Coping with not having children

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Re: Coping with not having children

Postby MandyA » Thu Apr 02, 2015 8:42 pm

I have no experience of having children with renal failure myself....

However, I know that at my unit, The Royal London Hospital, they have a special clinic once a month for people with renal failure who want to become pregnant.

This is run by a consultant who is very experienced with both renal issues and gynaecological ones.

The hospital set this clinic up a few years ago because of the increasing number of younger patients with renal failure who wanted to start a family.

Regards,
Mandy
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Re: Coping with not having children

Postby midgetem » Sun Apr 12, 2015 9:45 am

Wow Mandy that clinic sounds useful unfortunately nothing available in oxford.

As an update I spoke to my old consultant (he got promotion and stopped doing renal clinics) but he has arranged a meeting for me with an obstetrician who works with a lot of dialysis patients etc as he says pregnancy is possible but their is a chance I may need dialysis etc so apparently this obstetrician will be able to talk through it all with me.

he has also changed my blood pressure medicine to one that is pregnancy friendly. Whilst its still not a guarantee starting to feel more positive about the process.

Thanks all for your replies and I will update you when we have more information.
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Re: Coping with not having children

Postby MandyA » Sun Apr 12, 2015 8:13 pm

That sounds like a good start....

You could try suggesting that they run a special clinic like they have at the Royal London Hospital at your hospital (John Radcliffe?). Then you would get to meet other people in the same situation as yourself, and be able to talk through the issues with each other, as well as seeing an expert consultant.

Mandy
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Re: Coping with not having children

Postby Keysersoze » Sun Apr 19, 2015 9:57 pm

You might laugh at this as a stupid question but can men with serious high creatinine levels (800 at the moment) have children?
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Re: Coping with not having children

Postby AmandaClare » Mon Apr 20, 2015 12:10 pm

No such thing as a stupid question. Many men seem to suffer reduced fertility with severe kidney disease.

Some info here: http://www.kidney.org.uk/help-and-infor ... ms-father/
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Coping with not having children

Postby Keysersoze » Mon Apr 20, 2015 12:47 pm

AmandaClare wrote:No such thing as a stupid question. Many men seem to suffer reduced fertility with severe kidney disease.

Some info here: http://www.kidney.org.uk/help-and-infor ... ms-father/

Thank you. I'm 33 and new to this. Start dialysis in a week
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Re: Coping with not having children

Postby midgetem » Tue May 12, 2015 11:05 am

Hi all,

So I thought I would update as we saw the obstetrician yesterday.

She was very helpful and positive about our situation. She actively encouraged us to try. She did mention their is a risk but as my blood pressure is well controlled (it was 114/78 at r he hospital ) she doesn't see any reason why we can't try.

Therefore she gave me a prescription for folic acid and aspirin which is meant to help before and during pregnancy. Therefore we have decided to start trying in June if my blood pressure is still good in my renal clinic.

Quite excited about being the given the chance to try and the obstetrician has told us to ring her if we get a positive pregnancy test so we are under her care straight away rather than start with the midwives. Just hope everything goes to plan.

if we are lucky enough to get pregnant I will be sure to come amd keep you all updated :)

thank you to everyone who gave advice it certainly helped us to have the confidence to go beyond the consultant.
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Re: Coping with not having children

Postby Thumps » Tue May 12, 2015 11:15 am

That's good to hear :) Wishing you all the best.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
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Re: Coping with not having children

Postby AmandaClare » Wed May 13, 2015 6:01 am

Great news that you're getting all the support you need. Keeping fingers crossed for you.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Coping with not having children

Postby rheaybou » Wed May 13, 2015 7:09 am

Thats very positive news and great that you will have expert support. Wishing you all the best and fingers crossed for renal clinic
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.
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Re: Coping with not having children

Postby Carmel » Wed May 20, 2015 10:27 am

Hi, I also had a baby with a transplant . I can't remember what my creatinine was at the time. ( around 120 ) But baby came naturally about a month early, which was good as the pregnancy put pressure on my kidney which started rejecting. But after the birth went back to about 120 . The hospital monitored me frequently so there was no worries. I did / do feel discouraged and unsupported about another pregnancy too. Good luck for the future, I believe that it is totally possible to have an excellent outcome.
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Re: Coping with not having children

Postby midgetem » Thu Jun 04, 2015 8:54 am

Hi Carmel

I've only just seen your post. Congratulations on the baby and I hope you find some people in the medical world that will support you if you choose to go for a second.

As for me I was back at my renal clinic this morning. Blood pressure well controlled but consultant was very unsupportive about trying. He even went through a study into pregnancy and said as you will see from the conclusion 1/3 of patients need dialysis. I said I can see that but it also suggests majority don't so I could fall into that category. He just seems constantly unsupportive over the whole procedure but my husband and I have decided to go for it. If it doesn't work out thats fine but we would at least like to try! I don't think you ever regret the things you do try only what you didn't do!
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Re: Coping with not having children

Postby jelliemint » Wed Jun 10, 2015 6:06 pm

I've just found this forum and have found it really interesting. My husband and I have had a similar dilemma as I have glomerello nephritis with lots of proteinuria and the doctor is not at all happy for me to try to get pregnant. We've thought long and hard about it and decided to start trying. Yes, this might be a difficult journey but so might any pregnancy. As far as I'm aware life doesn't' come with a guarantee for anyone :)
Really good luck midgetem!
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Re: Coping with not having children

Postby midgetem » Sat Jun 13, 2015 9:08 am

Thanks Jelliemint.

that is very similar to what my husband and I thought as well. No one can really predict what will happen!

best of luck to you on your journey as well.

I have changed
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Re: Coping with not having children

Postby balib310582 » Tue Dec 15, 2015 12:55 pm

I've found this very useful, I am 13 months post-transplant now and spoke with my consultant today, he is going to take me off of MMF and put me onto a different immunosuppressant, said we could start trying 3 months after being off MMF. good to hear of others experiences! will keep you posted on our experience!
33 years old
diagnosed with Alports syndrome
started PD dialysis March 2011
joined transplant waiting list March 2011
transplant received 5 Nov 2014
From Aberdeenshire, Scotland, UK :)
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