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Not Happy Posted February 21, 2013 by Jackie Dooley

10

sorrow

The latest blood results came back with an elevated something or other related to Ana’s liver function (Jim spoke with Maria – the physician’s assistant earlier today). Maria said that the value is still within normal range, but it is up from the last time they drew blood (on 2/14). Ana needs to get blood drawn again tomorrow – which she will do at our local family physician’s office in New Paltz. Unfortunately we won’t get the results until (hopefully)  Monday. If the value is still high, then she will need to get a needle biopsy of her liver done on Tuesday. This is already scheduled, with the hope that we can cancel it if the blood test results come back favorable.

Not. Happy.

Ana’s also clearly retaining fluid in her abdomen which is quite distended. She is no longer draining fluid because the hole that was draining closed up (a normal part of recovery). However, this much fluid is not necessarily normal and is considered a complication. It poses a risk of infection and it’s also pretty uncomfortable for Ana right now. She was up two pounds since yesterday when she weighed herself this morning.

Not. Happy.

The tiny bit of icing on this crap-cake is that Ana’s doing really well with the low sodium diet. It turns out it’s not really that hard to stick with if you actually read food labels and cook meals at home. She’s even keeping a sodium journal of everything she eats (she loves making lists.)  Jim and I have never really been much of a team in the kitchen (he cooks, I eat. he doesn’t cook, we eat out). But Ana loves home cooked meals and she’s really enjoying the process of discovering recipes and trying them out. And, weirdly, I’m finding that I’m not as afraid of the kitchen as I thought I’d be. Those of you who’ve known me longest (Mary) will likely be more amazed about THAT fact than I am.

Anyway, back to blood test results and ceaseless worry. I’ve read that most liver transplant recipients experience at least one episode of rejection within the first year after transplant and that, for the most part, these rejection episodes can be reversed if caught soon enough. This is why Ana gets tested each week. The first few months after transplant are the most critical. Even though we know this – even though I KNOW THIS – I am still desperately, inconsolably afraid. And because of that I’m having a hard time shutting down the mechanism in my brain that wants to completely freak out right now.

I know I have to try. I’m not sleeping. I’m not relaxing. I’m making Ana upset. I’m fighting with Jim. Every nerve ending in my brain feels hyper sensitive to every sort of stimulus. I’m jumping at noises, snapping at minor infractions, staring into space…far…too..much. I’m waiting, waiting, waiting for the final shoe to drop. I wanted to crawl under my desk today and hide. Literally.

I’m absurdly emotional and depressed.

I am not okay. But what can I do? I have no choice but to be strong for Ana.

 

10 Comments

  • Kiku Collins February 22, 2013 at 11:34 pm

    Sent you a long winded email – but sending you extra, extra, extra love. Stress is a real bitch – try to find a moment to breathe. Find a way to remove yourself for even 20 minutes – longer if you can. Meditate. Have a glass of wine and read a vain magazine. Whatever it takes. Go window shopping. Find a place to scream (we have our studio – I suppose you might have that too?) Love you guys. xoxo

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  • Mary-Ann and Natasha February 22, 2013 at 6:44 pm

    Hi Jackie – what you are feeling is perfectly normal given the roller coaster you have been on for almost 6 months. It is OK to be frustrated and desperate and not positive and out of control. Try and do any of the things that the folks before me have suggested but also understand that what you are feeling is valid and give yourself permission to grieve for the dreams you had before and when you can, to dream new dreams. This is such a challenging time and really stressful.Lean on anyone you need to. Let people around you care for you so that if you do need to be under your desk, it is a safe haven and not a deep dark place. Do what I suggest to the children I work with – make a safe place for yourself with things you like to look at and to feel, to read or to watch, and withdraw there to take some breaths when you need to. Take care of yourself and love to Ana and Jim and Emily. Natasha misses Ana. Mary-Ann

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  • Susan D February 22, 2013 at 11:24 am

    It sounds like the medical team at New-York Presbyterian is keeping so much on top of this, with the tests. While waiting for the test results is very, very difficult, I am sure, I always remind myself that they do these tests so they can keep on top of things and head them off. Last night, I also kept thinking about the high, high success rate of that liver transplant team.

    I hope you avail yourself of whomever you need to lean on — counseling, Jim, family, dear friends. Keep flooding your mind — it’s called mind-storming — with positive images as much as possible. And ultimately, I would take this cue from Ana, who has that inner wisdom and spunky nature that keeps blowing us away — she is making lists, taking charge, researching, writing. (I think she picks this up from her folks!) Allow yourself to get right in there with her: Picture which vegetables and fruits you all will grow and savor in Jim’s garden in the spring, when you will go to the frog pond, which movies are coming. Whatever it takes to engage your mind as much as possible.

    This is so hard, but Ana is truly on her way to healing. As the phrase goes and as we see — even in her daily actions – we gotta believe.

    Love from Susan

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    • Susan D February 22, 2013 at 11:25 am

      Please send my love and good thoughts to Jim. I always want to know how he is doing each day. I am so glad that he is cooking those home-cooked meals and that you are getting into the kitchen, too. Wow!

      Reply

  • Nita February 22, 2013 at 7:40 am

    Jackie, I’m glad someone in your family (Judy) has suggested Xanax. Would you also consider some kind of counseling for yourself? Does the transplant team provide such a resourse? It sounds insensitive for a stranger like me to suggest this to someone I don’t know, but since YOU acknowledge that you’re ready to burst, I hope you’ll listen to the cue. There is no weakness in finding additional strength from outside yourself.

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  • chloe Sommer February 22, 2013 at 6:24 am

    I feel soooooo terrible sad for you ,nobody can truly know the pain the you are going through ,unless you have been through the exact same thing ,but I can only imagine.. I think it is good for you to write all these feelings down to let people know how you feel .We feel with you . Maybe it helps just a little bit to know you are not alone ,I hope so . I will keep praying for Ana

    Reply

  • denise dibella February 21, 2013 at 11:29 pm

    Moms worry. Its our job. I feel for you, this whole situation sucks. Sometimes you just cant help but let your emotions take over. Your entitled to blow off some steam and bite someones head off once in awhie. You have been on quite a rollercoaster ride since August and you have handled it remarkably. YOU ALL HAVE. Just know there are many people praying for all of you and for Ana to come out on the other side of this. HEALED.

    Reply

  • Larry February 21, 2013 at 9:19 pm

    It sounds so trivial so please forgive me but just keep writing. With every word you process a little piece perhaps without even realizing it. Much love to all of you.

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  • Judy Krongard February 21, 2013 at 9:16 pm

    Go to the gym and do some exercise. listen to music. meditate. No, scratch that..go to the gym and take one of thoose spin classes… It will release some nice endorphins and help you to sleep. If you think you need a sleep med short term get one. Try (I KNOW it’s hard) to take things day at a time. Take a Xanax if you are about to flip out..that’s what they’re for…Look, I worry too…(I just bottle it all up and get an ulcer.) .you are dealing with things as they occur with Ana..she will be ok because you and Jim will make sure she’s ok…PLEASE take care of yourself…don’t make me hit you…I love you..Mom

    Reply

  • Lisa Krongard February 21, 2013 at 9:03 pm

    just another bump in the road kid hang in there

    Reply

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