I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: AntNZ on August 18, 2013, 02:06:15 PM
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Just wondered if anyone around here knew anything about this. If it was possible etc?
I would love to have children but as dialysis is so unpredictable with how long you can be on for, I don't want to waste my chance/s.
Has anyone on here ever spoken to their doctors about it? I'm only 23 but I want to start thinking about things now as my ovaries have been playing up since December.
Please help.
Much appreciated,
Ant :)
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Hello AntNZ, it depends on your health. There are some women who had a child while on dialysis. It’s a high risk pregnancy but it’s not impossible. Yes you are young and anything is possible according to God’s Will. If you really want to have a baby, ask your GYN if it’s possible after examining you. I’ve been on dialysis for 14 years and saw my GYN this year. He told me that I still can get pregnant but it will be a high risk. Now, I’m not looking to have a baby anymore but if the opportunity prevents itself, I will follow through with it. So see what you GYN says not your kidney doctor.
Also, there are threads in this forum where women had babies on dialysis. Maybe when you get a chance, you can read them. Don’t get discourage because everyone is different. If it’s meant to be, it will happen for you.
I wish you luck and hope your dreams come true.
Hope this helps. 8)
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Hey cdwbrooklyn,
I will deffinitely ask my GYN about it. I'm just fearful she will say no due to the fact I've had the ovary issues :( I don't want to have it all taken out unless there is no other option.
In NZ it's hard to adopt/foster children if you're on dialysis because, apparently, the risk of dying is higher (load of crap - especially if your health is well managed) therefore, I was looking at the natural way :)
Thanks for your help :)
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You're Welcome!!!!
If I'm not mistaking, I think the same rule applies in the USA. See what your options are you may be surprised. Anyhoo, I'll prayer that your dream will come true according to God's Will. I like to see happy ending.
Have a great day!
CDW :)
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Aw, thanks heaps for your encouragement. I like feeling that I can do things :)
I am deffinitely going to look into my options - especially with my own 'female health situation'. I'm 23 and SHOULDN'T have to be thinking about this, but that's okay.
I like to see happy endings too :) Next step, here I come!
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You should also talk to your nephrologist if you are considering pregnancy. S/he might be able to refer you to an ob/gyn who has experience dealing with pregnant dialysis patients. Your nephrologist should also be able to tell you what sort of risk pregnancy entails for you as well as the best way to prepare yourself before you conceive.
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Definitely consult your doctors. There was a woman posting here about her pregnancy. She had to switch from PD to hemo. I think near the end she got more frequent dialysis. If your docs say it's ok you can do it. It will be tough.
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Don't give up on your dream of being a mom! Talk to your doctors and do lots of research. I always believe where there's a will, there's a way. Have you considered having some eggs frozen for the future? Then you would still have the option of using a surrogate, if it isn't possible for you to carry a child yourself. Find out all your options and don't be discouraged! You are so young, having a baby should not be an impossibility for you. Keep us posted. Hang in there!
:cuddle;
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Hey Midges, Jeannea and Angiepkd.
Thanks for your thoughts and encouragement. I will deffinitely talk to my specialist about this :) I am aware of the lengthened dialysis sessions with no breaks but to me it would be so worth it.
Angiepkd, I have thought about the eggs thing as well. Something else to talk to the doctros about it :)
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Sorry that I came across this a few days late but I thought I would give my thoughts on the issue. I'll definitely add nothing new to this post but since I'm (kinda) a young woman dealing with ESRD, this is a hot topic.
When I got my current nephrology team, one of the first topics discussed was pregnancy. They brought it up, I didn't. I was 23 at the time; your current age. At the time, I wasn't thinking about children and I thought they were insane to have this discussion with me. Probably the party girl with the lowest kidney function out there. :rofl; Go Ibiza! :yahoo; Like the previous posters have said, it's all individual and I hope you can achieve your dream of children one day. However, in this case, I was advised pregnancy was not a good idea. It would be extremely high risk, both for the child and I, as everyone has noted. Medications that I'm on (that work beautifully) would have to switched to others that may not work as well because they are detrimental to a fetus. And then, the question of genetic testing entered the picture. Do I want to pass on conditions to my child? Even with a surrogate, my warped genetics may impact the life of a human I chose to create. I don't feel my "biological kidney clock" ticking anyways so maybe in the grand scheme, I wasn't meant to be a mother. My family really hates that though. :P This is only my case and my neph team is a bit of doom and gloom.
