I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: UkrainianTracksuit on November 12, 2019, 12:26:49 PM
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I don’t know where to post this as it COULD matter to dialysis patients and it also matters to transplant patients.
So, as the title says, how do you come to terms with having to let go of a “dream”, “goal” or “aspiration?” Suggestions?
Like for real, I know that since we want people to think renal patients can do anything, we often emphasize that we live normally as possible, but this dumb disease DOES prevent certain aspects of life, for certain people...
Please don’t take this rudely, but many renal patients I encounter had many years to have their kids before the disease took hold. Obviously, since I’ve been dealing with his crap (or other illness) since I was born, I was always told it would be high risk and to avoid pregnancy altogether.
Then, once I got the transplant, I was advised how all these women have gone on to have healthy babies, so it is possible. The surgeon that still covers my care told me that we’d visit the question a year post-transplant, however, I had some (small) rejection issues (got treated) and then we’d reassess.
We had the reassessment lately and I’ve been advised that it isn’t a good idea to have a kid at all. He noted that there have been successful cases but they were typically premature and underweight. The major concern is that my virus status for EBV and CMV are unstable. Just got over another round of Valcyte because my load was on the increase. If that happened during pregnancy, the baby would face some awful lethal complications.
I mean, it wasn’t like I went into that appointment with bags of hope, but it was like a big door closed. As well, I (as the patient) or we (as the couple) weren’t provided with suitable support after, not like that is a specialist’s job, but in regard to the social work team.
We booked an appointment with a relationship counsellor. I mean, it was okay, but still, no pathway to closure, because I don’t think she had the experience/knowledge of this issue in regard to health impediments. It was general advice to focus on us and find ways to “parent” or “mentor” kids in other ways.
Adoption isn’t easy either if a prospective parent has an organ disease. I mean, I totally understand that because when one becomes responsible for a child, especially one that the system hopes to ensure in a good home, you have to be there for him/her, not become incapacitated to care for a child. Especially with my track record of knocking on the Grim Reaper's door! We can adopt from a relatable country, so, that is our next step of investigation, but not completely sold on it.
Our religion says no to surrogacy.
Some people around us are Western liberal democratic minds, so they say, “I chose not to have kids” or “lots of couples don’t have kids.” That clashes with the voices at home that say, “Couples without children are unhappier and often end in divorce.” or really emphasize the notion that a woman’s happiness rests on marriage and kids, not a career and stuff like that.
I know I’m just repeating myself because this stuff has been brought up in the past. My husband is healthy as an ox, no glaring red flags on his genetic testing (mine oddly too..so, I am an anomaly) and an athlete. He knew if he married me stuff like kids could be out of the picture and he accepted it, at least at the time. At his age, guys now collectively seemed to change to emphasizing “family and kids are the most important things in life!” from girls and sports. They matured.
But the way we were raised just keeps popping up and all those messages/feelings come back. Now I have to really close that door and let it go. But how? When you faced a certain situation, what worked for you?
I am obviously not okay with it emotionally though I have accepted it rationally. Miracles do happen but I’m not counting on it! Thanks to my wonderful disgruntled organs, I get to delve into deep parts of my soul. That is one positive, I guess.
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I've read your post several times, and you know I read all of your posts with great interest. I keep coming back to the same conclusion, that so much of your mindset is shaped around the expectations of others. Your religion, your family, your culture, the "Western liberal" ideas, and most of all, your husband.
It is not always possible to escape those particular tides of thought and opinion, especially when there is a spanner in the works like chronic illness. I find it particularly sad that in your case, it seems that your religion, your family, your culture, the "Western liberal" ideas, and your husband have not been able to give you clearer guidance, support, and a soft place to land.
Where is the value in your life, your very survival? Why is your religion, your family, your culture, etc valuing having a child over your own life on this earth?
I'd also like to know if your religion, your family, your culture and your husband would adequately care for your child should you in fact become pregnant but should give birth to a baby with all sorts of health concerns. Would your husband be happy with that? You've often told us that he couches his value, his place in his culture, and his place on the "man pyramid" on having a child; do I have that right? (Please tell me if I've misconstrued anything.) So, what would happen to his self-esteem if he were to have a disabled child? Would he blame you for that?
Many years ago when my own child was having developmental difficulties, I worked in an organization that provided support to parents of children with all manner of disabilities. I observed that more than one father, upon seeing his child struggle with a disability, simply left. That was especially true if the child was a son. Many men see their children, especially their sons, as a reflection of themselves, so they find it particular difficult if that reflection is somehow broken. How do you think your husband would react to having a severely disabled child? Of course, it is not a certainty that a woman with a transplant would give birth to a disabled child, but it is something we must seriously think about.
Your religion says "no" to surrogacy? Again, is this more important to you and your husband than the chance to have a child? Am I to interpret this as "God has a plan for you, and this is His way of telling you that you are not to bear a child"? So, God says that if you are one religion, then it's OK, but He says that if you worship Him this particular fashion, then it is not? I don't mean to sound disrespectful, but is it really God saying "no", or is it a group of people from the past making a random decision?
I'm curious...what would happen if you and your husband were to disobey?
And how about YOU? Do you have to make a decision right now? Have you consulted a fertility specialist? How difficult do you think it would be for you to conceive in the first place? If you had a supportive family, culture and husband, what would you choose for yourself? How much of a risk to your own health are you willing to take?
