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Thursday, October 29, 2015

The Road is Long and Winding

Hello World!

Well a little medical update.....

 I had a whirlwind of appointments this month. I had CF clinic. It went well. I weigh the most I have ever weighed in my life. Which is bittersweet. I love being healthy but adjusting to seeing myself at a heavier weight is taking some getting used too. My lung function has been stable for months now. It hangs out in the 70s. After 3 times of pneumonia I wonder if it will ever get any higher.

I had a check up with the Kidney doctor, since last winter during one of my pneumonia spells my creatine levels hit a very high 3.5. Now normal levels are less than 1. For the last few months I've been stable at about 1.5-1.7. While those levels are still elevated... they are staying stable. Percent wise it works out to roughly 40% of my kidneys are functioning properly. Now kidney function loss is VERY common with lung transplant patients. The anti-rejection meds you are on, mostly Prograf, really do a number on your kidneys. Its very common that lung transplant patients also need a kidney transplant. So I've already been warned that that is in my future. We just don't know when. With my kidneys being at 40% the only real problem I've had is potassium control. My kidneys don't seem to process any potassium. I manage it mostly by a diet change. I'm a lot more aware of what I'm eating. And when my levels get high, there is medication to take.

On the diabetes front I think I'm actually making progress! I was diagnosis in 2005 with CF related diabetes. Now thats not type 1 or type 2. I am not insulin dependent - never have been. since 2005 we have never figured out a regiment that works. I have tried every kind of insulin thats out there. HOWEVER I have been trying to tackle the blood sugar game recently and all my check ins have been coming back in the normal range. I'm starting to think my pancreas just woke up and started doing its job. I go back to clinic in a month or so, so we will have to see what the professionals say then.

I did have my consultation with an OB-GYN. It went exactly how I expected it to, but not how I was hoping it would. Everything they said to me, I already figured on. My situation is a little complicated. But deep inside I was hoping for a glimmer of hope. I didn't get that. As I thought, its not recommended that I carry a child. Before you get on your soapbox and preach to me about adoption and other options for having children - I KNOW! Its not the point though.

I have always wanted children, life isn't complete without them. One of my main reasons for going through transplant was the possibility of children. Cause at 21/22 I had accepted dying young. I accepted not living a FULL life. I've said it before, at 21 I've already experienced so much,  yes I know its young, but its older than some CFers ever get to see. And in those 21 years I had lived a lot of life. So I made peace with dying young, I by no means was giving up, but I was ready to accept whatever was coming. And I knew without a transplant children were not an option in any way, I was struggling to take care of myself! If I had to pin point 1 reason why I did transplant, it would be that, children.

So I'm not ready to admit defeat.... not that its defeating, more deflating. Its easy to sit here and type with tears rolling down my cheeks about it, but outwardly talking about it with anyone other than Brian just can't happen yet. I'm willing to talk to other Drs -  more than 1 opinion is always a good idea. Then Brian and I can decide whats best for us. Right now, I don't have a clue what that is. Part of me says - Fuck it, What do they know? They don't know me. I came back from a coma? I survived a lung transplant? who do they think I am - But thats angry/anxious Jessi. Calm/level headed Jessi knows its not just about ME anymore. Making crazy choices and taking crazy chances affects way more people now. In a way it puts a lot of weight on my shoulders. But at the same time I have Brian standing next to me ready to shoulder some of this weight.

I know what will be, will be. I like to think I'm a patient person, however I know I'm an instant gratification person. I'm learning. Everyday. Sometimes it would just be nice if life and I were on the same page or even in the same book. And don't get me wrong, I bitch about a lot of stuff but I fully understand how grateful I am to even bee here today having this problem. Its just hard.

Anything worth having, is worth fighting for.

Breathe Easy

1 comment:

  1. This is so honest, poignant, and well-said! I admire you from afar (but not TOO far for a visit some day) Keep up the positive thoughts! Elisa