Nonetheless, that being said, the neph team has worked with a few young women on dialysis that have given birth. Very difficult births where one of the young women came close to passing away at delivery. As we know, dialysis is hard on all the organs, and with delivery, her blood pressure went through the roof and in turn, her heart did not react well. On the bright side, her child is healthy and doing amazing! I fully believe that if you are well managed, on the best suitable meds, keep yourself in the best condition possible and have a great team, I truly hope that you will be blessed with children one day. To reiterate what the other more-informed posters have said, definitely discuss it with your medical team. Get the cold hard truth. :)
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Hey UkranianTracksuit,
I really hope that by talking to my team they will be able to sort something out :) Unfortunately, I'm having a down day today as I spoke to a friend last night who is also on dialysis and she has been fighting Child, Youth and Family Services for years because they won't let her adopt or foster.
I don't know about the laws in other countries but in New Zealand, apparently if you're on dialysis and give birth to your own child they can't take it off you. If you try to freeze your eggs, there is a committee who try to check the ethics etc and can refuse your want to have eggs frozen.
If you try to adopt or foster, they won't let you.
And if you 'hire' a surrogate, without filling out adoption papers, it's illegal. (The surrogate is, and always will be, the childs parent - regardless of sperm and eggs).
I just feel like my dream has been shattered like a pane of glass and there is nothing I can do. I cried myself to sleep last night and I'm crying now.
I don't know what to do.
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Dialysis does not make one pregnant. When you find out what does make one pregnant, let me know.
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Hi Gerald Lively,
I know it doesn't 'make' one pregnant, but it doesn't completely stop it either. I just want to try my chances before it's too late.
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I would be concerned about living long enough to see a baby grow up if I were on dialysis or a transplant. I worry about being there for my children with a transplant. I had my children before my ESRD. My creatinine with baby #2 was 1.1, so I was very early CKD and not yet diagnosed . Just some questions come to my mind regarding having a baby while being treated for ESRD... Are you married or in a good relationship with the potential baby's father? Would you be comfortable with him and his family raising your baby if something happens to you? Do you work? If not, is your disability income enough to comfortably raise a child on? Do you want your child to be raised by a chronically ill parent? My children were 12 and 14 when I had my preemptive transplant and I now cannot physically participate in pre-transplant (kayaking, hiking, tennis, biking, downhill skiing) activities because I am just too tired much of the time. I work full-time and that certainly contributes to my tiredness, but I feel like I am short changing my children. My children have also had to witness my transplant, fight with transplant med induced TPP/HUS, multiple infections that have required hospital stays and the fatigue. Just some things to think about...
If your team thinks you are healthy enough, then by all means pursue your dream of being a parent. It's too bad about the foster care/adoption not being a viable option. It seems that here in the states, they allow anyone with a normal temperature to be a foster parent. Adoption is a different matter. I will wish you success in whatever option you choose!
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Hey Sax-O-Trix,
I have given thought to that and my answer is this; I have been with my partner for 2.5 years and I am very confident that if anything happened to me, that he would step up. My health hasn't really changed since starting dialysis. I've just become a bit more tired. I've maintained very much the same weight for almost 6 years. I don't have a job, but I am looking and hoping to work.
If I got pregnant while on benefit, they would have to change the amount I get. I don't want to live solely on benefit though. And if my partner is working, then that helps too.
If I managed to have a baby, yes it would be hard for them watching me on dialysis, or with a transplant etc, but it would become the norm for them as having a scar and taking medications was for me before dialysis.
I'm very confident in both mine, and my partners, family that they will be able to help out if/where needed.
I have always wanted to be a mum, since I was 15. To suddenly have that rug taken from under your feet sucks and I'm going to try my hardest to make it work.