As usual, I have many, many more questions than answers. And, as usual, the questions are not really for my own benefit, rather, they are queries for you to think about to help you sort out your thoughts.
Good luck to you, and let us know your further ideas on the subject.
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Hey MooseMom,
Always great to read your thoughts because you do give them such deep consideration. :flower;
Like I said, rationally, I am okay with the results of the reassessment. It is just emotionally letting go of the whole ordeal, you know? My mind is fine with it, but my heart is just in another dimension, if that makes sense. Not sure if this is a 5 Stages of Grief thing... or trying to reimagine my role as a woman. Chronic illness puts a big slap on that too!
I know it is NOT the same for all people as many have gone on to have healthy kids (on dialysis and with tx), but there has to be someone who found a way to be emotionally okay with closing this chapter of life.
To be honest, my husband is pretty okay with the results of this reassessment. He has reached the point of “it is what it is” as he said he had a lot of time to prepare for that conclusion. He wasn’t expecting a green light nor for it to be easy if so. The higher risk of having a disabled child further puts him off because he said he would worry about ensuring its care when/if we reach to be senior citizens and eventually die. He’s also aware that children born healthy end up having awful health conditions and he worries about bullying of kids today.
I really just wish that the people that non-stop go on and on about their families would stop rubbing it in to him though. Not like he’d change his mind or take it out on me, but it must blow to hear it all the time. They have always been confused on his spousal choice anyway! :lol;
My family is fine without me having kids because they know the situation. They are just more worried what is going to happen to family heirlooms or photos that have no place to go. To be honest, I worry about that too! :o
As for religion, it is obviously the interpretation of man rather than the actual word of a higher power. Unless it is on Ancient Aliens (maybe it was!), I doubt that any theologian of the past could wrap their head around surrogacy today. So, it comes down to messing with nature and the natural creation process. If we disobeyed, I’m sure we’d be nagged to death about the awful thing we did.
Both our fertility and genetic testing results were okay/no red flags. Obviously, I would have loved to have a kid, as I have that maternal instinct (at least that is what I think it feels like!). But that door is closed now, so I just need to come to terms with it, but not really provided with any avenues how. Maybe it just takes time.
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Let me see if I have understood the nature of the problem here. I am thinking that the problem isn't so much that you are a kidney transplant patient, rather, it is more specific than that. The problem is your viral load level and the drugs you have to take to keep that load under control. Is that right?
All of those recipients that they've told you went on to have healthy babies? How many of them had unstable viral loads levels?
The difficulties you are experiencing with CMV and EBV...does your tx team expect this problem to be ongoing?
Do you think it would be worth getting a second opinion, or could you maybe speak with a consultant ob-gyn? I would be very interested in seeing what an ob-gyn would have to say.
I do not know if my son will ever marry. I don't think I will ever be a grandmother (and almost all of my friends are becoming grandmas, so this hurts me), so I actually do understand that idea that you might not have anyone to whom you can give family heirlooms, silly as that might seem. But I think it is human nature to want to pass on our history, and not being able to do so can be painful. I look around at all of the things I've loved and would like to pass on, but that's not really possible for me, so I understand that feeling of loss. I don't know if you ever get over it entirely. You can "come to terms" with it, and "it is what it is", but it's still sad and painful.
If there was only one successful avenue, we'd probably already know what that avenue would be. But that would be too easy, wouldn't it.
I am glad your husband and your family understand the situation. I'm sure they love you and want you to be happy AND healthy.
As for surrogacy "messing with nature", well, couldn't the same be said for transplant? I mean, the organs of a dead person have been put into you to save your life, so I'm not sure where one draws the line. Perhaps "creation of life" is treated differently from "preservation of life", but that is a matter for each person to decide for herself. But I am curious...if your religion was not an obstacle to this choice, do you think surrogacy would be something you'd seriously consider?
I am sorry you have to go through this. I know it is painful, and I wish my magic wand was working so that you could be spared this dilemma. But when all is said and done, I'm just glad you're alive.
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Okay, wow, thank you for that last sentence. It is not often I hear that. Wow.
Yes, right on, MooseMom. These days, immunesuppressants can be adjusted for pregnancy just as doctors can monitor the odd instances when a dialysis patient gets pregnant. The viral load is the main issue and infectious disease is following it closely. My immunosuppressives can’t really be dropped any lower to let my immune system do its thing without the risk of rejection. As well, the team aren’t too sure about the cause (besides the original issue of a donor cross match and my lack of immunity) but my cortisol is elevated, so my immune system could be taking a hit from general stress (mainly work related). It is SO very important to take general care of ourselves (low stress, good sleep, healthy diet) when dealing with CKD. Valcyte isn’t the best of drugs to use long-term (as you obviously know) either.
So, they’re concerned if I have a blip like this while pregnant, some awful deformities would happen, like an abnormally small head. Unless, I have a nice stable period, but then that enters early time of a geriatric pregnancy. The transplant team has mostly dealt with only kidney transplant pregnancy but not really kidney-pancreas, though studies show it’s been successful. They have guided women through the whole process, but the patients had prior immunity to CMV and EBV.
