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Kidney disease

B

BallyBall81

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Hi, I'm new to the forum. I'm 34 and have had T1 now for 20 years. I have one daughter already but recently found I am pregnant (unplanned) with my second. My HBA1c was 82 which I know is bad.. But when having routine blood and urine tests it showed I have large amounts of protein and blood in my urine so was sent to a nephrologist who told me I have kidney disease. I have annual reviews and the last one showed microalbuminuria and discussed ACE inhibitors and keeping an eye. My creatinine levels at the last test (9wks pregnant) were 99. I don't know what stage I'm at, but the nephrologist said dialysis/transplant would be imminent and said the average is in 5 years. We've been told there is a 10-20% chance having the baby could damage my kidneys further beyond repair, and 10% chance we could leave the hospital without a live baby. We have been told to consider the options. My head is fried and I'm so scared I'm not sleeping and constantly panicking. I have no experience of kidney disease and the thought that I won't be around in 5 years to see my daughter grow up is petrifying me. I need some advice and to hear other experiences if possible before I crack up xx
 
Last edited by a moderator:
Hi and welcome to the forum.

Understandable that your stressed and panicking, I'm going to move your post up the forum in the hope that you get some replies. Good luck and best wishes.
 
Hi ballyball81
My story is a bit different to yours but I thought I might be able to offer you some reassurance. I was diagnosed with kidney disease in 2001,I was not diabetic at the time. My creatinine then was 150 and I was told I would not be able to go full term with a baby and that I would need a transplant in 2-3 years. In 2012 I gave birth to a healthy baby boy:) My kidney function did decline as a result of the pregnancy and I subsequently went on dialysis in 2013. But bear in mind this is 10 years later then my doctor had predicted (and my creatinine was220 when I got pregnant). I had a kidney transplant last year and it has gone really well. I feel great, the only downside being that I have developed steriod induced diabetes (which I am managing really well with diet thanks to all the lovely people on this forum).

Try not to worry, in my experience doctors often give worse case scenarios and even if the worse were to happen kidney disease is very treatable these days.
Cathy
X
 
Hiya BallyBall81,

Being a bloke I can't answer the pregnancy specific queries, but one of your point was not knowing what stage of Kidney Disease you're at.

If they're advising Transplant needs are imminent but you've not yet started dialysis treatment then the most likely stage you'll be at is Stage 4 of a possible 5 stages.

Being at Stage 5 and on Dialysis as of last week my advice would be get in really tight with your Nephrologist. I now attend a joint Renal/Diabetic clinic and a separate Renal Clinic at my local hospital as opposed to trying to get the 2 to communicate so if this is an option for you I'd highly recommend it, it has made organising diabetes AND kidney related problems for me so much easier and I've never had conflicting advice or opinions since it started. I'm now at the stage where I am able to email my Nephrologist with questions or to chase things up due to the relationship we've developed and it's making the whole experience a lot easier.

The other thing that is worth doing if it's not already being looked in to is to get both the Transplant Registration Process started and the ground-work for starting Dialysis done as well, unfortunately starting Dialysis isn't as simple as TV makes out and you can't really just walk in and get connected up to the machines, there's 2 main methods for dialysis and both require preparation which at minimum should take up to 6 weeks so it's worth discussing these options now and getting things organised, than developing a pressing need for them, especially with a little 'un on the way, I'd imagine you're going to want to be ready to start at the drop of a hat when the need arises :).

The good news, it is NOT as glum as it feel right now - the transplant success rates are massively high, well into the 90's in terms of percentages. The wait times in your area may be 5 years AVERAGE, but your individual wait time *could* be less, it breaks down in to blood groups so whilst type-O may be 5 years, type AB could be 1.5...best person to give you accurate data on this will be your Transplant Co-Ordinator (who is another person it's worth getting in tight with once you have one). The waiting list also works off of points and the longer you're on it the more points you get, so getting on it early in the process (i.e before you really NEED the transplant) is 110% worth doing and chasing up, there can be other factors (your pregnancy may well be one of them I don't know) that can bump the amount of points you get up so make sure you tell them everything when the time comes, you'd be surprised at how quickly you could move up the list just because you happen to have something happening. I'm 30 this year so not much younger than yourself and been told my age is a positive contributing factor that gains me points so you will probably find yourself gaining an advantage there as well :).

Whilst it's a very serious condition to be dealing with and the pregnancy stress will likely make it seem even more daunting, and it will change a great deal of things about your life going forward, medical professionals tend do tend to paint a very bleak picture sometimes so they don't get peoples hopes up, but for every one story of someone having a tragedy happen to them during pregnancy because of Kidney Disease like they've 'warned' you about, I reckon there'll be far many more Cathys8's out there who had a great success and you have every chance of being one of them :).

Sorry for the long post - but hope some of that helps! :D
Take care!
 
