Finally asked DD's kidney dr the dreaded question..didn't like the answer

crene84 · February 2014

We took DD to another kidney appointment yesterday. She hasn't had any symptoms thus far, but the dr keeps saying he is worried about her kidney function down the line. I have been avoiding asking, but finally did..does "down the line" mean when she's 50 or when she's a teenager? Well, apparently it means when she's a teenager..in 10-20 years. And then I asked "what are we worried about at that time, a transplant?" and I was expecting the dr to say "let's not jump that far ahead" or "hopefully we can avoid that" but instead he says "yea, that is something that might happen." Of course that's always a possibility, but the way he reacted made me think it is a likely possibility.

This terrifies me. I remind myself it could be worse, but that's not really helping me during this time. And DH is making it out to be no big deal. The fact that our daughter might need a kidney transplant when she's a teenager is a big deal! I look to him for support and to be strong, but in this situation, it frustrates me...like I'm overreacting or something. You might suggest that he's acting strong for me but really is worried..but I don't think so. He really seems fairly unaffected by this..he thinks it's too soon to worry.

Ugh, I feel so bad that she has this lifelong issue..so scary..

Holly_1007 · February 2014

Hugs mama. My only advice is to take things in stride. I mean, it doesn't hurt to be prepared for something like that down the line, but at least you have a lot of time to process it and figure out the best course of action. I'm sorry your h isn't seeing the bigger picture yet.

hmp1 · February 2014

I'm sorry you didn't get the answers you were hoping for. I do somewhat agree with your husband. A lot will change in medicine in 10-20 years. No reason to stress about all the what ifs our kids future will bring us. Concentrate on the fact that everything is going fine right now, she has no symptoms which is great!

Unknown · February 2014

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Flamingemu · February 2014

I am with hmp here. SO much can change in the next 10-20 years. Concentrate on now. She is not having any symptoms and that is fantastic. FX she stays symptom free for as long as possible.

GR8TDANEMOM · February 2014

I am so sorry you are going through this. I think it is good to be prepared but try to live one day at a time on not dwell on it to much (easier said I'm sure) She may end up not needing one and doing better than you ever imagined. Again this is not a situation any parents wants to be in and I can't imagine. I will be thinking about your family.

tinyhumantoe · February 2014

I'm sorry

that is so heartbreaking. I can't imagine how you are feeling. It might be difficult to cope with that information because it's the type that knocks the wind out of you. I think once the initial shock wears off, you might feel like you're handling the situation better.

As for your DH's reaction - maybe what he assumed in his head was different than what you had - meaning, maybe he was thinking the worst, that this would be an issue for your DD at age 5, 8, 10 - whereas you were thinking 30, 40, 50. It may not have hit him as hard, which doesn't mean it isn't as heartbreaking for him. He may have been more prepared to hear that information.

My DH has a tendency to not eat himself over things he cannot change. It must be a guy thing, and it is really frustrating to me. I've always found that when I press him to the point of breakdown, he is just as panicked as me. He just blocks that, and though I don't think he's 'trying' to be strong for our family, it seems to be an unconscious truth.

Anyway, I'm so sorry

She really is just the cutest thing in the world, and she will be a strong girl. I have a feeling she'll be comforting you through her appointments in several years. My heart breaks for my DD over the smallest things, so I truly mean it when I say I can't imagine the heartbreak - I'm getting teary just thinking of your situation.

AKB090609 · February 2014

I understand that this is not what you wanted to hear, but the issue is with an organ that is easier to find a transplant match for if it comes to that. Medical advances can make huge leaps in 20 years. I'm not suggesting that this is not a worry, but perhaps one that need not be focused on quite yet.

I hope your daughter continues to be symptom free!

miss50 · February 2014

I'm just here for a virtual hug. The previous comments were spot on.

OceanLover26 · February 2014

I'm so sorry.

I know that must be heart-breaking to go through. I am confident, like the others, that there are terrific strides being made in medicine and treatment that will help make anything she might need in the future go smooth. Hang in there and keep your chin up for her. Your DH might just be trying to be very strong for you and be looking at it in a different light so that he can deal with it as well. I'm sure he is taking every bit of it to heart, too. She's a strong chick, momma.

Sending positive thoughts your way!

cmarie520 · February 2014

I'm sorry that you are having to deal with this. We have kidney issues with DS here and they are very frustrating. Keep in mind that you and DH will process this information differently. Focus on the fact that she is doing great right now, you cannot worry about what will happen in 10 years. Did they ever give you a formal diagnosis? Is it with both of her kidneys or just one?