I’m lucky to have an ob-gyn that I like a lot now. She hooked me up with suitable birth control methods. I’ll get her insight at my next appointment.
You hit the nail on the head about wanting to pass on our history. Well, my family DID pass on their history to me — renal failure! My cousin recently had a kidney transplant too, but he’s a guy, so a bit easier in the reproductive department. And you’re right that it pretty much comes down to human nature to want to share the best aspects of ourselves in a next generation.
The grandmother thing is especially hard because that’s what my mom is dealing with in her circles too. Though I know you are logical, bright and a good role model here, it must still cause a few pangs in the heart.
Organ transplant is also a delicate topic in the faith too. Some are vehemently against it, while others see it as a gift of kindness.
To be honest, I haven’t given a lot of thought to surrogacy since I knew it was verboten. It’s been in the news a lot because of Kim Kardashian and Sergey Lazarev. The media mocked him saying that he forgot how to have kids normally.
Not sure how comfortable I feel about it, but that could come from hours of Lifetime movies on dialysis. It would require an immense amount of trust.
And that reminds me, please let me avoid dialysis for a long time to avoid such TV movies.
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Ukrainian Tracksuit, I have always thought of religion as something to bring comfort and peace of mind to my life, not as something that is judgmental or somehow as God punishing someone. Even this disease, I suppose has a reason for happening. I know that I have been available to help people more than I would if I were still working 60-70 hour weeks, especially my very aged parents. I see some of these more cultish religions that make claims just opposite of what the Bible itself has, and wonder why people follow them. I think no reputable religion should judge you in any way if you are unable to have a child. I would contend that if god did not have in ind to help us, why would he have given the gift of transplants, surrogacy, adoption or IVF? Don't worry what OTHER people want or expect. Some avenues maybe closed to you, bt others open if you decide they are right for YOU and your HUSBAND. I understand that you are very emotional right now, but when that passes, from everything you have posted here on IHD, you are an extremely intelligent person, capable of reasoning out what is best for you and your husband, and it sounds like he is ready to offer any support he can. Allow him to, make sure you see it as a decision with effects on BOTH of you. Don't shut him out, discuss it with him as many times as you need. In the end, it is only uou and he who can make this choice, hopefully with the help of a clergyman dedicated to helping his parioshioners or congregation, not leaving them feeling worse about themselves.
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I've been thinking about your posts all day, UT. It strikes me that many times, grief is compounded by the fact that we don't always get to make choices, and we don't always get to have even a modicum of control.
Ultimately, you have the opportunity to make some choices here and to claw back some control over your life. Just because your team has never guided a woman in your exact position through a healthy pregnancy ending in the birth of a healthy child doesn't mean it cannot be done. Ever. What you can do is talk to as many people as possible who can give you the most information possible, and then you and your husband can decide what you want, which risks you are willing to take and which you are not.
If you are presented with more facts and more information from more doctors, perhaps you will feel more comfortable, and more in control, with the decisions you make. That feeling of getting to make an informed choice might make you feel stronger. Having a decision foisted upon you, even if it is the wiser choice, can be very frustrating.
I have not thought a lot about surrogacy, so I'm not pushing that idea one way or the other. I do not think I would have been comfortable having a child that was biologically my husband's but not mine. Upon thinking about it, I don't think I'd have a problem with having a surrogate who would give me such a gift as giving my growing baby a home for a short while if that baby was genetically mine. Does that make sense? Does CMV/EBV and/or the meds have any impact on the genetic quality of your eggs? Again, I'm not pushing the idea, but as I think about it, I am becoming very curious! Sorry. My mind tends to run off on all sorts of tangents!
I've never seen a Lifetime movie, but I can see where one would really mess with your head!
Anyway, I guess my point is that whichever decision is made, make sure it is YOUR decision. Yours and your husband's.
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I don’t know where to post this as it COULD matter to dialysis patients and it also matters to transplant patients.
So, as the title says, how do you come to terms with having to let go of a “dream”, “goal” or “aspiration?” Suggestions?
Like for real, I know that since we want people to think renal patients can do anything, we often emphasize that we live normally as possible, but this dumb disease DOES prevent certain aspects of life, for certain people...
Please don’t take this rudely, but many renal patients I encounter had many years to have their kids before the disease took hold. Obviously, since I’ve been dealing with his crap (or other illness) since I was born, I was always told it would be high risk and to avoid pregnancy altogether.
Then, once I got the transplant, I was advised how all these women have gone on to have healthy babies, so it is possible. The surgeon that still covers my care told me that we’d visit the question a year post-transplant, however, I had some (small) rejection issues (got treated) and then we’d reassess.
We had the reassessment lately and I’ve been advised that it isn’t a good idea to have a kid at all. He noted that there have been successful cases but they were typically premature and underweight. The major concern is that my virus status for EBV and CMV are unstable. Just got over another round of Valcyte because my load was on the increase. If that happened during pregnancy, the baby would face some awful lethal complications.
I mean, it wasn’t like I went into that appointment with bags of hope, but it was like a big door closed. As well, I (as the patient) or we (as the couple) weren’t provided with suitable support after, not like that is a specialist’s job, but in regard to the social work team.
We booked an appointment with a relationship counsellor. I mean, it was okay, but still, no pathway to closure, because I don’t think she had the experience/knowledge of this issue in regard to health impediments. It was general advice to focus on us and find ways to “parent” or “mentor” kids in other ways.