Maybe I should live in the States if it's so easy? Lol :P
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It sounds like you have it all figured out. That's great! :2thumbsup;
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I think making sure you have a good support system is important. I do agree they probably won't be upset by your dialysis since it will be their normal. With my nieces, they got used to my meds and to being told to wash your hands all the time. You could be perfectly healthy as a mother and be diagnosed with MS a year later. There are no guarantees that parents will always be healthy. I think if you truly want to be a mom you should find out all you can about your options.
Personally I never thought I'd have kids so I didn't have this dilemma.
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Hey Sax-O-Trix,
I have deffinitely thought about everything as when I first started really discussing it with my family, those were the questions that came at me :) I don't expect it to be easy, at all. I just want to try and I'm going to keep fighting until the battle is over. That's my mindset right now.
Hey jeannea,
I totally agree with the support system thing. My partner did ask me how would we manage and I said, well, we have family that I'm sure would be there if we need them to be :) I'm sure we will need help at some stage (us dialysis patients just can't seem to stay out of hospital lol) and I will be so greatful, but until then, I plan to give it my complete best shot.
I agree about healthy parents as well. Everything you've said rings true to me. I just wish CYFS (Child, Youth and Family Services) would see it that way. Nevermind, we'll get there.
I'm not sure I will be ABLE to have my own, but I want to try. And I want to figure out what I can do to make my dream come true. I'm not giving up :)
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I was not quite sure whether or not I should tell you about this,
but my kidneys first failed in 1971, when I was just over 17 years of age
when I was brought to hospital in a coma with uraemia and complete kidney failure...
... fortunately my kidneys “recovered” to a ~ 40 % function again which I could keep
with my strict vegetarian diet until August 2006, when again I was told I am in end-stage kidney failure...
... fortunately, thanks to an even more refined veggie-diet, my “two little fighters” are still going
with a 10-12% kidney function and without any dialysis...and I keep myself as fit as I can manage
with my constant minimum weight (!!!) and an extremely health life-style...and as many walks as possible...
... this as an introduction to where I am coming from and what I am going to say in all honesty:
In 1971 I consulted with a very clever medical professor (a well known respected European heart surgeon)
whose “hobby” was preventative medicine. I was referred to him because no other doctor could possibly help me...to avoid dialysis...
... this professor told me that he would “go vegetarian” in order to keep his kidneys functioning
if he were in my situation i.e. my desperate plight to avoid dialysis under any circumstances...
He also told me in no uncertain terms, that a pregnancy would definitely be too risky for me...and the baby...
... and therefore out of the question...if I was thinking in a responsible way forward...because...
most important of all: he told me that a pregnancy for kidney damaged-females (like myself) ...
would seriously endanger the health of a baby: many of the children of kidney-damaged mothers end up
having a miserable life with brain-damage (some more, some less, some sooner, some later), serious heart troubles
other organ-troubles and a life of constant sickness/disease/vulnerabilities of all sorts....sooner or later in their life...
This professor also informed me that many kidney-damaged females do not wish to acknowledge this fact
because “nature may take over” and because of this they may become selfish to make sure and “have their very own baby”...
– a very understandable desire – but very cruel to the innocent child in such circumstances...
adding to that, the child might not even forgive the parents for the suffering and isolation they may go through...
...sooner or later in their life...
I am only repeating what this professor informed me of, because I never ever forgot his kind-hearted and humanitarian advise...
... and it became very clear to me that I – honestly - never would be able to forgive myself or live with myself...
if I would have given birth to a disabled child, being fully aware of all these risks...
... I love children too much, in fact I adore them and I just could not do this ....and ignore such facts...
... and because of these facts I have started very early in my life to come to terms and accept this fact as my reality...
... as you can see, I had a hard enough job to survive with my damaged kidneys and little kidney function as far as that...
and I certainly could not have taken on added problems...and added heart-break...
... I do hope you, your partner and your family think this matter over in a very logical and realistic way...
... it could be very cruel to the child if you try to ignore such realistic facts of life...
