Frustrated-- with people and kids.

[Rain]

This is a rant..  I have been on dialysis for 5 year and even though I have accomplished a lot my life isn't where  I wanted it to be pre-D.   All my friends are starting families and it's hurts every time someone posts an announcement of facebook, via email or just running in to them that surprise they are pregnant and expecting a baby..  Don't get me wrong I am happy for them, but I get upset over my own medical state.  I pretty much excepted that i will never be able to have a child of my own.  Due to being on dialysis and post transplant it could potentially cause damage to t the transplant and a higher antibodies should I ever need a second transplant. 

I looked into getting a surrogate but the canadian rules are different and i need to undergo hormone therapy before hand to harvest the eggs, but the hormones are water soluble which means dialysis will just wash them out.  I halso have no friend who is willing to carry for me and in canada the person who has the baby is the biological mother and they have the right to keep the baby..  arg... 

Adoption is the other option I am considering, but then again I think do I want to bring a child into this situation.   My mother was sick my whole life, so we never had that mother daughter relationship that most do.  During my Prom my mother was in the hospital and too sick to do anything, I ended up picking up my dress myself, getting my hair and make up done myself.  We never shared any of those moments together.   During important moments in my life my mother was missing due to illness.  I don't have any other illness due to  dialysis but  i just worry. 

My boyfirend knows we can't have our own childen and  i feel like he could do better.  He is an only child as well and I believe he should have a child of his own.  I told him numerous times to leave and start a new life without me because he deserves better.  But he won't listen and keeps saying we don't know what the future holds.    We have been together since before D almost 8 years. 

I guess i am just frustrated sorry for the rant.  I have a few close friends that are still single so I think I will be spending some time with them more often.  i guess I feel this way cause I am turning 29this week and i always thought i would have a baby by now.

[monrein]

Rain, I feel compelled to reply because your situation mirrors mine in so many ways.  I started D at 26 due to kidney issues since I was a baby and had my first  trx at 31.  I was living with my husband at 17.  I had always thought I'd have kids, my husband is an only child and I felt we would have made good parents.  My sister offered to be my surrogate since at that time no one had gone through a pregnancy on cyclosporine and also I feared the risk to my trx.  I too live in Canada.
I looked into the whole egg harvesting, decided against it for a variety of reasons and my husband was not particularly keen on adoption.  We both worried about the kind of life a child might have if I experienced more illness and also about leaving my husband as a single parent if I died.  In the end we came to the conclusion that our job was to accept that we would not be parents but that we  could include many children in our lives and that's what's happened.  Of course it's not the same.  Of course we feel a little bit cheated...but only a little bit and that's not where we dwell.  We've been delighted over the years with every new baby we come across...in fact we're meeting another one tomorrow night, the son of a kid we've been close with since she was about 5 . People seem to love including us in their joy and we are genuinely delighted to be included this way.  One little boy used to refer to me as "the other mummy" for a while.  There are never any real substitutes as such but I personally think that in every life it's most productive to focus on the advantages of one's situation rather than the disadvantages and so we've tried to focus on the increased freedom we had when our friends were tied up with young kids, we've been grateful for not having to struggle through the adolescent issues some have had to face and so on. We would have chosen differently if we could have but on balance we're at peace with things and the fact is that we have young people who visit and stay with us, who enjoy spending time with us and in whom we take great delight.  My mother-in-law, who was an only child herself, passed away recently at 92 and there were many children at her funeral with lovely memories of her and they all called her Grandma Lyla without a single drop of biological blood shared. 
Your boyfriend will have to choose the life he wants, he (and my husband had it too) has that luxury but try not to push him away too hard over this issue.  I truly believe that a successful, rewarding life has more to do with obstacles overcome and delight in the present wherever one can manage it than it does with having all the "right" things in the right order.
I hope you can navigate this painful time of biological clock ticking and never apologize for ranting here or for talking about how you feel.  It's the only way to think our way through things.  Perhaps adoption will be the route you choose, perhaps your boyfriend is right...you never know what the future holds.
P.S.  I'm on my 2nd trx now, coming up on 4 years in February and had a 0% PRA after a first trx that lasted 23 years.
 

