Parents with Critical or Chronic Illnesses - Question for you

ddvj79 · October 2014

Hi Folks,

This might be a super weird question for this group but I had to ask in case there were others like us on here who have done this!

My husband is a Kidney patient (was diagnosed when he was 25) and may have to start dialysis soon, he has had his PD access surgery already. The dialysis is a 12 hour commitment per day to keep the patient alive until they get a Kidney transplant that is successful. We have been trying for a while & we have embryos from just finishing our first IVF ER cycle.

We obviously want to be parents but we wanted to ask others who are in a similar situation:

if its realistically manageable to be parents ?
Be fair to the child ?

How do you do it & keep your full time job to support your family's?

Thanks very much for reading!

Bythebeach09 · October 2014

I can speak to developing a serious chronic medical condition AFTER having kids. DH is ill with a serious condition after having a triple bypass at 38 (after we had 2 kids). It's been extremely difficult. He can no longer work and is declared by the state as disabled. He and my children receive monthly benefits from social security. It's not nearly enough. Since he isn't physically able to care for the kids alone for extended hours, I can't work (we have no family, friends, and can't afford child are). We struggle and we've had to go on food stamps to help. Prior to him getting sick we were both working and were very comfortable. Thankfully we own our home and have always had equity in any home we've owned. We've had to use that equity to survive. We also had to downsize our home and move to a lower income area to be able to stay above water. It's not been an easy road. I can't say how I would feel if this had happened prior to having kids. I might think of not having them, because we can't do all the things I'd love to do and planned to do. However, the kids are just fine and they don't know another life.

I have to add that my personal experience of both the illness and the resulting difficulties we've faced with children, finances, etc, have severely affected our marriage and strained it pretty bad. We also have other underlying issues, but the added stress of the children, etc play a role, too.

ddvj79 · October 2014

HilarityEnsued, 12 hours every day! Your kidney works 24/7 all the time so when one has no kidney function & is in failure they need the toxins cleaned out of their blood artificially. There is another kind of dialysis called Hemo dialysis which you can do at a center where need to go 4 times a week & the other 3 days the toxins build up in the body & the quality of life on it is very low.

Bythebeach09 for replying. I'm so sorry you are going through this. It is really hard to go through something like this and you are right it does have an effect on everything

We don't own our house & we have 2 dogs plus I do have to keep my job to support us if things get even worse. Neither of our families are particularly helpful or dependable...in fact his parents visit is what got his numbers to go even lower thanks to the drama they bring with them, even after pleading with them not to stress him out. Not having a good support system is so hard in these situations

Just breaks my heart that I may have to be the realistic one in the relationship & say no to my husband about having a baby that we so badly want.

ddvj79 · October 2014

HilarityEnsued - Thanks! I agree it will be very much like being a single parent, so that's a huge deterrent for me, also dialysis patients can end up with multiple hospitalizations & while I think I am strong, I'm certainly not wonder woman

My DH's blood group is B+ve & the average wait time is atleast 5 years for that blood group unfortunately. I am glad we have embryos on ice so that we have an option if the transplant happens but I am very hesistant to get pregnant in the next couple years though...

Bythebeach09 · October 2014

ddvj79 said:
HilarityEnsued, 12 hours every day! Your kidney works 24/7 all the time so when one has no kidney function & is in failure they need the toxins cleaned out of their blood artificially. There is another kind of dialysis called Hemo dialysis which you can do at a center where need to go 4 times a week & the other 3 days the toxins build up in the body & the quality of life on it is very low.

Bythebeach09 for replying. I'm so sorry you are going through this. It is really hard to go through something like this and you are right it does have an effect on everything We don't own our house & we have 2 dogs plus I do have to keep my job to support us if things get even worse. Neither of our families are particularly helpful or dependable...in fact his parents visit is what got his numbers to go even lower thanks to the drama they bring with them, even after pleading with them not to stress him out. Not having a good support system is so hard in these situations

Just breaks my heart that I may have to be the realistic one in the relationship & say no to my husband about having a baby that we so badly want.