Adoption isn’t easy either if a prospective parent has an organ disease. I mean, I totally understand that because when one becomes responsible for a child, especially one that the system hopes to ensure in a good home, you have to be there for him/her, not become incapacitated to care for a child. Especially with my track record of knocking on the Grim Reaper's door! We can adopt from a relatable country, so, that is our next step of investigation, but not completely sold on it.
Our religion says no to surrogacy.
Some people around us are Western liberal democratic minds, so they say, “I chose not to have kids” or “lots of couples don’t have kids.” That clashes with the voices at home that say, “Couples without children are unhappier and often end in divorce.” or really emphasize the notion that a woman’s happiness rests on marriage and kids, not a career and stuff like that.
I know I’m just repeating myself because this stuff has been brought up in the past. My husband is healthy as an ox, no glaring red flags on his genetic testing (mine oddly too..so, I am an anomaly) and an athlete. He knew if he married me stuff like kids could be out of the picture and he accepted it, at least at the time. At his age, guys now collectively seemed to change to emphasizing “family and kids are the most important things in life!” from girls and sports. They matured.
But the way we were raised just keeps popping up and all those messages/feelings come back. Now I have to really close that door and let it go. But how? When you faced a certain situation, what worked for you?
I am obviously not okay with it emotionally though I have accepted it rationally. Miracles do happen but I’m not counting on it! Thanks to my wonderful disgruntled organs, I get to delve into deep parts of my soul. That is one positive, I guess.
Dear UT, reading your thoughts touched me very much and perhaps it might be a good idea if you and your husband could talk to parents of a child who was born handicapped as a result of kidney-matters affecting one or both of the parents?
Mind you, you and your husband could be the lucky exception, but what, if you had a handicapped child after being warned about the risks by your doctor and going ahead with a pregnancy nevertheless?
What about your own health during a pregnancy? Could your body withstand it?
Another important point to consider is the fact that you have had a kidney-transplant, so the DNA of your kidney-donor could also play a part in this as well? How well do you know your kidney-donor?
The thought about all this is very difficult, of course and it is also not easy to face, but these days many medics have fortunately become unceremoniously outspoken about this matter and “lay it very honestly on the line”, so to speak.
I wish you and your husband lots of strengths and lots of luck with your decision and I send you my best wishes from Kristina. :grouphug;
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Hi kristina, thanks for your kind message.
I am not even sure where I would find such a couple to discuss such matters. For the most part, tx pregnancy is undoubtedly high risk, but many have gone on to have pretty normal kids. All the transplant information supplied by the clinic says it is possible, but requires extensive monitoring.
I am actually very healthy despite the transplant. I would probably be healthier if I didn’t have a high stress job right now (lack of sleep, long hours, deadlines).
You’re right that I don’t know much at all about my deceased donor, besides that they were low risk and young. That said, their DNA would not impact a future child, as the DNA for procreation comes from gametes, which are distinct and unaffected by organ tx.
All of that said, yes, I agree it is best to heed the advice of learned specialists. My focus here was how to emotionally let go/be okay/have closure instead of being adamant on having a kid no matter what.
Rationally, I’ve accepted that won’t happen. My brain accepts it, my heart is another story, but it will get there!
MooseMom, you’re right that a lot of this comes from a lack of control or a real inability to make decisions. In a perfect world, it would be terrific if basically healthy people or those that don’t struggle in this area realized the luxury of choice. As much as I’ve tried to gain back some control in my life, biology likes to stop me in my tracks from time to time.
You are correct in that all I can do right now is gather information and talk with specialists. Perhaps in a little while, but right now, I just want to “be okay” no matter the outcome.
As my husband has matured and priorities changed, I’ve even gone so far as to offer an amicable divorce, if he was set on family life. Obviously, he said no and we’d work through it.
As for my eggs, I’ve not been told about viruses affecting them, and as it currently stands, I’ve still got (what looks to be) good ones. Bawk bawk! :laugh:
GA DAWG, I agree so much with your post. Faith should be a source of comfort, rather than anxiety, but it has not been kind to me recently. The more that the “culture of death” narrative is pushed, the more steadfast they get on life. And heaven forbid if you are deemed a modernist, or even talk about some basic scientific fact. For example, there is a fringe element of anti-vaxxers. Like, I just can’t some days.
It’s also true the situations we end up in open other doors, such as your enhanced availability to help people, especially your aged parents. This condition enabled me to be there for my grandfather, as he did dialysis into his 90s. We’ll always have that connection and quiet understanding, though he’s no longer with us. I’m sure had I been healthy at the time, I wouldn’t have devoted as much as I did to him. (Although I was pushed to make my own life.)
And yeah, throughout all this, I have to actively make sure not to shut my husband out, as I tend to do sometimes. Often, I feel like he doesn’t understand (because he’s healthy). It usually starts off with me saying he got where he is today primarily because he’s a workhorse and made decisions accordingly, not that nagging reminder.
Just want to say thanks to all that there’s a place to talk about this. :thumbup; :thx;
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And then there is the moral question. I hope this doesn't sound too harsh, but bringing a child into a world that seems to be deteriorating may be irresponsible. The many problems that we face, from climate change to drug-resistant pathogens, are what they call existential threats, and no one is immune to them. Maybe this thought, as grim as it is, will help you to let go.
