Worth the risk?

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ScrapheapHuman
Posts: 109
Joined: Mon Apr 15, 2013 12:24 pm

Worth the risk?

Post by ScrapheapHuman »

I am going to be 30 in a few weeks, I currently have 2 children already who are 8 and 5. I have always wanted 3 children, don't know why, but I am so desperate for another baby that is makes my heart phsyically ache. In Dec 2012 hubby and I talked about trying for another baby, we discussed about speaking to the renal team in the May 2013, changing my meds to pregnancy safe once and waiting for 3-6 months before trying to make sure everything was all good, get baselines for bloods etc. However, in the March that's when my kidneys dipped and everything turned upside down.

Since then, my kidneys 'got better' my eGFR shot back up as quick as it dipped, it has started to very slowly go down again, but very gradual. Hubby and I have been talking about, and he knows how much I desperately would love another baby and has said he will come with me to my June appointment and see what they say.

I know they will never say 'no' and that they can only advise, but if they really did think it was a terrible idea, would they make this very clear, so carry on being vague, is it worth the risk?
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means it’s going to launch you into something great. So just focus and keep aiming.

http://scrapheaphuman.blogspot.co.uk/
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Worth the risk?

Post by wagolynn »

Hi ScrapheapHuman,
I think the best you can expect from your consultant is an appraisal of the risks and problems in a very neutral way. You would then have to do a lot of homework to evaluate what you had been told. Due to the BP figures you have mentioned, I think you would be hospitalized early in the pregnancy for yours, the babys, and your kidneys, protection.

Having said that, I am male, and only a patient that reads a lot.

Best wishes.
Dotty
Posts: 160
Joined: Tue Mar 25, 2014 7:16 pm

Re: Worth the risk?

Post by Dotty »

Hi,

Having "waited" 10 years for my boys, I fully understand the overwhelming urge to have another child.

But is it really worth the risk of your children having to do without you if it all went wrong? only you and you husband can answer this.

I wish you good luck as you make your decision.

regards
dotty
47 years old.
IGA Nephropathy diagnosed May 2013 with eGFR of 22%
PD dialysis started May 2014
3rd PD catheter fitted and failed July 2014
Hemodialysis started July 2014

Red Lippy and PMA (Positive Mental Attitude) gets me through each day!
sporti
Posts: 355
Joined: Fri Aug 25, 2006 7:51 pm

Re: Worth the risk?

Post by sporti »

Hi

I was told in 1982 when I had my daughter as my function was 63% no more babies for me as too risky. I decided I was lucky to have one so accepted it. It would be a gamble to say the least to go for a third. However everyone is entitled to gamble and sometimes it will pay off. I gambled when I was diagnosed with stage 1a grade 1 ovarian cancer. They wanted me to have 3 chemo treatments - I refused them to protect my kidneys and I'm still chugging along. You just never know - it could easily go the other way. Personally I wouldn't but understand your dilemma. Good luck
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Worth the risk?

Post by AmandaClare »

My sympathy - I only have the one child and would love another. But my son was delivered prematurely and while he's OK we wouldn't take the risk again.

If you can, get to speak to the obstetrician who manages renal patient pregnancies in conjunction with the nephrologist. In my experience the doctors may lay out the worst case scenario rather bluntly. But as you say, in the end it's still your decision.

Is waiting until after your transplant another option? Though I realise that may not happen for ages, and then you'd have the worry of your age.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Worth the risk?

Post by rheaybou »

I had many sleepless nights thinking over wanting kids/having kids with my renal problems and the chance that they would also inherit the same problems. How would I cope being on dialysis as a parent, not being around to help raise them if the worst happened.

You have a very tough decision to make, but my experience with renal medicine is that you will get lots of help and advice.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
ScrapheapHuman
Posts: 109
Joined: Mon Apr 15, 2013 12:24 pm

Re: Worth the risk?

