Possible IGAn ,possible biopsy, very scared!

[Strange96]

Hi everyone I’ll try and keep this as short as possible

I am 21 and I had my third child on the 31st of May this year. Around 25 weeks pregnant I had blood traces in my wee, around 30 weeks I started getting protein too. BP remained stable the whole time so doctors ruled out pre eclampsia.

Now 8 weeks post baby I’m seeing a renal consultant who has said he suspects I have IGA Nephropathy. I have +4 traces of blood and +1 of protein . He has said he’d like to see me again on the 23rd of August to repeat bloods and urine. If my levels are the same or worst, then he recommends a biopsy.

This scares the hell out of me. I don’t do hospitals, I don’t do needles, and honestly I just feel like crying

I want to know if it’s worth putting it off for now until things become more problematic?

I have no other symptoms apart from the blood and protein . I don’t have swelling, high blood pressure or anything like that. My kidney function was above 90 at my most recent test

So why should I go through a biopsy when I have 3 young children to care for?

I just feel that if it is IGAn they are only giving it a name as there’s no treatment for it anyways, they just treat the symptoms , so really, what is the point?

What would you do? Would you ask to watch and wait? Or would you go ahead?

I’m just sick of being poked and prodded now and honestly I just want to be left alone to enjoy my new baby and being with my family

Anyone available to help me please? I just don’t know what to do anymore

I’m not sleeping, I’m constantly worrying, I feel so depressed and borderline suicidal right now

My family are trying to be supportive but they just don’t understand how frightened I am 😭

[mjaneven]

Hi. When I had a cold, I noticed that my urine was darker than usual so I went to my doctor. I also had blood and protein in my urine and was referred to a Nephrologist. Iga is usually suspected if you have had an upper respiratory infection like a cold. My nephrologist did not feel that I was a candidate for a biopsy because my kidney function was normal and my protein level was below 2000mg. It sounds premature to have a biopsy now. Did you get an ultrasound of your kidneys? Did he do a 24 hour urine test (where you collect all your urine for 24 hours)? Ask your doc why he thinks a biopsy is necessary now. I still have blood and protein in my urine for the past two years but my creatinine level is very low and kidney function has been normal. So I get my urine tested and blood drawn every 3 months and see my nephrologist once a year. I make sure to eat healthy and excercise and monitor my blood pressure. Please do not worry, your babies need you. Worrying will not solve anything. But also do not ignore that you may have early kidney disease. Be proactive and get a second opinion if you don't agree with your doctor.

[Strange96 in reply to mjaneven]

Hello, thanks for your reply

I had a uti one week prior to them finding blood , could that have started it off?

I had a kidney scan in march an that was all normal. Apparently there are 15 kidney diseases that can be seen on blood tests, and all of mine were negative

In pregnancy I had the 24 hour urine thing and I had a level of 369 or something? But that has now halved to 150 something , which he said is great, but anything above 100 deserves investigation?

I did ask why a biopsy would be necessary and he said it’ll be the only way to get a definite diagnosis , but if it’s just to “label it” then I’m not putting myself through that

I have to go back on the 23rd and that’s when he will decide if I need it or not. But surely I can refuse until we have a need to do it?

[Mgt8 in reply to Strange96]

From my experience, doctors don't do biopsys unless they are absolutely necessary.

One doctor, who considered a biopsy after my transplant said.... 'We're not doing it because we might not find anything and you're just left with another 2 holes in your kidney.' Which was a relief to me as I'd already had one biopsy 2 weeks prior.

A biopsy is not painful, it's just inconvenient as there is a possibility of bleeding and I had to lie flat for a few hours after.

Do get a second oppinion if youre concerned and talk through all the alternatives thoroughly because in the end it is your choice.

Good luck

Mgt

[Hidden in reply to Strange96]

It is not just to label the IgAN. A biopsy can also give an idea about prognosis.

[rabbit01]

First of all congrats on being a mum again. Well done! I have IGAN and it was only discovered by accident when my kidneys were already down to 18%. But through diet and some lifestyle changes I managed to keep it stable for the 3.5 years since diagnosis and thankfully am still not on dialysis. IGAN is a very specific diagnosis and I am surprised that it is even being suggested at this early stage in the investigation.

Regarding a biopsy well normally you would have a scan and or an MRI to see if there were any kinks in the pipework or some other abnormality before they would be talking about having a biopsy. Do you know what you eGFR % is from the last blood test? The reason I ask is because if it is still high and it does turn out that you have IGAN then they may well prescribe an immune suppressant which will slow down or stop the IGA release. So it is not true to say there is no treatment for it as there is. I know lots of people who are on this and have almost stopped their kidney decline. Unfortunately for me because my kidney function was so little then I did not get any medication to slow down the decline.

Lastly I am not a doctor but only 8 weeks after giving birth I am not surprised your body is still going through changes and is all up in the air so try to calm down and don't fear the worst.

I know all this is a huge shock. I went through it as did most of the people on this great forum. But nothing is certain yet so try not to get too negative. I think with the feelings you are experiencing you really need to go back to your doctor ASAP and certainly before the 23rd August and explain how this is all making you feel so you can get some help.

[cgalilea1988 in reply to rabbit01]

Hello Rabbit, Thanks for sharing your story. I am currently on stage 2 becoming stage 3 , and I would love to hear about your diet and lifestyle changes, could you please contact me through email [e-mail]

[driffieldpaula]

ive got the same as you.had the biosy.my kidney function is 22% .2 month later nothing else has been done apart from my bp now been alot lower after changing my medication.stop worrying .if you dont want the biospy just yet wait and go when baby is a bit older but ask them to keep checking your blood and urine every few months.im not medical but as a mother thats what i would do

[rabbit01]

Hello, I know it is a scary thought having a biopsy but I was not diagnosed till I was 17% eGFR and by that time it was too late to do anything apart from to send me to the dialysis queue. If you get it confirmed now then they may be able to slow down the progression with steroids and immunotherapy. I would do anything to avoid dialysis. Like you I had no symptoms. I must have had IGAN for years without even knowing it. I had a chest infection in 2014 and that caused a huge flare up. Talk to your doctor about how you are feeling as you should be able to get some help.