trying to stay positive

[Sunny]

Well, a few weeks ago I had my reevaluation at Stanford transplant center. They congratulated me on my stabilized kidney function (30%,creatinine usually 2., and explained I may be the lucky one and never need a transplant or dialysis, keep up the good work, we will keep you on our stand-by transplant list just in case, etc., etc.
     I'm very happy about all that, always have been. I know I am so fortunate and thank God everyday. But I'm still left to live my life as best as possible with my condition. Always fearing infections due to my lowered immune system. Always feeling worn and tired with about 4 good hours per day of energy. Always wondering when and if my kidneys will finally give out on me. This is a tuff burden to carry.
      I've managed for almost seven years now. That's the way it is for me. I keep a stiff upper lip because my sixteen year old still needs me (Barely!), my eighteen year still needs me (He's away at college), and my husband shows me every day how much he wants me around. Still, every once in a while it really hits home for me about the fact my kidney disease will always be with me.
      Every once in a while it's hard to take. Today is one of those days.Thanks for listening.

[okarol]

Hey Sunny,
That is tough to have those worries, but some of that is good news. I know if feels like the pressure of wondering and waiting is too much, but I hope you can avoid dialysis for a long time. When Jenna was diagnosed her creatinine was about 3.5 and they told us she had 1 to 5 years before needing dialysis or a transplant. Her kidneys failed after 2 1/2 years (creatinine at 10) and the worry never went away. The fact that you have low energy would be the biggest problem because you are not 100%, even though you are considered to be stable.  You sound like you have a great family and I hope that carries you through the difficult days.

[Romona]

Sunny, I hope you stay where you are. This is all overwelming at times. Seven years is a long time. It must be hard not to know what's going to happen next. 

[Rerun]

Sunny, on those "other" days I hope you know how lucky you are.  If you get a transplant do you think all your worries are over?  Heeeelllno!  You worry everyday how long your transplanted kidney will last.  You worry that someday you'll have to go back on dialysis.  You worry that you can't afford one more year of meds.  You worry that your face will explode due to the prednisone. 

Enjoy your "other" days.

Rerun

[Sunny]

Thanks for your words of advice. Every so often I have an off day or two, as do we all. It's amazing how just waiting another 24 hours  makes things look different.

[ODAT]

Hi Sunny, I had a beautiful reply to you, but the computer ate it. Hopefully I can sound just as sincere as the first time. You helped me with my mom a while ago and your words I told her. She gained some relief in knowing that someone has gone 7 years without needing to start dialysis.

It's funny how there are so many 'ways' we can improve ourselves out there. Buy this exercise video, take these herbs, etc. Ya think the people who come up with this stuff really know what they are doing? An example is one day coffee is good for you, the next it isn't - then it's everything in moderation.

Waiting it out is usually the best approach. Reacting to a feeling too quickly can get you into a pickle sometimes. Monday's are really bad for me. It's a compilation of a weekend with a hubby who at times goes head to head with our 15 yo. Yep, I've got 'em, teenagers. Two boys - one to be 16 in March, and an 18yo who goes to college, but lives at home. I give him the freedom he needs though (I should make him do his own laundry, but we have a huge washer so he would have to wait too long to get his clothes). This recent Monday, I got an invitation to dinner with the bosses. This year is really hard at home and at work. I didn't respond to it that day but the second day I tentatively accepted. Told my boss I had to check on a few concert and party dates. He said 'no problem, just let me know.' It took four days for me to clear my head enough to decide. I will go. It will be hard enough this season having the first Christmas without my dad, along with the more recent loss of my uncle, and past loss of brother and nephew. So I figured I need to be there for everyone in my family and for myself. I don't want to miss out on any smiling faces of family members or opportunities to make myself more known to people I work with.

And, no, this one isn't as good as the first reply. I apologize. What I wanted to convey is that while I cannot begin to imagine the difficulties you go through, we all tend to let ourselves become overwhelmed with dispair and sadness. You gave yourself the best advice to just give it time. You also have to allow yourself the time to feel this way. If you try to suppress it, things would only be worse. The one thing that puts me in a better mental state is sleep. I have a saying 'Sleep is to humans as Defrag is to computers.' Our brain cells put themselves back in the proper order while we sleep so they fire properly. Think I'll go take a nap now! (wishful thinking…) take care Sunny, talk to you soon. 

[Deanne]

I'm glad you're feeling more "up" now!

I might understand where you're coming from. I have about 25% function left. I'm grateful. Living in limbo is hard. Ya don't want to leave limbo-land because ya know what comes next, but in limbo-land, life is all about the constant "what if's" with no answers. I don't know whether little things I feel are due to my kidneys, if I'm being a hypochondriac, or if "normal" people have these same experiences. Whenever I see my neph, she always comments on how surprised she is that I'm still doing so well. I never know how to take that -- should I feel lucky, or should I be expecting the other shoe to drop by my next appointment?

[paris]

I have been holding at 15% for most of this year. Each month my neph tells me how good I am doing at keeping all my numbers where they need to be.  I do everything I can to take good care of myself and listen to my body like I never did before.  I want to stetch these "holding" days out as long as possible.      Sunny, I hope you can stay at 30% for years and years, even if it means being tired and changing your lifestyle.  I hate that you have kidney disease, but pray you continue as you are. 

[Sunny]

Thank you everyone. It is possible to hang in there with low functioning kidneys. It takes lifestyle changes which can be hard to get used to. And yes, I have learned to really listen to my body to do whatever I can do to help my kidneys last. It's nice to know you are there.

[xtrememoosetrax]

I have a saying 'Sleep is to humans as Defrag is to computers.' Our brain cells put themselves back in the proper order while we sleep so they fire properly.

Very cool idea.  I'm going to remember that.

[st789]

Good jobs in managing it.  Yep, even after kidney transplant, there are still so many things out there to worry.