scared and everything is taking so long! - Kidney Disease

Kidney Disease

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scared and everything is taking so long!


So years and years ago when I was in my mid teens, I was told I had a kidney that was to small. I couldn't get to the hospital they wanted me to go to for a biopsy so they said "we will continue to monitor"

Well that stopped after 1 year.

I have been in and out of doctors for about 15 years with migraines as well.

I will get blood tests and do urine tests and get told there is protein in my urine and that its protoneuria but that's where that ended.

im now 33 and I recently had one of the worse bouts of migraines I have ever had and end up off work for a week, doctors check my bp and its way to high (sorry I forget the levels it was something like 180 over 160)

I was then given blood pressure tablets and some anti depressant for the head ache. I suddenly started having chest pain after 2 days, so I go back and they do an ECG I think at the GP surgery and they said the muscle around my heart is hard (or something like that) which shows the BP issue has been there for years.

They then send me to a day unit at hospital that day, they do my BP which is obviously still really high.

A lot of back and forth over the last 2 months getting told stuff i dont really understand, that I have blood and protein in my urine and indicators in blood tests show that there is something wrong with my kidneys, finally have a ultra sound last week and turns out both kidneys are too small.

I don't have another specialist appointment till the 19th after seeing him for the first time a couple of weeks ago but all he did was make me have more blood tests and told me to come back after the ultrasound, didn't explain anything that has already been going on!I am really worried as I don't know what to do as my GP has been pretty clueless with the whole thing.

A lot of the stuff ive suffered with over the years can be traced to CKD (always tired, headaches, my shins will swell up, I get random itching for no reason, up and down appetite, going for a wee 2 - 3 times a night and other things)

Sorry if this made no sense.

5 Replies

See a nephrologist immediately.

zide in reply to Marvila45

I'm waiting to see one on the 19th. I saw them already but they literally just asked the same stuff the doctor did and said come back after your ultrasound

BassetmommerNKF Ambassador

Dear Zide,

Unfortunately, many doctors do not seem to consider kidney issues until they become a certain stage, like stage four. I am not sure where you live and what kind of medical care you have, but you need to advocate for some answers, which you already know. Do you have labs and have you had a recent renal panel done. Check things like the creatinine and GFR. They are indicators of kidney stages. When you see the specialist, which I hope is a nephrologist ( kidney doc) ask about those things. I am sure that is why they sent you for more labs. They also needed pictures of the kidneys to see what might be going on.

It is a slow process but it sounds like they are trying to understand your needs, even if it is taking a long time. When you see the specialist, be prepared to ask certain questions. Ask about interactions of the current medications you are on. Ask about diet and see if you an see a renal dietician. Ask about the correlation with the migraines and BP.... and kidneys.

I know it is nerve wracking and you are worried, and that's not helping. There IS a lot you can do to help your kidneys and many, many people live normal lives with impaired kidneys. This group is a great place to start, so let us know how things go for you with your specialist visit. Keep asking questions.

Best of luck.

Bet117NKF Ambassador in reply to Bassetmommer

Well put! Please keep in touch!

When you see the kidney specialist it will be important to find out what stage of CKD you have. This will be determined by your GFR (a blood test). That will help you better understand what you are facing and what you can do to protect your kidney healthy or be proactive with learning about treatment options.

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