[amanda100wilson]

I had a choice as do you.  I had a transplant, knew the risks and decided to have a child and did with the help of IVF.  I am so glad that I did.  I now have a very high antibody level, which I may have had anyway because of the previous transplant.   I am not really sure why you focus on the negative aspects of your relationship with your mum.  Rather than dwell on the negative why not consider the positives.  any child you had could do the same.  I do not feel that I am failing my son because of my illness.  sure he wishes his mom weren't ill, but no-one's life is perfect and no-one knows what is around the corner.

if being a mom is as important to you as it sounds as if it is, I would just go for it when the time is right.

[Lillupie]

Ages, I really wish people would post ages in their profiles....

I never knew you were my age. I am too 29. Sometimes I get down because I do want kids with my husband. Like, Your  boyfriend, my husband says the same thing. On that note, I was told by the neph in transplant, id have to wait atleast a year. I do know of a few people on Facebook, one I met in real life, who did have atleast one child after a transplant. But you will be on the immunosuppresants(sp?) Getting a transplant will raise your antibodies too.
 Your other option is, it is rare, to get pregnant on dialysis, and be stuck doing hemo on a daily basis.
talk to your doctor and ask him.

Lisa

[Rain]

I actually started to feel better after I posted just because I know others feel the same way and it's nice to talk about it and get it off my mind, since it's been chugging in the back of my mind, every time one of my friends announces they are having a baby. 

My boyfriend and I agreed we will wait until post transplant and see what the drs. say before we go ahead with anything.  But i already have high antibodies that are making it a bit difficult for a match right now.
I am  heavily into athletics right now, (running, biking, swimming) that I have a couple of runs I plan on traveling to out of town for next year.  And I am training right now for my first Try Tri which is a mini Triathlon.  I do enjoy my freedom and i know with a child I won't be able to do that.   
Monrein, your right i just need to focus on the positive in my life right now.

Amanda100wilson-   I don't mean to focus on the negative in the relationship with my mother, but I believe I have already lost my mother over a year go since that has been when her condition started deteriorating. Because of her diabetes she is suffering memory lost, she had stroke, lost both legs, lost her vision, on dialysis and has lung damage and requires oxygen.  We also believe she has cancer because they found a growth but she refuses to get it checked and it has increased in size since they discovered it.  She is right now in long term care because my dad can't take care of her.  She is only 57.  I think I have seen what the disease has done to her that i don't want to put anyone throught that.  I still do love my mother but the relationship is now different because of the disease and what it has done to her memory.  I still  call her weekly and chat for as long as she can handle it which is now only about 5 mins.

And Lisa I agree they should have ages on everyone's profile.

[Lillupie]

Here is a link I found for you. It talks about having a baby after a transplant.

http://www.aakp.org/aakp-library/Pregnancy-ESRD-Transplant-Patients/

[Lillupie]

And Lisa I agree they should have ages on everyone's profile.

Lol you dont have your age on your profile. To look at a profile, you just click on the person's name. Yours says you're from Canada.

[MooseMom]

These sorts of discussions more often than not seem to leave out one important consideration, and that is what maternal renal disease might do to a developing baby.

Would you want to risk a stillbirth or a live birth to a premature baby who may very well have a short life of dreadful suffering?

I developed pre-eclampsia during the late stages of my one and only pregnancy and was hospitalized for a total of 6 weeks.  I didn't know I had CKD at the time.  Six months after the birth, I was diagnosed with fsgs.

A year later, it became apparent that my beyond beautiful little boy had a developmental disorder.  He was later diagnosed with high-functioning autism.

Did my undiagnosed fsgs/diminished renal function cause my boy to be autistic?  I don't know, but I suspect so.  Did I somehow condemn my only child to a lifetime of disability?  I can't escape that notion because no one can tell me for sure one way or another.

I am very sorry that you are in this predicament.  Just remember that there is a baby to consider.

[monrein]

These sorts of discussions more often than not seem to leave out one important consideration, and that is what maternal renal disease might do to a developing baby.

Would you want to risk a stillbirth or a live birth to a premature baby who may very well have a short life of dreadful suffering?

I developed pre-eclampsia during the late stages of my one and only pregnancy and was hospitalized for a total of 6 weeks.  I didn't know I had CKD at the time.  Six months after the birth, I was diagnosed with fsgs.

A year later, it became apparent that my beyond beautiful little boy had a developmental disorder.  He was later diagnosed with high-functioning autism.