Andy_D85 said:
Hiya BallyBall81,

Being a bloke I can't answer the pregnancy specific queries, but one of your point was not knowing what stage of Kidney Disease you're at.

If they're advising Transplant needs are imminent but you've not yet started dialysis treatment then the most likely stage you'll be at is Stage 4 of a possible 5 stages.

Being at Stage 5 and on Dialysis as of last week my advice would be get in really tight with your Nephrologist. I now attend a joint Renal/Diabetic clinic and a separate Renal Clinic at my local hospital as opposed to trying to get the 2 to communicate so if this is an option for you I'd highly recommend it, it has made organising diabetes AND kidney related problems for me so much easier and I've never had conflicting advice or opinions since it started. I'm now at the stage where I am able to email my Nephrologist with questions or to chase things up due to the relationship we've developed and it's making the whole experience a lot easier.

The other thing that is worth doing if it's not already being looked in to is to get both the Transplant Registration Process started and the ground-work for starting Dialysis done as well, unfortunately starting Dialysis isn't as simple as TV makes out and you can't really just walk in and get connected up to the machines, there's 2 main methods for dialysis and both require preparation which at minimum should take up to 6 weeks so it's worth discussing these options now and getting things organised, than developing a pressing need for them, especially with a little 'un on the way, I'd imagine you're going to want to be ready to start at the drop of a hat when the need arises :).

The good news, it is NOT as glum as it feel right now - the transplant success rates are massively high, well into the 90's in terms of percentages. The wait times in your area may be 5 years AVERAGE, but your individual wait time *could* be less, it breaks down in to blood groups so whilst type-O may be 5 years, type AB could be 1.5...best person to give you accurate data on this will be your Transplant Co-Ordinator (who is another person it's worth getting in tight with once you have one). The waiting list also works off of points and the longer you're on it the more points you get, so getting on it early in the process (i.e before you really NEED the transplant) is 110% worth doing and chasing up, there can be other factors (your pregnancy may well be one of them I don't know) that can bump the amount of points you get up so make sure you tell them everything when the time comes, you'd be surprised at how quickly you could move up the list just because you happen to have something happening. I'm 30 this year so not much younger than yourself and been told my age is a positive contributing factor that gains me points so you will probably find yourself gaining an advantage there as well :).

Whilst it's a very serious condition to be dealing with and the pregnancy stress will likely make it seem even more daunting, and it will change a great deal of things about your life going forward, medical professionals tend do tend to paint a very bleak picture sometimes so they don't get peoples hopes up, but for every one story of someone having a tragedy happen to them during pregnancy because of Kidney Disease like they've 'warned' you about, I reckon there'll be far many more Cathys8's out there who had a great success and you have every chance of being one of them :).

Sorry for the long post - but hope some of that helps! :D
Take care!
Click to expand...
Andy, that's some really great advice there.
 
Hi Andy_D85. Thank you so much for your reply and support. Unfortunately we were advised that my body couldn't cope with the pregnancy as it was declining fairly rapidly and my nearly 5 year old has special needs so I didn't feel I had a choice but to not carry on with the pregnancy. We are heart broken but ultimately I have to stay as healthy as I can for her. I'm still absolutely petrified of the kidney disease. I was told I was 'just' into stage 3 which is more positive than I thought and there is a chance that with better control and not being pregnant any more I could possibly regress to stage 2 and could take medication to stabilise. I've been too scared to go back and get the tests needed.
 
BallyBall81 said:
Hi, I'm new to the forum. I'm 34 and have had T1 now for 20 years. I have one daughter already but recently found I am pregnant (unplanned) with my second. My HBA1c was 82 which I know is bad.. But when having routine blood and urine tests it showed I have large amounts of protein and blood in my urine so was sent to a nephrologist who told me I have kidney disease. I have annual reviews and the last one showed microalbuminuria and discussed ACE inhibitors and keeping an eye. My creatinine levels at the last test (9wks pregnant) were 99. I don't know what stage I'm at, but the nephrologist said dialysis/transplant would be imminent and said the average is in 5 years. We've been told there is a 10-20% chance having the baby could damage my kidneys further beyond repair, and 10% chance we could leave the hospital without a live baby. We have been told to consider the options. My head is fried and I'm so scared I'm not sleeping and constantly panicking. I have no experience of kidney disease and the thought that I won't be around in 5 years to see my daughter grow up is petrifying me. I need some advice and to hear other experiences if possible before I crack up xx
Click to expand...


Hi
I am rather confused by your creatinine levels.99 is in the normal range so why is imminent treatment needed ? It's a shame you don't know what your gfr is as that would help you to know what stage you are at, Did they tell you what your Urea levels were ? I have had kidney disease for many years and today I have been to the renal unit for instruction on dialysis which I will need to start at some time in the future.You really need to know where you stand.If you can't get back to see the nephrologist, go and see your gp and ask him to explain exactly what problems you have with your kidneys.I really cannot understand why you need a transplant with a creatinine level of 99.Good luck
 
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