheartening.
You have the right to seek the opinion of another physician...your GP doesn't have the right to tell you to stay with one nephrologist.
Perhaps a new GP and nephrologist are in order as this is your health, not theirs.
My biopsy was scheduled within 3 days of discussion with my then nephrologist.
It was performed 2.5 weeks later as I was restricted to one day a week for scheduling due to transportation issues.
My brother is on public health insurance in the US and has 2 serious health issues. He has had no issue changing physicians..especially after his long time GP retired last year.
See who is in the network and takes your insurance.
Make copies of your labs and an appointment.
Please let us know how you are doing. We care and are here for you!
I'm so sorry about your predicament; having specialists not listen is a beast we all know way too well. I would look into getting a new doctor that will take your symptoms seriously, since you are showing many signs of CKD, with the edema, multiple needs to urinate nightly and other symptoms. The itching can be anything from your soap and/or detergent, to dehydration. Your phosphorus could also be high, which can make you itchy and is a sign of CKD. I'm currently in kidney failure and I itch regularly, just because of my skin sensitivity and how thin it is right now. It really could be anything, but getting it checked would be benefitial if you've exhausted all of your options. The biopsy shouldn't take 3 months to get, but all it does is pinpoint what your CKD is. I know i didn't cover everything and I apologize in advance for that, but hopefully some of this insight helps.
The issue with the edema (you all here have all ready told me more than the specialist as I didn't know that had a name. Everyone always told me it was because my socks were too tight and I knew I wasn't crazy thinking it was something more, I even got a butt load of new socks)
The itching as you say could be anything, I just feel in conjunction with everything else I feel that it's to do with the CKD.
As I said to someone else I don't think I am going to be able to get a second opinion via the gp so next time I'm at the specialist I'll demand one then.
I'm actually close to taking legal action as this could have been stopped from happening years ago.
Unfortunately a lot of GPs don't worry about CKD until it's progressed to the point of it being irreversible. A lot of problems are lifestyle related (i.e lack of exercise and improper diet) and can be changed to reverse some kinds of CKD and prevent further damage. A lot of doctors also don't think about it until it's too late as well, so there's that. Being proactive and advocating for yourself is key in taking care of your CKD. I'm currently on dialysis (my CKD couldn't be helped- I was born with it) and have to stand firm with my dialysis team often to make sure that I receive the best care. If you bug physicians enough, they either cave or refer you to someone else. CKD is also very individualistic and once your base of preventative measures are taken, all they can do is treat your symptoms and adjust accordingly.
Chronic Kidney Disease is a blanket term for a kidney that is chronically damaged and decreasing in function. The cause of this damage varies from person to person, such as Polycystic kidney disease, glomerolnephritis, etc. That's what I meant for different kinds of CKD. Treatments are highly individualized for meds, food and liquid restrictions and so on.
I just saw your photo and my ankles look similar but maybe not as swollen. I have shown my ankles to every doctor and each says something different, i.e. vein insufficiency, heart failure, socks too tight. The doctor I am seeing now said it could be from my kidneys. I do eat a lot of sodium and my socks are very tight around my ankle. I wear looser socks to bed and in the morning, my ankles are almost normal until I put on my tight socks. I have to wear these due to plantar fasciitis and loose socks make it worse. I'm new here, so I don't have an update on your dilemma. Hope it worked out for you.
I agree, I would ask for a 2nd opinion, from a doctor in a different practice. In the meantime, I would do all that I can to educate myself regarding how I can help myself. These are some resources:
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.
You have to be prepared to become the expert in helping yourself, because sometimes the so-called "experts" do not help us until we are in stages 4 or 5 and then their only concern is dialysis or replacement. If they took more time with those of us in stage 3, many of us would not get to stages 4 or 5.
Everyone pretty much said it all......you need a second opinion. The nephrologist you saw, was he a referral from your GP? or is there someone else he would suggest?
I am so sorry this is happening to you.....it's bad enough that you have CKD but then to have a disinterested doctor! You need to have a conversation with your GP or his nurse to find a GOOD nephrologist. One he can work with and one that will work with you. You need a nephrologist that you can trust and one that will believe what you tell him. Remember this is your life and your health, and you need to be your own advocate and find doctor that answers your questions and looks after your best interests.
Unfortunately when I saw the go the other day to get my numbers they didn't seem that bothered when I told them the issue with the specialist and told me it's best to stay with the same one.
That’s their opinion. You need to say to them that you still need a second opinion, when can you expect a call from a new practice to setup your appt? Second opinions are your RIGHT.
Nobody is mentioning dietary changes.. Is there a pinned post listing things one can do with dietary change to slow progress (and symptoms) of CKD?
For instance, I look at any shop bought processed/cooked food I buy to check salt level.. I seek the lower salt options all the time. That is sodium intake.
