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Protein in urine, kidney biopsy. Can anyone hold my hand?

(25 Posts)
grumpybat Thu 13-Oct-11 14:26:26

Been to the doctors today to get my blood results. I have very low albumin levels and very high levels of protein in my urine. I've got a scan and biopsy booked for Mon/Tues as an urgent case.
Has anyone been here before? Could use some hand holding sad

Metalhead Thu 13-Oct-11 14:51:35

I had a kidney biopsy about a month ago - it was absolutely fine! They gave me some painkillers and a sedative beforehand so I was very calm and relaxed during the procedure. They had to take three samples, and the last one hurt a bit (like someone punching you in the back), but it really wasn't that bad. Afterwards I had to lie on my back for about 4 hours, and they kept me in overnight for observation. I felt a bit sore for a couple of days, and my back was a bit bruised where they did the biopsy for a couple of weeks, but all told it really wasn't anything to worry about. Good luck, I'm sure you'll be fine! smile

Silver66 Thu 13-Oct-11 15:03:08

My Mum had a kidney biopsy on Tuesday and didn't feel a thing - she had paracetamol and coedine yesterday but no painkillers since then and she's fine. She had to lie on back for 6 hours but was home the same day. Nothing to worry about WRT the procedure

grumpybat Thu 13-Oct-11 18:38:58

Thanks both- it's a relief to hear I don't need to worry about that bit! Now if I could just calm down about the rest of it......

Elibean Thu 13-Oct-11 18:50:26

Poor you, grumpy - sounds like the not-knowing is worse than the prospect of the actual procedure? I've had liver biopsies, but not kidney...they sound very similar, and are indeed very do-able (I am a classified wuss).

Waiting to know what it all means is not as straightforward (been there too), so if you need a paw to hold, here's mine. Did the doc have any suggestions? Have the ruled out infection? FWIW, my Dad recently had investigations for blood in urine etc etc and despite fears, all is well. I think most of the time, it will be. Hang in there, xx

grumpybat Thu 13-Oct-11 20:18:38

Thanks Eli, it's rubbish waiting isn't it? The doc is being very honest, he doesn't know as it's not anything he studied in depth. At least it's only waiting till Tuesday, but I've put on a stone and a half of fluid in two weeks and I'm really uncomfortable as well as worried!

kunahero Thu 13-Oct-11 20:39:32

Had one about 30 years ago . The one good thing about renal biopsy is you cant see what they are doing!

Lying flat on your back for 4-8 hours is not easy as you cant sleep in case you roll over. Take a book, mp3 etc etc.

its not too bad like they said mild punch in the back. They found bugger all wrong with mine, I also had loads of xrays, scans cameras up the waterworks etc they even put a four inch needle into my bladder with no anaesthetic!!! That hurt. They said my problem was entirely all in my mind.... until I passed a 12mm kidney stone!

Good luck.

Elibean Thu 13-Oct-11 22:26:02

Waiting uncomfortable as well as anxious sounds tough, grumpy...I suppose the only positive in that is that being uncomfortable makes one want to get on and have the tests and whatever treatment you need!

Try not to google: just in case you were tempted, I've done a quick google for you, and there are LOADS of possible reasons for your blood results - not worth even trying to guess which is right smile so explains your GP not bothering to try and guess either. He/she is right to just pack you off for tests, regardless - the sooner they narrow the field, the sooner they can relieve your discomfort.

Hope you have an easy weekend planned!

grumpybat Fri 14-Oct-11 09:42:38

It's going to have to be an easy weekend! My face has decided to catch up with the rest of me, when I woke up it was so swollen I could barely see. Now I just look like an alien sad.
Not going anywhere or seeing anyone for the forseeable.....

whyme2 Fri 14-Oct-11 10:32:18

Hi Grumpybat,

just wanted to reassure you - I has similar sounding problems four years ago and had a biopsy. Turned out I had a condition called Nephrotic Syndrome. I needed steriod treatment for a few months but have been fine since and I just have an annual check up to measure my kidney function now.

Nephrotic syndrome is basically a problem with the filtration done by the kidneys. Make sure you are eating well, low salt diet and I had to limit my fluid intake for quite a while.