I think you're right. Just keep believing there IS a reason for everything.

acesup · October 2014

I cannot speak from personal experience, but I am a social worker and I had a client a few years ago who was on dialysis. I don't remember specifically her medical issues now, but there were more things going on than just her kidney. I do recall that she was on dialysis daily but did overnight (8-10 hours). She didn't sleep well through it. She also had two children, one of whom was autistic and one of whom was born prematurely and had some medical issues. Her husband couldn't work because she couldn't care for the children on her own. She had already had a transplant several years prior but that kidney was failing so she was back in the list. It was Extremely overwhelming for everyone in the family... Financially, mentally, physically, emotionally... It was just a lot.

I think that if I were in your shoes, as hard as it would be, I wouldn't do it. At least not until there was a transplant. I am admittedly not a very strong person when it comes to stress. TBH I don't know what I would do if something happened to DH, and I worry about it all the time because of his job (law enforcement).

ddvj79 · October 2014

piglet6609 !

I will admit that we can afford child care even on a single income (just mine) & DH also has a desk job (we're both software engineers) so, the nephrologist & the dialysis folks think he should be able to keep his job but obviously there are no guarantees. That said, nothing is certain at this point and just because of the uncertainity, its not an ideal situation IMO. Its not just the financial part, I worry tremendously about emotional impact as well.

Because of DH's condition, we both got tested genetically as well to ensure neither of us are carriers because that was a non-starter for us right from the beginning, to knowingly bring a child into the world who might get sick because of our genes & we are having all our embryos tested as well because honestly after going through this ourselves, its too painful to put a child through that kind of life.

I think we may just wait for a transplant and see how that works out...

ShieldMaiden · October 2014

I'm sorry you're going through this. I have PKD, as do many members of my family. I also work for a dialysis provider in a non-patient care role, so I have a fair bit of knowledge about ESRD and dialysis. My dad did PD (CCPD) before his transplant. If your husband will be using a cycler overnight while he sleeps (and perhaps a manual exchange or two during the day) to do up to 12 hours of treatment, the time commitment is not necessarily a deal breaker.

However, how a patient does on dialysis varies so much, and you have to take into account factors like other comorbid conditions the patient has (e.g., diabetes, heart disease), how compliant he is with his care plan, etc. My dad was 49 when he was on dialysis, had no other issues aside from the PKD, and took great care of himself. He managed to continue working the whole time, but after about 6 months in, he couldn't vacuum our small living room without having to rest.

I have PKD as well, but don't expect to need dialysis or a transplant until my 50s or later. I'll be honest, based on my personal experience with all of this, if my or my partner's kidneys had failed before children, I would have waited until post-transplant to have children.

I'd recommend speaking more with your nephrologist and/or your dialysis clinic's social worker about this to help you make the decision. And hopefully a transplant avenue opens up for you sooner rather than later. I was always floored at the number of people legitimately willing to consider donating a kidney to a non-family member when my family members in need of a transplant hadn't received one yet.

Bythebeach09 · October 2014

rvasc said:

Bythebeach09 said:

ddvj79 said:
HilarityEnsued, 12 hours every day! Your kidney works 24/7 all the time so when one has no kidney function & is in failure they need the toxins cleaned out of their blood artificially. There is another kind of dialysis called Hemo dialysis which you can do at a center where need to go 4 times a week & the other 3 days the toxins build up in the body & the quality of life on it is very low.