Did my undiagnosed fsgs/diminished renal function cause my boy to be autistic?  I don't know, but I suspect so.  Did I somehow condemn my only child to a lifetime of disability?  I can't escape that notion because no one can tell me for sure one way or another.

I am very sorry that you are in this predicament.  Just remember that there is a baby to consider.

MM, as is so often the case, I agree wholeheartedly with you.  I failed in my post to make clear that overriding all of our thoughts and discussions about having a child was the health and welfare of said child...from conception to adulthood.  We felt strongly that our need to be parents was and ought to be secondary to that and we never felt secure enough about what we could offer.  Nothing in life is ever certain but some situations start off much murkier than others for sure.

[justme15]

Rain-
your story is exactly mine word.for. word.  I think I need to log off facebook, because every time I turn around another of my friends are pregnant.  It is very hard for me to accept that I won't be able to safely have a child.  So, I'm trying to find other things/hobbies in life to put my energy into, that will hopefully fill the void.
and I will be 36 in a few weeks.  so my eggs are drying out.

[MooseMom]

MM, as is so often the case, I agree wholeheartedly with you.  I failed in my post to make clear that overriding all of our thoughts and discussions about having a child was the health and welfare of said child...from conception to adulthood.  We felt strongly that our need to be parents was and ought to be secondary to that and we never felt secure enough about what we could offer.  Nothing in life is ever certain but some situations start off much murkier than others for sure.

But what your post DID make VERY clear was that you do not have to be a parent in order to have a lot to offer to a child.  I don't think that any parent can be, nor SHOULD be, the only source of love and wisdom and guidance.  It is important to have as many caring adults as possible surround a kid with these things.  I have heard your stories about your niece's annual visits to your home; she is so lucky to have you in her life. 

It must have been a hard decision for you to make all those years ago.  If I had known about my kidney disease earlier, I don't know if I would have allowed myself to get pregnant.  My then-husband has a brother with Prader-Willi Syndrome which is caused by a specific gene that has been damaged, and I know that my then-husband felt guilty that maybe he had passed something on to our son.  I know this is not the case, but I know the suspicion haunted him.  And although I will never know for sure, there is certainly the possibility (at least in my mind) that my fsgs caused my son's autism or that maybe my pregnancy triggered my fsgs.  It's a bit tragic all around, but there you go. 

My point is that there is more to consider than just the desire to have a baby.  I love my son dearly; he is the most courageous person I know, but I cannot say that he has brought me joy.  I worry about him growing old, alone and disabled.  All because of my crap kidneys.  All because I didn't KNOW I had crap kidneys...

[jbeany]

From the point of view of someone who lost her mother to a long illness long before she was old...I wouldn't give up a minute.  Love for any length of time is a good thing.

From the point of view of someone who knew that having children was likely never going to be an option...well, I've come to accept that, maybe cause I've had so long to realize it.  I frequently look at my friends who are now dealing with the terrible teens, and it's not so bad to be childless.  The "everyone I know is having a baby" stage was much harder, but at some point, I've become the one they dump their kids on when they can't stand them anymore.  Being the spare aunt is, as monrein points out, a fabulous thing. 

I, too, made the choice not to risk a pregnancy with my health issues.  I didn't think it was fair to the child. The odds were high that any child who survived to term would have a tremendous chance of multiple health problems of their own, not to mention dealing with mine, if I managed to survive the pregnancy.  (My gyno actually told me he would immediately refuse to be my doc anymore if I decided to have a child.  He promised to see if he could get me in with a high-risk specialist who would be willing to work to save the life of the child as first priority over the mother's life, but he doubted anyone else beside that one (fundamentalist Catholic) doc would take me in the entire area.)

From someone who is now divorced from a husband who decided mid-marriage that he wanted a healthy wife with kids....well, that one is harder.  It was hard to hear him say he had changed his mind and wanted out.  But, a cheater is a cheater, and it's got nothing to do with wanting kids in the end.  I also know through the grapevine that he's not so thrilled with having to raise his step kids now that he's got them, and that he whines all the time about it.

[MooseMom]

  to you, jbeany.   