Good luck with your biopsy. You will need to be gentle with your self for a few days afterwards too.

grumpybat Fri 14-Oct-11 11:08:58

Whyme2 thank you so much! That's one of the possible outcomes for me and the only thing I couldn't find was the treatment!
It is the filtration that I'm struggling with too it seems. I can live with the steroid course and the low salt. Did you have any long term effects? Will my eyes ever look the same again? Any answers/information so eagerly recieved! smile

whyme2 Fri 14-Oct-11 13:47:41

I had no long term affects although I do understand it can return at any point and some people (mostly older or Asian) can suffer with more problems.

It wasn't straight forward at the time as I was in early pregnancy but I made a good recovery and my baby was healthy. The fluid retention should disappear over a few weeks after you start treatment.

I'm not sure about other treatments as my options were limited due to the pregnancy and also the steroids worked well for me. Left me with a huge appetite though . . . .

ScaredKittyWitchyKitty Fri 14-Oct-11 13:49:11

Hi Grumpybat, I had a kidney biopsy two years ago (two years ago yesterday, in fact!). I had one because like you, I had major fluid retention in my feet, ankles, legs, stomach, arms and face, and put on over a stone in fluid. The docs didn't know what it was but after blood and urine tests they narrowed it down to a kidney problem as I had blood and protein in my urine, but to determine the exact diagnosis I needed a biopsy.

To be honest it wasn't a pleasant procedure but you have to bear in mind that I'm extremely squeamish and don't like medical type things being done to me, iyswim. The whole procedure took about an hour - I know that because when I left the day ward to go down to the procedure room Jeremy Kyle was just coming on the TV and when I came back This Morning was just starting grin. I had to lie on my front as they go through the back to get to the kidney. I wasn't offered a sedative because when they were doing the actual collection I had to hold my breath and they can't rely on you to do that properly if you're sedated. Other people seem to have had sedation though, so maybe it depends on the hospital.

Back on the ward I had to lay flat on my back for 6 hours - I was allowed to sit up slightly to eat lunch (very awkward at such a funny angle) but then had to lay back down again. I took a book, watched TV and slept. I had to use a bed pan to have a wee while lying down. This is a feat in itself, believe me. Oh and just to warn you, your wee goes bloody for about 12 hours but it's perfectly normal.

It turned out that I have the kidney disease Mesangiocapillary Glomerulonephritis and I was put on a cocktail of seven drugs to reduce the symptoms and control the disease. Fast forward two years and the disease is under control, has reduced from stage 3 which I was at when diagnosed to stage 1, and I'm only on one drug now. I'll have this disease for life and in theory it could regress at any time but at the moment I'm in good health - with no swelling!

I know this is long blush but what I'm trying to get across is that knowing is better than not knowing, and even if you're diagnosed with a form of kidney disease it's not the end of the world. Hope it goes ok next week.

grumpybat Fri 14-Oct-11 17:42:19

Hi fellow kidney people! Thanks for getting back to me with your experiences, it does help to know what I've got to look forward to (?).

Having a wee lying down is something I shall await eagerly....

Can either of you give me an idea of your timeframe? I know I shouldn't be, but I'm worried about taking too much time off work. How long was it until you stopped swelling/being so damn tired/bursting into tears at random times?

And also....what about wine? Will there ever be any more or am I consigned to apple juice for all eternity?

whyme2 Fri 14-Oct-11 18:26:45

Oh I had forgot about the wee lying down thing. blush

It took me about 2 weeks to fully recover from the biopsy - I wasn't allowed to lift anything to reduce the risk of bleeding/blood clots and my back ached for a while.
I really began to feel better after about a month of treatment - but my treatment only started a week after the biopsy. After I was well for 3 months ie all blood and urine tests coming back as normal, the doctors slowly reduced the steroid dose until I came off it completely. Treatment was a total length of around 7 to 8 months. by which point I gave birth to a healthy ds.
What kind of job do you have grumpybat?

I didn't drink at the time as I was pregnant but I do now in moderation blah blah blah

When you see your consultant after you have had the biopsy is when you need to ask questions. They should be able to give you some more helpful answers and timeframes.

As I said earlier I have been well for four years now with no problems and live a normal life.

