Worry. Is that my new middle name?? I thought I was used to the ups and downs by now. Maybe I never will be. It has been a down week. Fortunately Scott's last 2 biopsies were a 0 and a 1. Just fine according to the transplant team. Something else is going on though. Scott has next to zero energy. He sleeps most of the day. It's as bad as heart failure. He is weak and listless. He manages okay when he stays home and lays down most of the time but if he ventures out he is completely spent. He went out to get bloodwork done yesterday and hardly moved after that.
Something is definately wrong!! His kidney function has been steadily decreasing during the last 2 weeks and his EBV levels are higher than they've ever been. EBV(Ebstein-Barr Virus) is what causes mononucleosis. I've read that over 90% of the population are EBV positive but most people never have any symptoms. Because Scott is immunosuppressed his EBV levels are regularly monitored because they can escalate out of control without a normal immune system to keep them in check. He has also stopped prednisone which can cause withdrawal symptoms.
What is going on??? My overactive, worried imagination is getting out of control. Add to that some scary internet research and statistics and I'm feeling moments of sheer panic. The medical team is aware. But they don't KNOW what's going on either. I decided to write out these worries with the hope of seeing everything rationally and keeping my panic in check. My biggest worries are:
1)kidney failure again -> dialysis -> kidney transplant
2)EBV has been linked to some cancers in transplant patients
3)rejection - ALWAYS rejection
There they are - in black and white. I admitted it. I'm terrified. I don't want to do the hospital again. I don't want to get back on that ride. There it is. Out there for anyone to see. Maybe I'm not as strong as others think. Maybe everything will be fine - maybe it won't. I hate not knowing. Whenever I let myself think of it I feel a squeezing in my chest like I can't get enough air. PANIC. Then I take a deep breath, slow my breathing and try to think positively. I can do this, I can do this, I can do this. It's going to be okay. It's going to be okay. Right??
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I'm so sorry for your terrible worry. I've followed you and your family for a while now, but have never written before. I know people say you are strong.... you are just human. No different from them. Sometimes I think people say these things because they feel it somehow distances them from the possibility they could live the same fears. All the best thoughts and prayers go out to you and your beautiful family. I see Scott and you and your family and it gives me such hope and joy that my 7 year old son with a DILV will one day have a wife and children to love and be loved by, too. Thank you for writing!
ReplyDeleteOh Melanie. You're in our prayers!
ReplyDeleteScott & Melanie,
ReplyDeleteI'm keeping both of you and the kids in my thoughts and prayers.
I'm sure they will get to the bottom of Scott's issues.
Most importantly, do NOT lose FAITH!!
I love this quote ~ Without faith a man can do nothing; with it all things are possible.
My2ndHeartBeat
Mel, We are always thinking of you guys! We hope for the best, and your in our prays!
ReplyDeleteMel, worry is a natural part of a disease. We have not had a day since we found out about my heart failure that we have not worried; however, surely you don't want to live your life that way... So the solution??? Live each day as well as you can and try to push that panic out of your thoughts. It is good to be educated, but perhaps you need to limit your internet research and balance it with stories of hope. Remember that you have come so far. Sometimes I feel as though I just cannot think of tomorrow because I am too afraid what it might bring. But live in each day and make new memories. Eventually the fear lessens a little... but it will always be there. Shows you're normal! LOL
ReplyDeleteYou and your family are in my thoughts and prayers.