[cdwbrooklyn]

I must agree with most people above as I have had the same feelings.  However, I do have a daughter who’s grown now.  She doesn’t have any kids yet because she to busy making a lot of money.  Anyhoo, my nurse told me that she knows of an Nxstage patient that had a healthy baby on Nxstage and was trying for her second one.  Also, she told me if I get pregnant, she will help me through it.  I would love to have a son one day but like most above, it may not happen because of D.  However, if I do get pregnant, I will definitely go through with it.  If the baby survives, he or she will be very spoiled healthy or not.  He or she would be my second sunshine as my grown daughter is my first.  But, if the baby doesn’t survive, I can least say I’ve tried.  I’m not afraid of the outcome.  My heart is big and I will love and accept my baby no matter how he or she comes out.   Anyhoo, I don’t think about it anymore and some days, I’m glad I just have one child who’s grown.   

[cariad]

Oh, Rain, hun, the children issue is so tough and so potentially heartbreaking.

Please don't write off having kids. I always thought I never wanted any and then I met my husband and changed my mind. Both my kids were post-transplant. Very post-transplant. One of my new, fast friends here (UK) has never had ESRD and told me a horror story of nearly dying after having her second child. She developed pre-eclampsia post-partum which is so bizarre that aparently there was an episode of House that featured a similar scenario.Things can always go wrong, no guarantees and all that, but sometimes they go surprisingly right. I sometimes feel guilty for having kids, not because of health but because the world is such a mess and we'll probably wind up blowing ourselves up or rendering the planet uninhabitable. My kids have had loads of stress in their lives and a breathtakingly flawed mother but we haveso much joy all the same. That being said, I like to think that if kids had not been upon the cards for us that we would have been just as happy going in that direction. Hugs to you!

[MommyChick]

Hello Rain,
You seem like a very active person with your life, which is a good thing & if you along with your doctors & OBGYN work together it can be possible! So please don't write off having kids like Cariad says!
Yes, I had my son when doctors didn't want me to & yes it wasn't planned but I have a beautiful, healthy little boy who will be 2 yrs old in a week. I wouldnt trade anything I had to go through while being pregnant with him. It was worth doing dialysis everyday!!! Nothing in life is ever easy, but please don't limit yourself!
If you want to chat more about it you can always msg me.
Good Luck Rain!

[smcd23]

I agree with the others - don't write anything off just yet.

I donated in 9/08 and found myself pregnant in 1/09. Not ideal. And my pregnancy wasn't without complications as my lone kidney was still adjusting to flying solo, and then I threw pregnancy on top of it. Just over a year from the donation and tx, we had our little boy. And he keeps his daddy going every day, and I kick myself for thinking of having an abortion when I found out for fear for my health and for my son. Thankfully, we were both fine but I do think all things happen for a reason. Who knows what the future holds for you? Maybe this is part of some plan the universe has for you.

   I do know how you feel to a degree. A lot of my friends who had kids around the same time as me are having #2 and #3 and it makes me really sad/upset. I wish more than anything I could join them, but hubby doesn't want to given his condition and I haven't had a thorough physical in awhile and I am scared to find out how my lone kidney is doing. But again, don't write anything off just yet. You never know what will happen!

[Rain]

Thanks everyone.   
I am going to wait for now, and just enjoy life.  Once I get a transplant I will listen to what the drs say. 

What does worry me is I was born to a mother who was sick with diabetes. Due to having high toxicity levels in the blood I was born 3 months early.  I spent my first 2 months in the hospital and then returned when I was 2-3 due to a host of other problems.  I had 3 major surgeries as a child to fix issues.   my parents never treated me like I was sick and taught me to be independent and told me about my health condition early on so I understood why I had to take medication etc.  Today if you look at me you would never know I had anything wrong with me.  MY parents were told I wouldn't walk, and they wouldn't take that answer so they got a nurse in to help with my exercises and other stuff. 
 I guess I am also worried that I don't want my child to experience a life in hospital.

