When it rains, it pours.......

Wow...not a good week/month to be a member of my family, healthwise, that is.

1. My Grandma is having surgery tomorrow to replace a vein in her leg (how awful does THAT sound!)
2. My Dad is having an angiogram on Thursday because he has congestive heart failure and coronary artery disease...yeah, double whammy on that one :(  If they can, they'll try to put a stent in, but if that doesn't work, then we're talking open heart surgery.
3. I'm starting a new medicine tomorrow because the other 2 that I've tried this time haven't worked.

Yeah. Sucky.

I'm not exactly sure how one is supposed to put this all in perspective. I got nothin' right now....just numb, oh thank you dear finder of happy pill molecules :)

I guess I need to give an update on my health. Since July of last year, I've tried Prednisone, and when that didn't work, I switched to Cyclosporine. I actually stopped taking that medicine about 2 1/2 weeks ago because my most recent 24-hour urine showed very little improvement, and we should've seen something by now if it was working.

So, I took a couple weeks off of the drugs...trying to figure out what I'm going to do. The worst part in all this is that both my nephrologist and ob/gyn are advising me against having any more children, and that's just something I can't wrap my head around, or accept, I guess. I went through some anger, some denial, and some grief...all the usual emotions. I mean, essentially to me, it felt like the loss of something...the loss of the possibility, the loss of the family I always imagined...the loss of a sibling for Izzy. I don't know, I still can't make sense of it all, but I DO know that, deep down, I truly feel that my body can do this one more time. All of the risks that have been presented to me are the same risks for any pregnant woman, I'm just at a higher risk..but how high no one can say. Am I supposed to just give up? Am I being selfish for thinking that there's no way in hell I'm gonna let this dream die without a fight?

At this point, if THIS drug doesn't work, then there's not much else that can be done. I have a 50% chance of going into renal failure in 5 years, and then if I make it to there, then my risk jumps to about 80% that I'll go into failure within 10 years. Not good numbers. But here's the thing: there is nothing I can do, medically at this point, to change the course that I'm on. Nothing. So what...do I just live in fear for the next 10 years...waiting for the other shoe to drop? That seems like a pretty shitty existence, doesn't it? And I just want to scream because I FEEL PERFECTLY NORMAL!!! Especially since going off the meds....my energy level is slowly starting to rise, which is great! But now, back on the meds, and back on a low dose of prednisone. I'm praying that I don't have any side effects from it (especially at this low dose) but I'll just have to wait and see. If this doesn't work in 3 months, then we're done with it, so that's not too much time. Plus, that'll give me some more time to convince my doctor's that my body can carry another baby perfectly fine :) Keep your fingers crossed for me, ok?


Lena Lilleas said...

Hi Jenn,

It saddens me to read about everything that´s happening to you. I´ll keep my finger crossed that everything works out to the best for you.
Big hugs, Lena

Andrea said...


I don't even know what to say to you. I ask myself why these awful things keep happening to our family but I still have no answer. Even though threw the years we haven't been real close I have always looked up to you. You have inspired more over the last year to find myself again and for that I thank you. You are probably one of the most wonderful people I know and love. You have made such a wonderful family with Jocaim. I was devistated when I found out about dad and then grandmas surgery, your illness and now Ive been diagnosed with severe depression and severe anxiety disorder. I feel like Im going crazy and want to fix everything and everyone, I just dont know how. I think about you everyday even if we don't talk much anymore and I love you very much and hope that you will lean on me the way I leaned on you when I needed it the most. I still do but right now I don't want to burden you with my problems when you are dealing with your kidney disease, I want to be here for you. Again I love you very much!!

Sarah said...

Jenn, you know I can sympathize with crappy family health news. I'm very sorry to hear that. You are a strong, inspiring woman (even when it doesn't feel like it), and Izzy is so lucky to have you for a mommy. If there is anything at all that you need, you just give me a holler. :)

Jill Yegerlehner said...

I don't have your kidney disease but I've felt the awful feelings of not thinking I could have children. I'm thankful everyday for my girls and never in my wildest dreams think that I would have them. If you know in your heart that you will have more children - it will happen. By some sort of miracle - it will happen. Like you said about the parents in hospital - you have to have hope, because without that we have nothing. I'm sorry you have to go through all of this. Really sorry. It's alot for one person to have to burden. Thank goodness for Joacim. Thank goodness you have Izzy too to keep your spirits up - she's a blessing. Please know I'm putting you at the top of my prayer list...
Love ya!