Bythebeach09 for replying. I'm so sorry you are going through this. It is really hard to go through something like this and you are right it does have an effect on everything We don't own our house & we have 2 dogs plus I do have to keep my job to support us if things get even worse. Neither of our families are particularly helpful or dependable...in fact his parents visit is what got his numbers to go even lower thanks to the drama they bring with them, even after pleading with them not to stress him out. Not having a good support system is so hard in these situations

Just breaks my heart that I may have to be the realistic one in the relationship & say no to my husband about having a baby that we so badly want.
I think you're right. Just keep believing there IS a reason for everything.
I probably should leave this alone, because I really don't want you to get piled on, but this is a really awful thing to say to someone who is in an extremely difficult situation. Maybe it helps you, but it doesn't do the same for a lot of people.

Op, I think you got some good advice here. I'm sorry you are having to make this decision. I really hope your husband gets a transplant soon.

I don't really know why you'd think it necessary to point that out since I've given her a very open, honest and constructive response, coming from an extremely difficult situation. I meant no harm and certainly was not being awful.

OP, I wish the best for you and your DH.

Bythebeach09 · October 2014

rvasc said:

Bythebeach09 said:

rvasc said:

Bythebeach09 said:

ddvj79 said:
HilarityEnsued, 12 hours every day! Your kidney works 24/7 all the time so when one has no kidney function & is in failure they need the toxins cleaned out of their blood artificially. There is another kind of dialysis called Hemo dialysis which you can do at a center where need to go 4 times a week & the other 3 days the toxins build up in the body & the quality of life on it is very low.

Bythebeach09 for replying. I'm so sorry you are going through this. It is really hard to go through something like this and you are right it does have an effect on everything We don't own our house & we have 2 dogs plus I do have to keep my job to support us if things get even worse. Neither of our families are particularly helpful or dependable...in fact his parents visit is what got his numbers to go even lower thanks to the drama they bring with them, even after pleading with them not to stress him out. Not having a good support system is so hard in these situations

Just breaks my heart that I may have to be the realistic one in the relationship & say no to my husband about having a baby that we so badly want.
I think you're right. Just keep believing there IS a reason for everything.
I probably should leave this alone, because I really don't want you to get piled on, but this is a really awful thing to say to someone who is in an extremely difficult situation. Maybe it helps you, but it doesn't do the same for a lot of people.

Op, I think you got some good advice here. I'm sorry you are having to make this decision. I really hope your husband gets a transplant soon.
I don't really know why you'd think it necessary to point that out since I've given her a very open, honest and constructive response, coming from an extremely difficult situation. I meant no harm and certainly was not being awful.

OP, I wish the best for you and your DH.
I'm sure you didn't mean any harm, and you did give a thoughtful response before, and you are also in an incredibly hard situation, but it's still an awful thing to say. I didn't intend to start a fight, and I did not say you were being awful, but I think it is important to say it is a crappy thing to say, because people say it all the time, and I think we shouldn't. Anyway, that's my opinion, and I've said it. I'll leave this alone now to respect the original poster.

All good.

chetrick · October 2014

I opted to start my family soon after I was diagnosed with a chronic illness (multiple sclerosis). Since my diagnosis 7 years ago, we had a son 3.5 years ago and will have a daughter in Dec. Our decision was easy as we both knew we wanted kids and we were both getting older (I am now 36 and my husband will be 44 next month). But the discussions about my future ability to help in parts of parenting were tough. As it is now, the MS has taken away some of my mobility and things like trick or treating with my kids will never be in the cards for me. My husband understands my limitations and has been a wonderful and generous partner in our parenting.

I still work full time (I'm a high school math teacher) and will continue to help my family for as long as I can, but it is a rough rode for us knowing that there will be a day when our lives and the lives of our children will be more significantly impacted by my illness. For now, my husband and I are open to having difficult conversations that offer clarity to our situation and flexible roles in our family that afford both of us what we need when we need it.

ddvj79 · October 2014

SunnySideUp26 rvasc - Thank you!

chetrick - thanks for sharing your story. I am so sorry that stuff like this happens to some of us, hugs to you!
HilarityEnsued - no we arent the same blood group so not a match but there are desensitization methods that they can use. Unfortunately (or not, I dont know yet), the transplant committee has said they would really prefer that I go down the donor route after being done with pregnancy or wait till I am over 40 when they dont factor in being of "child bearing" age.