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enginist, I have come to exactly the opposite conclusion. It seems abundantly clear to me that our generation and the one right after, is incapable of solving any of the problems we face. I DO hate kicking the problems down the road to them, but just maybe they can learn from ur mistakes and actually do smething to make life better.
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There's not enough time. Frankly, I'm glad I won't be around when it all goes to hell.
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There's not enough time. Frankly, I'm glad I won't be around when it all goes to hell.
I beg to differ because it is my opinion that we are living in a very lucky time! Dialysis has become much more developed and therefore made much more bearable for our body and kidney-transplants are also going very well, so there are no complaints ... If we were living during any other time we would not even be alive anymore because of ESRF, let alone have a chance to hope for a kidney-transplant...
And then there is music ... any other time we would have had to be extremely rich to have our own orchestra to enjoy the privilege of listening to music at all ... whereas these days we have our own collection of LP's, CD's, Radio etc. and all we have to do is to switch it on etc.
Furthermore, if we come up with an interesting idea or new invention, all we have to do is to switch on the computer and check up whether or not this idea has already been thought out or not.
Our health services are extremely well developed as well these days and doctors have become very dedicated ... in any other century we would not have been that lucky at all and doctors would not know what to do for us in ESRF, in fact, they would not even had a chance to diagnose...
Then there are all these Museums which are free for us to visit, Libraries are free (thanks to Mr. Carnegie) and we can borrow from the Library any book we fancy to read...
We are also lucky with transport-possibilities these days ... For example Mozart had to sit in a small carriage for many weeks to get from A to B, whereas with our transport possibilities these days it is only a question of hours.
Sanitary possibilities are also so much better in comparison to other centuries.
That is just all that springs to mind and I can't see anything wrong with it and I am very grateful.
Mind you, I am well known as a "chronic optimist" ... :grouphug;
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Yes, of course, Katrina, there are many things that make life worth living, but I am not referring to any of those. I am referring to the things that make life not worth living, such as natural and man-made disasters, widespread famine and disease, and the complete breakdown of the social order. If just one of the projected calamities occurs--specifically, the failure of the power grid--there will be no electricity for radios, CD players, subway trains, museums, libraries, hospitals, or dialysis centers. A case of chronic pessimism? I devoutly wish that it were so.
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Hello enginist,
This is difficult to answer, because on one side you are right with your observation that there are many man-made and natural disasters, famine and disease and you are also right about social order not being how it really should or could be.
... And very often we can observe evil people succeeding (not only politically), whilst good people are often being oppressed etc., even supposedly democratic voting polls are being "played around with" etc. etc.
But I still believe that life is still worth living despite all that and, to put the balance straight, there are still so many good and interesting "things" that have not been discovered yet and I look forward to their discovery.
Mind you, I completely understand where you are coming from ... but I still believe in a good balance somewhere between plus and minus, despite the fact that at times it really becomes a bit difficult to see ... :grouphug;
Best wishes from Kristina.
P.S. Ii is very noticeable that over the years/centuries there was often a destructive element being observed, but at the same time "they" would not go ahead with complete destruction because, after all, "they" would not like to see their own destruction, would they?
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My life was filled with disappointment, my first love died, when I was 27 I met the next love of my life I spent the next 13 years chasing a women who would come back and then leave repeatable over 13 years. Finally at 42 I met my current wife 26 years later we are still together. What has carried me through my life is the knowledge that what will be will be.
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Well, keep in mind that just 75 years ago, you would've had only 2 choices: pay for dialysis out of your own pocket (rarely with good results over time), or just decide to die. Yeah, we've all been dealt a bad hand with our kidneys, so we have to make the best with what we are given.
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I am unable to support organized Religion. Most Churches have heavily edited the Bible to reflect what the Church wants us to Believe, not necessariloy what was originally written. I search for Lost Books. I have amassed a lot.
I am not aware of any writings that would prevent a Surrogate.
When Sarah was barren she sent her Hand Maiden in to Abraham so he could father a Son.
Your eggs can be harvested, fertilized by your Husband, and implanted, grown, and born by a Surrogate. This would be YOUR Biological Child.
If there is Ancient Biblical Writings that bar this Please direct me to it.
There are many couples that do not have children, whatever the reason, whether it be medical or simply no desire to procreate. Thge lack of children is not necessarily the cause for a Loving Couple to separate. Much the same when a couple loses a child, far too many cannot withstand the strain and separate. It takes serious commitment to Marriage to remain together.
Sadly, no onoe else can make any of these decisions for you. Communication with youro Husband is critical and you both must gain as much information as possible before making a commitment either way.
Which ever decision you both make will be the correct one for you both as long as it is mutual.
Take Care,
Charlie B53
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Well, keep in mind that just 75 years ago, you would've had only 2 choices: pay for dialysis out of your own pocket (rarely with good results over time), or just decide to die. Yeah, we've all been dealt a bad hand with our kidneys, so we have to make the best with what we are given.
The Seattle death panel was in business in 1961; 58 years ago.
Being able to pay the then $10k/year fee only made you eligible to apply to the god panel for a slot in the schedule. The vast majority were turned down.
