Wondering about Becky Boo

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christin
Posts: 4
Joined: Mon Oct 25, 2004 7:51 pm

Wondering about Becky Boo

Post by christin »

Hi, all,
I´m new to this bulletin board. I´m not a patient myself, but someone who I really care about was recently dx with chronic disease. She has 27% function and was on fertility treatment. I came here to know more about life with a kidney disease and maybe help her and her family to cope with the news (which was VERY unexpected, no symptoms at all).
Her first doc ruled out the possibility of her being pregnant, but her second one gave her some hope. That´s why I was so interested on Becky Boo´s post. I´d love to see a successful story to tell her about later. Are you somewhere here, Becky? I hope everything is alright.
Good luck to everybody
LadySycamore
Posts: 73
Joined: Tue May 18, 2004 9:48 pm
Location: Philadelphia, PA USA

coping

Post by LadySycamore »

Hello christin. :D

Here are some links that may be of some help to becky boo, yourself and her family. Good luck:

MENTAL AND EMOTIONAL HEALTH:
http://dialyze.org/forums/viewforum.php ... d6b327aa33
Dialyze.org:
http://dialyze.org/forums/index.php
Chatroom, Support, Advocacy and more!

Dialyze.org MemberGroup on MSN:
http://groups.msn.com/Dialyze-orgMember ... sages.msnw
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

pregnancy

Post by amanda in CA »

Hi, your friend is lucky to have a friend who is so motivated to help her. Have they given any time frame for dialysis? When I was diagnosed I had 25% function which didn't last as long as predicted. I was on dialysis for 18 months before receiving a transplant. I hoped to start a family but nothing happened and the years passed. Eventually I started looking again into infertility treatments and got a referral to an infertility clinic. I underwent a one-off go with IVF (invitro-fertilisation) and became pregnant. I was monitored really carefully throughout the pregnancy, with one or two problems with blood pressure control. At 38 weeks, I was induced and gave birth to a healthy baby boy. Blake is now nearly 4 years old and doing fine. Unfortunately, my kidney gave up on me nearly two years ago and I am now back on dialysis. I had toxicicty damage from the immuno-suppression and I am pretty sure that the high doses that I was on during pregnancy contributed to that. However, I was well aware of the risks, which I was prepared to take nonetheless, particularly as it was obvious beforehand that the days for my kidney were limited anyway. I still don't regret anything. I think that it is possible to carry a child whilst on dialysis (I have heard of one or two success stories) but the odds against a successful pregnancy are high. Unless your friend's age is against her with the pregnancy thing, the general advice from a nephrologist would be, I think , that it would be better for her to put pregnancy on hold until she has received a transplant. It is not uncommon for a transplanted woman to have a baby. If you want any further information please don't hesitate to contact me. Amanda
christin
Posts: 4
Joined: Mon Oct 25, 2004 7:51 pm

Post by christin »

Amanda,
Thank you so much for your answer, and congrats on your little boy! I hope you´re out of dyalisis soon (any new kidney in sight?).
As for my friend, as her dx is recent, the doc has no idea about the progression of her condition. He wants to monitor her for at least 1 year before she tries anything. She is only 30, but the sad thing is that she went through a videolaparoscopy for endometriosis related to infertility right before being dx (and took a lot of medicines she shouldn´t have taken), because her infertility doc didn´t pay attention to her pre-op tests. You know, for a recently diagnosed girl and family who are still in denial, the words dyalisis and transplant sound like the end of the world. It´s hard to cope in the beginning, isn´t it? I hope she ends up with a story as succesful as yours.
Thanks again
beckyboo
Posts: 8
Joined: Sun Oct 17, 2004 9:03 am
Location: York

Post by beckyboo »

Hi All,

Been off the internet for ages - it's been busy around here.
Well, I just wanted to inform you all about the progress of my pregnancy, kidneys etc...

After finding out, we were pretty shocked and were immediately marched to the specialist obstiatritian as to acertain whether I should keep this baby or not. Apparently, my creatitine levels were borderline (about 165) so it was really up to me. My kidney doctor was worried but mildly optimistic.

Anyway to cut a long story, I am now nearly 3 months gone and would you beleive it (apart from evil pregnancy symptoms) my kidney pain has all but disappeared - it's just crazy. I woke up and it had gone! I had a blood test and my creatitine levels have actually lowered to 130!!

My doctors was encouraged and I think he thought there was a mistake - but there wasn't.

Anyway, I have been told the estrogen has relaxed my muscles around my kidneys and that they have been forced to work harder, making them more effeciant. My kidneys may just start hurting again and my creatitine levels shoot up again after the pregnancy, but I don't mind - as long as I have a healthy child out if it, I will be the happiest woman in the world.

I am still carrying a risk of pre-eclampsia, premature birth and a very low birth weight along with a complicated caezarian and a poor placenta worries but I am positive.

I had a scan yesterday and It now actually looks like a baby! Reality is starting to set in!

Anyway, I will keep you posted on how things go.

Feel free to email me anytime with any questions: [email protected]

Amanda, It was lovely to hear about your little boy - how did you cope with dialysis and a child?

Becky x
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

pregnancy

Post by amanda in CA »

Hi, Becky Boo, when I was pregnant my creatinine fell too, I think that it's due to the dilution affect of increased blood volume. You will need to watch your haemoglobin carefully. Both myself and a friend of mine (also a transplant patient) required EPO injections to reduce anaemia. Are you been seen at a high risk pregnancy clinic? If not, then it is important for you to do so as the medical staff at these are more experienced in difficult pregnancies that a regular obstetrician. I would try not to worry too much about foetal growth, that will be watched very carefully and you will end up with a photo album of ultrasound pictures to the point that towards the end of the pregnancy when the baby no longer fits on a scan, it gets boring! However, they do this so that they can measure the size of the baby to ensure that it is growing properly. If there is considered to be a problem they will aim to delivering for as long as possible to give your baby the best chance.

As to your question about dialysis; yes, it is tough being on dialysis and having a young child. However, I am getting much better dialysis than I did last time I did it, and as a consequence, feel pretty good most of the time. Blake is now 4 and I have explained to him that I do dialysis because 'mummy can't make wee wee properly'. As he gets older, I will obviously explain more. I feel a little sad that he will have to face ill-health issues at a young age, but I am hoping that the up-side will be that he will grow up to be a sensitive and caring young man. It can be tough some days and I have on occasion, questioned the wisdom of having a baby with a chronic illness. Saying that, I have never felt so fulfilled in my life before and I love him to bits. Best wishes, and do keep me posted, amanda
christin
Posts: 4
Joined: Mon Oct 25, 2004 7:51 pm

Post by christin »

Becky, how nice to hear from you! I´m so glad things are good to you. It must be pretty shocking to learn you are pg just after being diagnosed. I hope everything goes smoothly with your pregnancy. If you don´t mind to keep us posted...
I would really love to put you and amanda in contact with my friend, but I´m not sure how to do it, I am afraid of seeming too intrusive, you know. Maybe the timing is not right, I don´t know. I will wait a bit. She seems fine with waiting one more year to find out which would be her next steps.
Thanks a lot and Good Luck!!
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