MarisaKathleen · February 2014

Try looking at it this way---you have a great team of doctors in your corner that were able to figure out that something is wrong with her now. Not in 10-20 years. :-) It's great that they have been able to do what they have up until now, and that they're preparing you for what may or may not happen in the future. Look at where we were 20 years ago with medicine--heck, even 10 years!

Just think of everything that could be different if and when she will actually need a transplant!

crene84 · February 2014

cmarie520 said:

I'm sorry that you are having to deal with this. We have kidney issues with DS here and they are very frustrating. Keep in mind that you and DH will process this information differently. Focus on the fact that she is doing great right now, you cannot worry about what will happen in 10 years. Did they ever give you a formal diagnosis? Is it with both of her kidneys or just one?

No official diagnosis..just continuing one test at a time. Unfortunately both kidneys are affected.

MeatballEsq · February 2014

I'm so sorry. All the other ladies said pretty much what I was thinking. We are always here for you though if you need to talk, vent or just get some support.

Stasi · February 2014

I'm so sorry you are going through this. Big hugs.

Like othre PPs said, it's natural to be afraid and sad by all of these medical issues, but there is no sense in worrying about what is out of your control, as difficult as that might be...

Good luck!

watercolor5 · February 2014

Just chiming in to give you more hugs and well wishes. Your family will get through this, as will your beautiful daughter. T&Ps that she stays symptom free as long as possible, and gets the best medical care from her doctors.

willy_gert · February 2014

I am so sorry that you are going through this with your DD! I agree with PP's on a lot of things.

Is her functioning decreased yet? I agree that a lot of huge steps can be made in the next 10 years. A lot has changed in the last ten years for sure! I know transplant is a scary word and a scary thing to think about when it comes to your kid, but honestly from what I have learned over the past five months, the transplant is the least scary thing and the transplant centers do a great job of preparing the ENTIRE family for the transplant and what happens afterwards.

I know it is super scary, but know that we are all here for you and like I have offered before, we are going through a lot of what you may experience in the future now and I am more than happy to answer any and all questions for you!

T&P's for you and your LO! Hugs mama!

Hyaline · February 2014

I'm sorry that the news isn't what you could have hoped for. Honestly, I would try not to expect YH to have a certain reaction--as others said, he may be processing differently or have had different expectations. It's not fair to make judgement statements like "he's acting like it's not a big deal" because I'm sure he loves your daughter and cares just as much as you do--but possibly is approaching this in a different way.

On another note--how much freedom do you have to consider different doctors? Not that yours isn't likely providing excellent medical care, but it sounds like you two communicate in very different ways. See, I'd really appreciate the straight answer of "yes, a kidney transplant is a distinct possibility." It sounds like you would have appreciated a softer approach or a more open answer. It's important, IMO, to have a doc you can communicate well with, especially for a lifelong situation like this one. Especially as it sounds like you still aren't 100% clear--you say that "the way he reacted made me think it is a likely possibility." Did you not feel comfortable asking for clarification, or did he think he had clarified but did not? You should not feel like you have to analyze your doc's tone and mannerisms to get a prognosis!

crene84 · February 2014

Hyaline said:

I'm sorry that the news isn't what you could have hoped for. Honestly, I would try not to expect YH to have a certain reaction--as others said, he may be processing differently or have had different expectations. It's not fair to make judgement statements like "he's acting like it's not a big deal" because I'm sure he loves your daughter and cares just as much as you do--but possibly is approaching this in a different way.

On another note--how much freedom do you have to consider different doctors? Not that yours isn't likely providing excellent medical care, but it sounds like you two communicate in very different ways. See, I'd really appreciate the straight answer of "yes, a kidney transplant is a distinct possibility." It sounds like you would have appreciated a softer approach or a more open answer. It's important, IMO, to have a doc you can communicate well with, especially for a lifelong situation like this one. Especially as it sounds like you still aren't 100% clear--you say that "the way he reacted made me think it is a likely possibility." Did you not feel comfortable asking for clarification, or did he think he had clarified but did not? You should not feel like you have to analyze your doc's tone and mannerisms to get a prognosis!

Yea, sometimes I'm definitely not clear on what he's saying, and normally I make sure that I'm very clear on everything. However, in this situation, I think I'm afraid to get clarity, but I need to get over that. It's important I fully understand her condition. I am near Raleigh and have always been told we have some of the best doctors in the country, so I feel comfortable with the dr we are seeing..I think it's more my fault than his..

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