Good luck and try not to worry over the weekend. smile

ScaredKittyWitchyKitty Fri 14-Oct-11 19:09:33

Hi Grumpybat,
I had the awful tiredness as well as swelling, it's awful isn't it? I remember I used to find myself drifting off while I was driving (not good) and I could hardly bend my ankles due to the swelling, so had to walk up and down stairs kind of sideways so I didn't have to bend them. None of my shoes would fit either so I had to live in flip flops and flat slip on ballet pumps, and refused to wear skirts or cropped trousers as they wouldn't cover up my fankles.

The doctor who did the biopsy came to see me around 4pm the same day while I was still in hopsital, to inform me that the initial results showed that I most likely had CKD (Chronic Kidney Disease) but they needed to do a more detailed analysis. I had my biopsy done on a Tuesday and the consultant actually phoned me at home on the Friday - so three days later - to tell me what the full diagnosis was and I started on my medication the same day and googled for England. It took a good few weeks for me to feel fully better and it was a bit longer before the swelling went down completely. In fact, they ended up increasing my dose of diuretics because they felt I wasn't losing the fluid quickly enough. I was on steroids and a mix of other drugs for about 11 months in total but am now only on one drug. At first I had to see my consultant weekly, then as I improved it went down to fortnightly and so on, and now I only see him every four months smile.

Like Whyme2 after the biopsy I was advised not to lift anything for two weeks and to really take it easy because with this procedure there's a risk of internal bleeding while the kidney recovers. My DS was 3 at the time and my parents had to pop round and lift him into the bath because I couldn't! I was ordered to take the rest of the week off work to rest and also not to drive for the rest of the week - luckily I was able to give work a couple of weeks' notice and they were fine with it. At the biopsy site on my back I had a small cut and within a couple of days a MASSIVE bruise appeared around the cut. It was quite achy for a week or so but nothing too awful.

I was never a big drinker anyway and now I hardly ever drink. I figure my kidneys are already fucked so I can do without my liver going the same way grin.

Try to relax this weekend and remember that at least soon you'll know what's wrong and can get treatment started, so you'll start to feel better. Please let us know how you get on and also what your results are.

grumpybat Fri 14-Oct-11 20:18:01

I'm trying to do the relaxing, I've spent the day on the sofa/on the doctors sofa! I keep feeling a bit better then standing up and thinking "oh. maybe not".

Unfortunately I'm a peri music teacher, which involves lots of travelling between schools, lots of lugging instruments around and lots and lots of kids! I love it but have recently found it excessively shattering. I'm off till after half term but I don't really want to go back until I've stopped looking so odd, I scare young children with my alien face sad.

I shall look into this moderation of which you

Metalhead Sat 15-Oct-11 09:37:32

My case is a bit different as I didn't have any swelling etc., just crushing tiredness. Was diagnosed with an autoimmune disease which caused the kidney inflammation. I've been on a low dose of steroids now for two months, and within 2-3 days felt like I'd been reborn!

Regarding alcohol, my consultant said I can do what I want, so I've been drinking my usual glass of wine most nights, and on a few occasions two or three, without any adverse effects (well, apart from a slightly sore head the next morning...).

whyme2 Sun 16-Oct-11 18:26:18

Just wanted to wish you luck for tomorrow grumpybat
Will be thinking of you.

Elibean Sun 16-Oct-11 18:48:59

Good luck for tomorrow, grumpy, sooner the better by the sound of it smile

ScaredKittyWitchyKitty Sun 16-Oct-11 19:43:03

Another one saying good luck. Log in while you're off work resting afterwards and let us know how you got on. smile

grumpybat Tue 18-Oct-11 20:27:18

Hello all. Thank you for your good luck wishes. It all got a bit wobbly on Sunday morning and I went into hospital in an ambulance first thing.
Been on the ward for a couple of days and had my biopsy today. I'm home again now and the preliminary results are good.
I'm taking the mahoosive cocktails of steroids etc for the forseeable future but at least I'm going to be OK.
I'll come back and give you a gruesome detail post tomorrow, just checking in to say thank you for your thoughts and to let you know that I'm OK.

whyme2 Tue 18-Oct-11 20:32:07

So glad to see your post grumpybat At least you are home now and can relax a little.

ScaredKittyWitchyKitty Tue 18-Oct-11 22:46:39

With the drugs already started, you should start to feel better soon. Glad you're back home, and will check back for your full report tomorrow.

Elibean Wed 19-Oct-11 10:15:02

So glad its all done and prognosis is good, grumpy - hard to rest when on steroids, but try wink

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