[lainiepop]

Rain i completely understand your concerns but if you do decide to have  a child there's no reason he or she will have health issues. I too have known hospitals all my life, born 4 wks early with just one imperfect kidney and no bladder, i too had surgeries as  a child and our parents attitudes sound identical lol.
I was lucky enough to have 2 children before the kidney failed and just recently before my tx they both had ultrasounds to check their kidneys etc and they are both perfectly normal and healthy. I was monitored closely during the pregnancies, drugs were changed before conception and i had to take a high dose of folic acid 3mths before and during trying to conceive to lower risk of birth detect. lwent to 39 wks With my son, but needed  a section at 35 wks with my daughter, she was fine and came out of hospital at a week old even tho she only weighed 3lbs9 . Apart from the kidney my pregnancies were both straight forward and trouble free except for Mild pre eclampsia after my sons birth.
Totally agree with you bout talking to docs, they're experienced in this and have handled it many times!
Take care X

[amanda100wilson]

my son, born during the time that I had a functioning transplant, was delivered at 38 weeks because of a fear that I was developing pre-eclampsia.  he weighed a very healthy 6lb 10 ounces.  I had my treatment to conceive in the U K.  I must admit that I really wasn't counseled about the possible risks relating to the high possibility of .having a per-term baby.  it was only when we moved to the US that this was all laid out before me.  in fact, my high risk Ob-Gyn later told me that he didn't expect me to get to 30 weeks.

JBeany, I am shocked at the way that your doctor treated you, since it sounds as if he influenced your decision.  it is absolute bunkum.  there are plenty of high risk OB-Gyns out there who would take on the management of issues related to a high-risk pregnancy.

the way that I look at it, nothing in life is certain for anyone.  at the age of 49, I have outlived many people who have either died of acute illnesses or been killed in accidents.  I have a husband who will be there for our son for as long as he is breathing (my husband, that is).  we have also had a will and power of attorney set up, in the event that something should happen to us.  we thought long and hard about it.  our first choice, my husbands's  best friend , was tragically killed in a diving accident.  eventually, we settled on my husband's second cousin  as they have similar values to us.

I may be physically ill, but I was brought up by a mother who is mentally ill.  what I guess I am trying to say to the I.P. is that you shouldn't discount the possibility of having a child at this stage.  my son brings joy to our life every day and he is very accepting of my illness and limitations.  I have no regrets.

[Riki]

I know how you feel, Rain.. I'm 34, and I don't think I'll ever be healthy enough to have children.  I also think that I've started going though menopause early, which I have family history of.  What bothers me most about it is that neither me or my brother are likely to have children of our own, which means my parents won't be grandparents.  I know that my mom sees her younger sister playing with her new grandson, and wishes she could have one too

[jbeany]

JBeany, I am shocked at the way that your doctor treated you, since it sounds as if he influenced your decision.  it is absolute bunkum.  there are plenty of high risk OB-Gyns out there who would take on the management of issues related to a high-risk pregnancy.

There really weren't That doc wasn't the only one I saw, and not the only one to tell me the same thing, if not quite so bluntly.   I lived in a very rural area, so doctors in general were in short supply, let alone specialists willing to take on high risk OB patients.  By the time I started dialysis years later, there were a total of two nephs covering ESRD patients for a multiple county area that would have taken nearly 6 hours to drive across.  The one I had spent a huge portion of his time just traveling.  He covered every available treatment center from the Canadian border to an hour south of the Mackinaw Bridge.  It is, unfortunately, a common problem in Northern Michigan.

[rsudock]

sometimes i go to www.scarymommy.com  the things moms put on the confession board make me laugh and cringe...just reminds me that there are happy and sad people, with and without children....

hang in there!

xo,
R

[Poppylicious]

My situation is slightly different to yours because I'm not the one with CKD, my blokey is.  However, I am running out of time (age-wise, I'm the wrong side of 35) to have a baby with fewer complications.  There is a HUGE part of me that wishes I'd done my utmost to sneakily get pregnant in previous relationships and earlier in this one (we've been together for ten and a half years) but I can't change the past, and I don't believe I can change the future.  IF I am blessed with a baby then I will be ecstatic, and if not ... well, life will continue, I have some amazing nephews and nieces and we'll have more money to spend on our old age together *grin*.  I console myself with the fact that I DID give life in some small way (with the donation) and that children are NOT the be all and end all and that in my chosen profession I DO enrich and reward the lives of many young people.  And I'd make a pretty neurotic and rubbish mummy anyway.

Oddly, it's only in the past couple of years that I've reached the 'all my friends are having babies' stage ... many of my friends didn't start families until their mid-thirties, so there was no pressure or rush in that respect either. 

The only thing which really bugs me about the situation is my MiL continuously bringing up the fact that she wants grandchildren.  I wish she'd shut up.

 

*huggles*

[Whamo]

    Don't beat yourself up.  Give yourself a break.