Potassium: avoid tomatoes.. Enjoy rice, rather than potatoes if you can, else only eat potatoes that are first cut in pieces and soaked for several hours.. throw away that water, cook in fresh water, and again, throw away the cooking water..
Phosphorus: limit dairy intake, esp dry milk product and cheese..
Bread: (I forget why) eat white bread instead of whole meal. Limit consumption.
Red Meat: try to limit red meat intake and eat more fish/chicken/turkey.
Beans: a good source of fibre..
Any more tips that can help?
I have discovered that some noodles are very low in salt.. That cooked chicken has very variable levels of salt depending on where you buy it..
I've read that major diet changes can be bad until you know what has caused the CKD is that right?
I have though made changes, I've been eating a lot more vegetables, I've also massively cut down on fizzy drinks (I know I shouldn't drink them at all but withdrawal sucks and it's my only vice), I did move to eating brown pasta and rice but guess I'll go back to white.
That's a lot of work to have potatoe.
I do have a lot of cheese, could my kidneys be the reason I don't feel well after having it (I thought I was lactose intoleranant.
I have cut down in salt and fats. For example I made mince with Sweden, carrots and peas the other day. Used mince with 5% fat and reduced salt oxo cubes.
Red meat is going to be difficult as well but obviously need to try.
Do you have high BP, Eating lots of sodium can cause the swelling (fluid retention) you are seeing. High BP and diabetes are two of the most common causes of CKD and ESRD (kidney failure). Some things you can do is diet and exercise.
Well said. These are the dietary changes. Low sodium, including eliminating processed foods such as canned soups, bacon, cold cuts potato chips and other salty snacks.. Hopefully it will assist with but not eliminate the edema.
No red meats..
Minimal dairy..
Lots of fresh or fresh frozen vegetables as they contain less sodium and good fruits such as apples, strawberries and blueberries.
Eggs and eggwhites with vegetables are fine as well as Cream of Wheat cereal.
That's a start and you are right, Shedman!
You sure have been through a time..and no you are NOT a dull boy, you are a smart one.
Zide...Shedman is on track..It really isn't a huge adjustment it is just tweaking a bit.
I suppose this all comes down to personal diagnosis and consideration of severity of problem, benefit of making a change, and motivation..
I'm not determined to live forever, but I'm not keen to drop before I'm 50.
The Dr's missed a blood test a month earlier.. So I lost a month in which I could have looked after my kidney/liver better..
By this point the blood tests were bad - kidney losing protein to urine, blood albumin low.. Dr Google(!) gives scary info on low blood albumin, so I got focused:
No alcohol
No fizzy drinks (all those ingredients with 'phos' in them indicate phosphorus sources..)
No chocolate (a big habit here..)
Then to look at details.. Forget potatoes, tomatoes, limit salt (though I have a comorbidity that makes me sweat a lot.. Maybe I need be careful here), limit cheese, anything with dried/fractionated milk ingredients, and I don't drink milk, but no cream..
Then looking at ingredients on packaging to see that I am getting low salt and avoiding too much trouble.
I am leaning towards chicken and fish, but still eat some red meat.
I've switched to noodles (I don't enjoy rice - had swallowing issues for years and if stressed I find it difficult), white bread..
..and added more beans to meals for the fibre content.
Then started drinking 2 or 3 small coffees per day - not for my kidneys but for my liver..
Ain't I a dull boy?
When I was getting itchy but not knowing why I tried Cetirizine (Zyrtec) antihistamine and it eased that.. But learning likely cause is phosphorus.. I adjusted foods.. Including no big meal before bed, plenty of fluids (yes, I get up through the night to pee and to drink more - but maybe that is because of night sweats), and the adjustments above -- 2 weeks on and last night I did not itch. Relief!
Blood albumin - doctors warn me that this can take months to get levels back.. In context of CKD (not sure what is up with me yet and my eFGR is back from 61 to 73 - has not been this good since January, so I am doing something correct) blood albumin levels might be more compromised..
..I am not a doctor..
But I am motivated to do what I can. My blood pressure is good, and this is a key factor, if I read correctly. On UK NHS the doctors are not chasing me on this, so I must trust they think it a temporary thing -- perhaps I should not be here? -- but I am here to learn anything you folk know towards helping my kidneys and getting better soonest. Such low energy levels these last weeks is debilitating.
Take care and try to find an alternative to fizzy drinks - mostly it is about adjusting taste buds; you know? Give up sugar in tea and it tastes awful for a week or two.. After the two weeks, and tea now tastes awful with sugar in it!
There's not a single person out there who wouldn't be healthier with some exercise and diet moderation. The pandemic did a number on people's habits. Adding fresh fruit and veggies, cutting down on stress, eliminating processed foods where possible 30 min a day of walking, outside if possible, should be taught to everyone starting with kids in school since they aren't learning good habits at home.
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