Post by ScrapheapHuman »

Thank you so much for the repleies. It is so hard, even the question 'Is it worth the risk'... 'it' could actually end up being a he or she, and if you got to hold them in your arms, look at their face, smell their newborn gorgeous smell, you think TOTALLY WORTH THE RISK! But because at the minute it is just an 'it'... infact it's not even an it it's a 'possible it'

My first pregnancy I was in and out of hospital constantly for 'pre eclampsia' but I did not have pre-eclampsia, all my blood work pointed to that, but I was not symptomatic, and the consultants used my liver function as the base line marker. So the midwives and registrars would panic and admit me, then the next day the consultant would let me go. I did end up getting pre-eclampsia at 37 weeks, and was induced.

My second pregnancy I knew everything I needed to know, how it felt, what to check and this time the consultant wrote in my note "DO NOT ADMIT UNLESS SYMPTOMATIC" in a pink flourscent marker! It was planned I would be induced at 37 weeks, however at my 36 weeks appointment I was doing so well we mutally decided to go for the induction at 38 weeks. But literally by 37 weeks I got that feeling again, went straight to hospital and induced there and then. I had regular appointments with the renal team and gynae consultants and everything as I was supposed to.

Both pregnancies were a surprise, but if I was to have another, it would have to be carefully planned. I would change my meds and make sure everything was safe. If I changed my meds and they didn't work as well, then I would at least be able to say we gave it a try. But to point blank not even try kills me.

I find myself getting jealous, and I hate jealousy. My sister in law had three kids and last year announced she was pregnant and whilst I was thrilled for her and I now have another utterly gorgeous nephew, it kills me inside each time I see them. I hate feeling like that.

We have discussed the possibility of surrogacy and adoption, but not really sure how all that works.

Sorry for rambling on :oops:
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means it’s going to launch you into something great. So just focus and keep aiming.

http://scrapheaphuman.blogspot.co.uk/
lainiepop
Posts: 121
Joined: Thu Mar 29, 2012 5:42 pm

Re: Worth the risk?

Post by lainiepop »

Hi.

I am 32 and i have a boy who will turn 7 in October and a girl who will be 3 in a month. I went through a phase of being broody for another at age 30 funnily enough i think its a natural thing as u know times running out but im way over it now and would not have wanted 3 kids as our two are so close, not to mention the whole bigger car bigger house everything costing more etc. We are looking forward to hopefully going to florida next christmas and doing more things with them as a family now we are out of that baby stage!

You dont mention your gfr but i will tell u how mine went. I conceived andrew easily with a gfr of almost 40. I had relatively few problems until the month before birth where my creatinine went up from 160 in a few weeks to 260. They induced him a week early and he was born naturally and healthy but i developed post delivery pre eclampsia and was very poorly for a week with fluctuating blood pressure. Luckily being only 25 my body recovered and my creatinine settled to around 190. . My renal doc was annoyed cos he wanted him out a month early but obstetrician said i was doing fine! I said id never have another lol

However broodiness kicked in as my friends had 2nd ones close together. My creatinine was fluctuating between 170 and 190 sometimes 200 but they said it was fine to try, they can't actually stop you, but it didnt go the same, as pregnancies dont even for healthy normal people. i took 18 months to conceive elena (probably due to my kidney but could be anything, my best friend conceived her first in a weekend and 2nd took over 2 years), so that is something to consider if u are going to try, u dont know when it will happen. Well blood test when i was 8 weeks pregnant showed creatinine was 260, big big shock, my world fell apart, i was told i'd need dialysis to sustain the pregnancy and it would be case of if they could get the baby far enough to be viable. I felt awful that i had done this, why hadnt my son been enough for me? Anyway i vowed to do whatever it took to fight for my baby, and miraculously the creatinine dropped to 230 and stayed stable the whole pregnancy, i avoided dialysis. My perfect little girl was delivered 5 weeks early by c section weighing a diddy 3lbs 12, but she was so strong and healthy she didnt need special care. Her weight dropped to 3lbs 7 but she was so strong she came home at a week old weighing just 3lbs 9. She is still my diddy doll, but so tough she can sort her brother out ;)

When i delivered Lena my gfr had dipped to 17, a couple months later i got the news it had dropped to 10 and i would need dialysis in weeks. I sat there blankly with a 3 month old baby and a just 4 year old boy wondering what i would do. My parents began work up to be donors and my dad was approved the best match with a great working kidne for his age, 9 months later we underwent the surgery a couple months before Elena turned 1. I was incredibly lucky that my gfr just stayed at 10 and all my other numbers were in normal range so they didnt want me to do dialysis as i wasnt ill. I have had my dads kidney for 2 years and it works amazingly, i have more kidney function than ive ever had in my life and am on less pills than before transplant. So in a way i feel that elena and dad gave me a new life! (did not feel like that going through it all tho!)