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I am unable to support organized Religion.
To me it is simpler. Either a corpse was resurrected and consciousness survives death or neither of these things happened. I am of the belief that extraordinary claims require extraordinary proof. It is not reasonable to believe a teapot orbits the sun between earth and mars, and to claim your belief should be accepted as truth unless and until someone conclusively proves there is no such teapot. (google Russell's Teapot).
If the corpse did not resurrect and consciousness does not survive death, all flavors of the christian religion are hooey. The "faith" argument is like the psychic who explains her powers are very real, but simply do not work in the presence of skeptics or non-believers.
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Like for real, I didn't post or ask this question for this to turn into a bashing of faith or a debate about it. It doesn't add anything positive nor beneficial to the discussion.
I had hoped a woman experienced some similar feelings in the past in her life. Guess not...
Talking about death panels and so on might be useful discussion for you, but at least have some tact and empathy on a topic such as this. People can have all the knowledge in the world but without using it tactfully, it is just in bad taste.
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I think I might have more of what you are looking for, UT.
When I was 23, not long after my second transplant, I asked my then boyfriend for a baby. I'd wanted to be a mother for as long as I could remember (actually, I wanted to be a grandmother, but that's another thing all together). He said no. Now, nearly 20 years later, I can understand his reasons, and they were good ones. He was afraid of what affect pregnancy would have on my transplant, and he was afraid of the pregnancy being fatal to me and he'd be left to raise the child alone, or lose us both. By the time I was 36, I had been on dialysis for 10 years, with no real chance for transplant. I had to face the fact that motherhood just wasn't in the cards. It was a hard pill to swallow. The hardest part for me was my mom's younger sister kept rubbing my mom's nose in the fact that she had grandchildren and my mother did not. My brother has kidney issues, and my sister in law has other medical issues, and though they did try and were almost successful, children together isn't in the cards for them either. She has two children of her own, and he helped her raise them, along with her niece, so, technically, my mom has three stepgrandchildren that we've known since about the time they started school, and they are all adults now.
Something that I've discovered in the five or so years since I realized that motherhood was something I'd never experience, I kind of like my life the way it is. As angry as I was at that boyfriend for saying no, I'm glad he did. If I'd been able to have that child, he/she would have had a horrible childhood. They would have had a seriously ill mother, who got very sick very quickly, who was devastated and went through a severe depression when her best friend was murdered, is slowly going blind, and is just beginning to feel comfortable in her own skin with her lack of heterosexuality. That child would be an adult now, and would probably not be happy with me or their father, who is actually quite comfortable in his skin with his lack of heterosexuality.
When it comes to family heirlooms, I've been thinking about that lately. I don't have many, but what I do have, I cherish. I have a string of pearls that my great grandmother gave me when I was 10. It was made from a 3-strand string that my grandfather bought for her with his first paycheck. She had it cut into 3 strings. One she gave to me, one she gave to my older cousin (we were the two oldest great grandchildren) and the third she kept for herself. She was buried with her string. My older cousin has a daughter that she can give her string to if she wants to. The next cousin younger than me has always resented not getting a gift like that from our great grandmother. She now has a daughter at about the same age she was when Gramma gave me my pearls. I've decided that since she never got a set, and her daughter has no sisters (so no fighting), her daughter will get my set when the time comes.
Having been in your shoes, I know that right now, your heart is hurting, and if you take a similar path that I did, there will always be a part of it that hurts when you think of what might have been. With acceptance, you can look back at this time with a clearer lense, like I have, and understand that those decisions were the right ones to make the life that you have.
Or..
If's possible that you could go a different path. Perhaps somewhere down the road there is a scientific breakthrough that makes it safer to conceive even with your viral load. Or you could adopt. Or you could go with a surrogate or gestational host. You and your husband would be great parents for that child or children (why stop at one?). We can't predict the future, and anything is possible.
Whatever happens was meant to happen, and in time it will all make sense. I hope this is more along the lines of what you were looking for.
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I've managed to 'let go' of a lot since starting dialysis. I left religion years ago, finding it to be nothing more than a waste of time and money, as well as being a threat to logic. But since starting dialysis, I've let go of many old aspirations:
1) I've given up any hope of extensive foreign travel
2) I've given up my gym membership, since I never have any extra time
3) I've given up almost all volunteer work, since I have no time or extra energy
4) I no longer aspire to advancement at work; I'm now just waiting until age 62, when I can retire.
But, I still have hope. Domestic travel is a pain, but at least possible. I have 2 beautiful cats, and a wonderful partner. We have a nice house, and a few good friends. I look forward to having a secure retirement, hopefully at a nice place in New Mexico. Although a week with 50+ hours of work plus 3 dialysis treatments pushes me to my limits of endurance, at least I'm still building my retirement portfolio. Less than 4 years, and I'll be ready to start living off it all.
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I enjoy what I have.
I lost the ability to travel internationally. My transplant nephs says I can; I say too risky (except Canada, eh? and only within a couple hour drive of the border).
I rejoined my former company at an "almost but not quite as senior a position". Funny thing - I used to be concerned about the next promotion. Now, I have a different perspective and only 4-5 years of full time work left (if I am lucky) and only care about getting good assignments to work on.
