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.
There's not enough time. Frankly, I'm glad I won't be around when it all goes to hell.
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.
I am unable to support organized Religion.
1) I've given up any hope of extensive foreign travel