I was incredibly fortunate that things worked out the way they did, and am very happy that i completed my family before i got my dads kidney, my husband had a vasectomy 3 months before the tx, i was reluctant at first, so was the doctor, but he and i both agreed when my husband summed it up, yes were are only just 30, but we have a boy and a girl and we would not want to have n accident and choose between a baby or a kidney. My dad gave me this kidney to raise my family and live our lives, i could never risk it for another baby, even tho i did yearn at one point. They didnt understand how i conceived elena and after tx u r highly fertile so my kidney docs were happy when i told them steve had had the snip!

Nobody can tell you whether the risk is worth it for you and your family, as nobody knows what will happen during any pregnancy anyway. You have to weigh it up together how it would effect your family if certain things happened, but i know from experience that if u really want to do it nobody will stop you! Personally now i have seen healthy friends struggle with infertility and my best friend had a stillbirth this year, i feel blessed that i have my 2 kids and i know doctors are still baffled how my daughter is here today! Talk to your doctors about your gfr and how close you are to tx, as honestly when i was trying for elena it seemed a long way off then when i delivered we were suddenly there, particularly consider the ages of your children they are old enough to be affected more. My son was 3 when i conceived her, almost 5 when i had the transplant, he understood enough but not enough and luckily wasnt at school yet, and we are incredibly lucky he wasnt old enough to associate me getting ill with his sister. In fact he adores her ! I had an emergency op on my bowels a couple weeks ago and he's been a lot more worried bout me now hes that much older, but i just explained needed to recover and the kidney was working fab, which is the assurance he needed.

Sorry gone on a bit! But i do know what its like to feel like u do, so id look into it sooner rather than later if ur serious and have a good chat wih hubby bout all the what ifs and how ur other kids would be affected if the what ifs happened xx
1982 - born with one imperfect kidney, no bladder
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Worth the risk?

Post by AmandaClare »

What a story lainiepop! But you made me snort by talking about time running out at 30. I was 38. Of course my pregnancy didn't go very well but I know other transplanted women of a similar age who've gone to term.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
lainiepop
Posts: 121
Joined: Thu Mar 29, 2012 5:42 pm

Re: Worth the risk?

Post by lainiepop »

lol Amanda. My mum sort of instilled in me to have my kids young, as she unfortunately struggled to conceive me (an only child). Lucky she got married and tried right away young as they were trying for 14 yrs and she had me at 35 (that was considered geriatric 32 yrs ago, she only knew about my one kidney and no bladder because she got an ultrasound, only given to mums over 30). She always said you cant wait til you'r 35 or we'll be too old to play with the kids lol. It was always in the back of my mind, as was the issue of it possibly taking many yrs, plus the kidney problem. My consultant told me when i was 25 i was optimum age and that was the only positive thing lol amongst all the risks of the kidney. I remember the obstetrician typed out this big list of possible 'could go wrongs' and at the end was this reassurance of my age. Ive still got that letter lol.
1982 - born with one imperfect kidney, no bladder
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
Andy
Posts: 856
Joined: Sat Apr 24, 2004 1:02 pm
Location: Cardiff, Wales- now Christchurch New Zealand

Re: Worth the risk?

Post by Andy »

Hi,

Just read your post and replies with great interest.

I wish you all the best and hope that the risk is minimal, I guess seeing as you have done it before that at least you know what the tell take signs are.

All the very best of luck.

Cheers
Andy
We are the way we are, if we werent, I wouldnt be me and you wouldnt be you!

www.lltgl.org.uk
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