Renal Thin Base Membrane Disease

[JenNT]

Just wondering if anyone else here has this disease.
I found out 3 years ao after the birth of my second child.
In my first pregnancy i had continual excess protein from Day 1 which they thought was UTI. I was put on so many antibiotics but still ++ protein til the end where it was ++++. I got put in hospital with suspected eclampsia due to the protein, swelling and rise in bp. Baby was induced at 38weeks. At 6 week check up, protein was present but they thought another UTI. Soon fell pg again and protein was back. It wasn't until the 6 week check up that they discovered the protein was still rising and i had to have a renal biopsy :eek: Not nice.
That showed I have Thin Base Membrane Disease of the kidneys.I have to take medication everyday to prevent the condition of my kidneys getting worse.
I guess the aim of this post is to let other sufferers know that a pregnancy is a viable option after diagnosis as i went on to have a third baby recently, was just monitored alot more closely and induced at 37 weeks when the strain got too much on my kidneys. I had to stop medication. I couldn't find much info around the time i was pregnant and thought i would have to abort.I don't want anyone to feel that's an option when it can be managed safely.Be good to hear from anyone who has this as I'm still a bit confused what the future holds. Some doctors say its ok, others say it can end in transplant in 10-20 years.
Any advice would be great,
Thanks Jen

[Mrs Little]

Hi Jen.

You have a very interesting story.

I had high levels of protien in my prenancy. I never had swelling though...or a high BP....the obs. couldn't figure out what was wrong...i wasn't showing any other symptoms or problems.


I am seeing a specailist now...after the pregnancy.... to try to figure out whats wrong....but am not having any luck.

The obs. has told me not to have another baby until we know why i had high levels of protien.

I am curious about what symptoms you had.

Mrs Little & Son.

[JenNT]

Hi Mrs L,
I had none other than high protein. I felt well.It became obvious it wasn't pre eclampsia after the protein continued to be high after the pg had ended.Other than this i would not have known. They kept saying UTI's but i never had any burning etc. It took a while to be finally diagnosed and only because i got a referal to a renal specialist. I had the biopsy done which unfortunately is the only way to find out what is going wrong. An ultrasound can't do this. Do whatever you can to find out as Kidney damage is irreversible and early detection of any renal malfunction can prevent further damage by getting on medication. They have given me a blood pressure drug to take (even though I don't have High BP) but this drug protects the heart and kidneys, called Ramipril /Tritace.
It basically means the kidneys don't filter the protein properly because the lining of the kidney is thin.Like a sieve with fat holes:rolleyes: both kidneys will have it. Not much else I can think of except ask your specialist.
Hope that helps and hope it turns out well for you.If you need an ear PM me anytime.
cheers Jen.

[Bright1]

Hi Jen,
I must thank you for posting your message about this disease. I had a diagnosis of it at age 24 and shortly after it seemed to just disappear - there was no sign of any probs. Then at 36 I was diagnosed with high blood pressure and went on medication. Just over a year ago (at 39) I had my little boy - all went fine with the blood pressure, no flair ups with the kidneys. Then at the start of December (2007) I started getting pains in my right lower buttock - the same I had back when I was 24. I'm not sure what was causing it, but have been very worried that it's this disease again. I would dearly love to have another child and am concerned it won't be possible. So your message has given me hope. I'll be having tests once I see the renal specialist again and am crossing fingers that all will be ok. I am in quite a bit of pain though, so I'm worried.
Thanks again for posting your message & my best wishes to you for good health in the years ahead.
Kind Regards
Sue

[Clareabell]

Hello - I have the same sort of disease.. I was diagnosed with it about 3 yrs ago after my now 5 yr old ds accidently hit me in the nose and I thought I had broke it - I went to A&E and was kept in there for a while as my BP was high....

I went back to my regular Dr to get my BP checked and he gave me an all over checkup which was then that he found my urine was high in protein (it was with my first pregnancy, but they kept an eye on it and thought it was only caused by my pregnancy - it was at a safe level right through till I had DS1) anyway that was when he sent me to a specialist and I had a renal biopsy as well - as you said NOT NICE!!

I am now on blood pressure tablets too - mainly for my protein and kidney function... and I have to do a 24hr urine collection every 6 months to keep an eye on my protein levels.

I have since had another baby, my kidneys worked well considering but was advised to have my tubes tied as the more babies I have the more strain I put on my kidneys....so I now have 2 healthy boys, and that it is for us...

ATM my disease is low grade but my specialist is more concerned for me in 20 yrs time... the worse case serenerio (sorry - spelt wrong) - a kidney transplant...but he says that is very unlikely for me - FINGERS CROSSED!!!:fingerscrossed:

Goodluck to those still wanting/having babies...

[KITTY8]

Hi ladies,
I also have Thin Basement Membranes disease.I went to hospital when i was sixteen with something else and they found high levals of blood in my urine ,it wasnt until i was 21 that i got really run down that a doctor sent me to a specialist . I had a biopsy and was told that i have TBMD i wasnt given any medication just told to see a specialist each year .
I didnt see specialist again until i was 27 as i went overseas and was young and carefree didnt worry me as i didnt have any other symtoms .
When i went to see the specialist at 27 they found a very small amount of protien as well as blood which i cant see. I have been told to have it checked every year by the specialist and that was it ,they think i have had it all my life and said that they cant see it progressing
much futher i dont take any medication still and they said that they know alot more about this disease than when i was first diagnosed.
I am now 37 and have spent the last ten years trying to fall pregnant dh and i went to ivf last year and i fell pregnant on second attempt however we lost that little one at ten weeks .
I tried again straigt away and fell pregnant again and i am now 13 weeks pregnant today
I had a blood and urine test as soon as i found out i was pregnant to check my levals so i can see if there is any rise in protien,i have never had a problem with high blood pressure so its going to be interesting to see how i go .
It is great to know that you have all gone on to have babys as it has been a concern of mine
it gives me hope that i will get through the pregnancy and it is also interesting that there is medication given for TBMD as i have never been offered anything and i have had three different specialist over the time i have had this so it is very good to compare notes .
I hope this finds you all having a great day.

kitty8:smiliedance:

[JenNT]

WOW! I haven't looked back at this post for awhile:shame:
I am actually glad to hear someone else has what i have, sounds weird I know!

Pretty much what you explained Clareabell is what my specialist told me....20 years down the track etc

Fingers crossed this silent disease progresses real slow. I know the damage can't be reversed.

I need to lose weight too,this is my prob atm.
Motivation!

Will check back more reguarly these days:thumbsup:
cheers Jen