I refused to give up domestic travel, and my local clinic was very good about arranging transient appointment for me. Since I was a home hemo patient for most of the time, I got varying reactions - including "can you wait until we get the entire staff over here to watch, we've never had a patient do this" when I punctured myself.''
Losing my dog was a far more difficult emotional hit than starting D. I really liked that little guy.
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1) I've given up any hope of extensive foreign travel
May I ask why? Except for money, there really isn't a reason you can't travel. I try to go somewhere every year. Last year was Philadelphia, next is Denver, and yes, for me this is foreign travel, as I'm Canadian. I also hope to go to Bermuda at some point, and I really want to take a cruise. All of this can be done, it just takes a bit of extra research and planning.
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1) I've given up any hope of extensive foreign travel
May I ask why?
Your situation is different from mine since you are on D. As a transplant patient, I have to be concerned about two things: (1) Getting foreign bugs, and (2) Navigating a foreign medical system if I get sick. I never had interest in Europe, but my employer did send me to India. Sparing the details, I was concerned that some TSA goon would accost me for spending so much time in the airplane restroom on the way back and my wife demanded I get tested for intestinal parisites.
I have no issues with domestic travel (except perhaps to Flint, Michigan) because we are a "safe to drink tapwater" country and I know a decent amount about the US medical system, and there is at least some accountability on the part of the MDs.
I would not hesitate to go to Canada, eh? as it is a first rate civilized country.
I might feel differently if foreign travel was important to me, but it isn't.
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"Losing my dog was a far more difficult emotional hit than starting D."
Simon, that is a very interesting comparison. We all know the strength of the human-canine bond, but I never considered that it could make dialysis more tolerable. Maybe I could make a deal with the devil. I'll do D, if that time comes, in exchange for a dog. The dogs are out there, but the trick is that I live in a no-dog building, and the arrangement is just too good to leave.
You should give it some thought, UT. You're feeling bereft in your childless state, but a dog is a good substitute. And I'm not being flippant. Dogs have the mentality of a two- or three-year-old. Give a good one a fair chance and it will steal your heart. Just make sure it attaches to you, and only secondarily to your husband.
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1) I've given up any hope of extensive foreign travel
May I ask why? Except for money, there really isn't a reason you can't travel. I try to go somewhere every year. Last year was Philadelphia, next is Denver, and yes, for me this is foreign travel, as I'm Canadian. I also hope to go to Bermuda at some point, and I really want to take a cruise. All of this can be done, it just takes a bit of extra research and planning.
Because Medicare pays NOTHING towards treatments outside of the US. I live only 60 miles from the Canadian border, but have done no visitation other than a couple of day trips. I used to travel all across the eastern half of Canada, but can't do that anymore. I'd love another weekend trip to Montreal, but I'd have to get back really quickly for treatment in the US.
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1) I've given up any hope of extensive foreign travel
May I ask why? Except for money, there really isn't a reason you can't travel. I try to go somewhere every year. Last year was Philadelphia, next is Denver, and yes, for me this is foreign travel, as I'm Canadian. I also hope to go to Bermuda at some point, and I really want to take a cruise. All of this can be done, it just takes a bit of extra research and planning.
Because Medicare pays NOTHING towards treatments outside of the US. I live only 60 miles from the Canadian border, but have done no visitation other than a couple of day trips. I used to travel all across the eastern half of Canada, but can't do that anymore. I'd love another weekend trip to Montreal, but I'd have to get back really quickly for treatment in the US.
For the record, Canadian Medicare doesn't pay for medical treatment of any kind outside of the country either. I pay upfront for my dialysis treatments in the US. I do get a set amount reimbursement when I get back, but it usually doesn't cover the whole amount
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My apologies for getting back to this so late. Work has been insane and non-stop. Some days, I worked from 5 in the morning to 11 at night. And then, I had another transplant check-up out of town, so not sure where my mind went.
After all this time thinking about the original topic, I am pretty okay about it now. There are times when I get pangs of feelings (like if I see something related) and I have to admit I was a bit upset to hear of a liver tx recipient getting pregnant. I wish her all the best, but I just felt down in the dumps for a bit.
My husband and I are discussing our future though. Like, what do we really want? After Putin’s state of the nation speech with constitutional changes, my husband isn’t too keen about his desire to move back. Naturally, more announcements to increase the birthrate just made me wonder if I even have a place in the country - at all! I would probably be viewed as a sponge that takes, takes, takes but doesn’t contribute. Who needs to deal with that?
As for a dog, we’ve seriously considered it, but it’s the lifespan issue that bothers us. I’m open to adopting any shelter dog, but my husband wants a Russian dog. There are puppies from Chernobyl that he’s waiting on to be available for adoption again, but there are so many from other shelters over there that look so sweet. We are trying to figure out the logistics of the last leg of transit for a dog to our town...
My husband is playing ice hockey and taken up to speed skating again. So, kids aren’t on his mind and it’s still “it is what it is.”
I got so angry though at one of our local renal nurses though. She said, “well, you should have had kids before dialysis then.”
Meanwhile, at stage 3, the doctors already told me to be careful in that regard. I could have slapped her to high heaven!
Finally, I’m seeing a therapist or a life coach or whatever it is. It sounds so cheesy but I need to redefine who I am or what a “woman” is. So, instead of focusing on the drilled in “mother” narrative, I need to find the other roles I play that are just as important.