... you may find some more honest information about his hardly ever talked-about, perhaps even heart-breaking - TABU
on the Internet...
Good luck with your decision, whatever you decide, you have to live with it
and I am fully aware that whatever you decide may be hard, very hard, whatever way...
Best wishes from Kristina.
P.S. Honesty from the start may be a better foundation than a life-long (often hidden) regret with hindsight...
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you had this consultation in 1971?? It probably was pretty dangerous to have a baby with ESRD 40 years ago!! but medicine has greatly advanced since then. I think there are a few posters on this site who have had successful pregnancies. so I kind of feel like your doctor's advice is a bit draconian-no offense.
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Justme, I agreed with you. Also, there are others ways of doing dialysis beside in-center. 40 years ago,most of the machines we have now were not available. So I strongly believe she has a fair chance. Also, you don't have to be on dialysis to have something wrong with your baby. It's all depends on you and your partner's genes. I've read and heard people having healthy babies while doing dailysis at home and some in-center.
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Hi all,
Kristina, I really think that I should be able to have a good shot. 'Normal' people can produce disabled babies and they have no idea of that - it's just luck of the draw. I thank you for your advice, but I agree with justme and cdwbrooklyn. I have read a lot of articles that say it's not impossible but you have to be vigilant with dialysis etc. I'm still going to talk to my specialists and see what they say before I come up with a decision. :)
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Good Afternoon All,
Just to add to this conversation I need help........I have been on dialysis for 18 years (I am 33). I can't have kids due to overy issues. My husband and I have wanted to adopt and have been fighting Child, Youth and Family in NZ for years. However I keep getting told I cannot adopt as I am too high risk of passing away as I have been on dialysis too long.
I am actually very healthy, work full time, volunteer with Radio Lollipop and have done high needs foster care in the past.
I am now mounting a case with our Human Right Commission to try and get the decision turned around but I need to know if anybody in my boat has been able to adopt with the female on long term dialysis with a healthy husband. This is to help me build a case to say to the department it is possible to do.
Thanks in advance for the help
Karla
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My apologies Karla for going through this dilemma. That’s awful to tell someone that he or she will die soon because he or she has been on dialysis too long. Who give someone the right to say those things to someone else? I cannot understand why people act the way they do went you tell them you dialyzing. What about the child? Isn’t this about the child receiving a good home and love? You don’t have to be on dialysis to die suddenly. You can be normal and healthy and something strikes you and makes you sick where it can lead to death. No one knows when and how someone is going to die. Why try and predict someone’s death? This is what pisses me off. People and their ignorance. I’m so sorry I don’t know what to do regarding this issue but I hope the court overturns this decision. ???
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Hi cdwbrooklyn
Its very hard. There is not a big understanding of dialysis and it seems to scare people.
We will keep trying though.
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Hey cdwbrooklyn,
NZ is pretty stuffed in that way. Karla has been trying for years to get their train of thought and I'm a newbie in all this but at the end of the day, it's my situation also. I fully support Karla in her endeavor.
And it's as Karla says, there is no understanding and there is only ignorance. Especially when you have a famous Rugby player who is now on dialysis saying how awful it is :stressed; That annoys me. People see his story and think it's the same for everyone. I know SOME situations are bad, but he doesn't acknowledge that it's not that bad for many more people.
Employers only see what he says. They only know what he says. Then they meet people like Karla and I and it confuses them even more because we don't look 'sick'. To people who don't understand: Dialysis = sick.
Of course, I'm not telling you anything you don't already know :)
CYFS have the same sort of thought as the general public. Dialysis is a bad thing. But they need to see that our choice to do dialysis is our choice to live. We're not unstable emotionally (unless we have bad days), and we are WANTING to live. Just wish they would see that dialysis is keeping us alive, not killing us.
Argh :(
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I agree with you. Hang in there, what is meant to be will be. :thumbup;
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Thanks cdwbrooklyn :)
Sorry I haven't been 'active' on here in a few weeks. Been trying to get a job - which is difficult! I've also tried to arrange a meeting with my specialist but that's slow in coming too. GRR!
Fingers crossed, eh! :)