ShieldMaiden - Yes, I believe a cycler is what is recommended for him. He has CKD with an initial diagnosis of Interstitial Nephritis but the biopsy was not very conclusive.He's been on a CKD diet for 5.5 years now & now has a Sodium and Phosphorous restriction as well. He does work out 3-5 times a week with a trainer per recommendations to keep his weight down but does get quite tired some days. We've been told that he needs to continue his working out even on PD.

We have discussed this topic to death with the nephrologist, PCP, Kidney center nurses (who run all the dialysis stuff) & the consensus was that we should have kids if we want to be parents & that we should be fine. One of the nurses even told me that having a couple extra reasons to live in the form of kids might actually help him mental healthwise. My concern was that they're all older than us in their 50's & havent been around an infant in a while so may or may not immediately remember the stress with an infant crying...so hearing from folks who have been the people who actually did this in their lives seemed like a better data point.

I have got a few responses from folks on PD & our age and who have done this & seems like they manage but its obviously hard...definitely needs more thought before we decide, thats for sure!

ShieldMaiden · October 2014

ddvj79 said:

I have got a few responses from folks on PD & our age and who have done this & seems like they manage but its obviously hard...definitely needs more thought before we decide, thats for sure!

You know, I actually asked my husband about this last night after I posted, and it turns out he strongly disagreed with me. He was there throughout my dad's time on dialysis and for his transplant and recovery. He said he'd want to have kids even under those circumstances because he wouldn't have wanted me to potentially miss the opportunity to have kids.

Thinking back to my dad's dialysis, energy was really his biggest issue. As I said, he hooked up to his cycler at about 9pm, watched some TV in the living room, then wheeled the cycler back to his bedroom at about 10pm while still hooked up. He disconnected around 6:30am to get ready for work. Then he did a manual exchange after getting home from work (not everyone needs to do a manual), which only took about 30 minutes. Aside from that, he had a monthly dialysis clinic visit, a monthly nephrologist appointment, and a monthly lab draw. So the time commitment wasn't too bad.

I think my answer that I'd have waited stems from being a person who has multiple health issues resulting in low energy. Because of that, I wasn't sure I'd be up to doing the bulk of the work kids can generate, in addition to helping my husband with his care, but you may feel differently if you don't have health issues.

ToastieSimons · October 2014

My uncle was in the same position as you guys. He and my aunt adopted, and he was on hemodialysis at the time. Shortly after he switched to the dialysis you do at home every day.

About a week after I was born (about 2 months after they adopted) they got the kidney call.

1) how much support do you have available? If you get the call for a kidney (assuming you have no relatives/friends to donate) you have to go, no matter when. Any type of transplant is a rough recovery and leaves the patient with a compromised immune system.

2)Even post transplant there are lots of check ups and and tests.

3) My uncle was able to work for a long time. He was a security guard at a hotel and they gave him an office to do 30 minute dialysis 3 times a day. He obviously couldn't have a physically demanding job.

4) Why is your husband in kidney failure? is it something that could be genetic? My uncles was, it's why they adopted and he ended up passing away before he was 50. His transplant lasted 7 years until something happened during a function test and his body completely rejected it. He then was on dialysis for about 10 years.

I would want to sit down and discuss long term options, kidney transplants and donators, genetics.

But if you want kids, then have kids.

I have a chronic bone disease, I've had 3 major surgeries and cancer already. it's exhausting. Sometiems I hurt way too much to get out of bed much less care for the kids, but this is the life I chose and I deal with it. I do a lot of homeopathic meds, lidocaine patches, NSAIDS, and pain relievers that don't alter mental state.

We have a lot of support thought. My mom came and helped care for DS1 for 6 weeks after my last surgery.

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