Hey kidneys... so far away from our brains, but affecting them all the same.
Thanks to those that contributed valuable feedback and views.
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Thank you for the update.
Putin's state of the union speech is a bit frightening, and I can see why you and your husband would have second thoughts about returning to Russia.
Seeing a therapist of "life coach" is a wise choice. It is not cheesy at all. You are too smart to trap yourself forever in the "mother" narrative because that is all it is, a "narrative". It is unfair that there is no corresponding "father" narrative. But that is another topic, isn't it!
Good luck in all aspects of your life. Please do keep us informed, at your convenience, not only on your emotional wellbeing but also on your physical health. They are connected in oh so many ways, as you have seen.
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For medical reasons I chose not to ever have children. No matter how small the risk, I did not want to take the chance of passing on pain and illness to an innocent child. I have never regretted my decision. Whenever I see a child being mistreated or neglected I get angry and then that is when I feel sad because I believe I would have been a good mother. I hate seeing people with children abuse or neglect them. They seem to not know how fortunate they are to have children. But no, I don't feel depressed for not having of my own. I guess I've gotten the little pangs when thinking about it but overall, it hasn't bothered me. Right now we'd love to have a little dog but even a dog is a big commitment. We want to make sure that we are healthy enough to care for one and can afford one and right now the answer is no. Kind of sad about that but glad we are doing what we believe is the right thing to do/not do.
Try to focus on your health, your new transplant and goals. These do not need to include what you think they might...
self edited to correct grammar (of to for)
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MooseMom, I don’t get anxiety over the news or things “detached” from me, but omg, talk of all these transitional changes and all this stuff does make me queasy.
PrimeTimer, thanks for offering your insight. The one thing I take away from your posts (well, more than one thing..) is that you and your husband are an extremely caring - and responsible- couple. And I mean “couple” in the truest form in that you guys are a team.
I agree completely with you in regard to seeing neglected/abused children. It also breaks my heart to see those in unstable financial situations because I know we could have provided a lot for a kid. Not spoiled, but emphasis on school etc.
Further, I agree with you in regard to pets. They are wonderful, but also a responsibility and cost. You guys are so logical. What’s really apparent is that what’s good for Couple 1 and 2 might not be great for Couple 5. It’s up to those to communicate and work it out.
As for goals, definitely this reexamination of life should reveal some new ones.
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PrimeTimer always has useful insights!
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No offense to all the kids out there, but dogs can fill an emotional gap as well as a baby. There's something about the canine soul that brings out the best in all of us. Plus, a dog won't grow up and start to resent you.
The cost of owning a dog can range from $100 per month to much higher than that, depending on its size and health. Regardless, your expenditure would be far less than it would be for raising a child.
I can see the incentive to adopt a dog from the old country, but a dog doesn't know where it's from. It doesn't bark with a familiar accent or have a preference for certain kinds of foods. I'm sure you could get a Canadian dog that has genetic roots in your native land. Then the link would still be there, minus the complex process of importation.
Yes, they die far too soon, and the loss can be devastating. But the best way to get over it is to get another dog.
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Whaaaaaat??? Dogs don't have accents? Why am I just learning about this now???? :P
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No offense to all the kids out there, but dogs can fill an emotional gap as well as a baby.
Dogs are BETTER than babies. I'd rather have a dog than a human kid.
Whaaaaaat??? Dogs don't have accents?
Dogs DO have accents. From the department of "scientists wasting state funding on stupid research" we know that dogs develop local accents. And not just from country to country, but from different parts of the same country, in the same way as humans.
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I'm also told, by people who like the things, that a cat is also a good alternative. I cannot see it myself, selfish, self centred animals, but I suppose that if your favourite stage of a child's growth is a moody selfish teenager, then I guess a cat is for you.
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An even better alternative is the Maine Coon cat, said to be the most dog-like of felines. Playful and affectionate, they'll follow you around the house but won't demand attention. However, if you're in the mood, they'll gladly accept a tummy rub. The only drawback is the cost. Plan on spending about $1000.
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We are leaning towards a big bird with a trust fund. If they live 50+ years (like the breeders say), it will outlive us. That way, we’d have a screaming child that will learn how to swear, throw its food, demand everything be done its way, reach sexual maturity (and be frustrated), dance, need toys, showers, home cooking and need its own room. Probably abuse us in our old age too. All of the things I see raising a child is about without the child. We’ll probably be disowned from our families for going off the deep end (animals don’t equal kids to them), but I’m okay with it.
I’ve been cleared by the tx team for birds awhile ago. Still want a dog too. This must be what they call family planning!
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I once acquired a bird that I thought would sing for me like an animated radio. What I got was a moody, demanding creature that behaved like a caged teenager, exactly like you're describing but without the trust fund.
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If you get a dog, consider naming it Henle. It is appropriate.
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Just remember the late great Bill Peckham took a trip on a raft down the Grand Canyon. He took a next stage and some where on this site is a picture of him sitting in a raft with the Grand Canyon in the background. What Bill showed us that with planning you can do just about anything.
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I remember when Mr. Bill was looking for a raveling partner on an Artic or Antartic cruise so there would be a backup NxStage on the boat for both patients.
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Yes he was a hell of a special person.