AST = Aspartate Aminotransferase – An enzyme, low levels of AST are normally found in the blood. However, when an organ like the liver is damaged, additional AST is released into the bloodstream. The amount of AST in the blood is directly related to the extent of the tissue damage (it’s not clear to me what “damage” actually means). Normal range for this is 0 – 44 IU/L – Ana’s is 23 (it was 193 on 5/15!)

ALT = Alanine Aminotransferase – An enzyme, ALT is found mainly in the liver, but also in smaller amounts in the kidneys, heart, muscles, and pancreas. Low levels of ALT are normally found in the blood. But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage. Normal range for this is 0-28 IU/L – Ana’s is 101 (It was 277 on 5/15).

GGT = Gamma-glutamyl transpeptidase – An enzyme present in our blood, organs and tissue that rises when there is a problem with bile flow in the liver (I think they all rise when there’s an interruption in bile flow because any kind of liver damage/disease, effects bile flow). Normal value is 5-55 IU/L. Ana’s is 169 (it was 210 on 5/15).

My sense is that all three tests must be done to gauge if there truly is a problem with Ana’s liver. In this case, the “damage” is a result of inflammation due to rejection which causes increased production of all the above enzymes and is a type of marker or red flag for the doctors who then order a biopsy to confirm this.

So, enzymes going down = the right direction! Rejection causes liver inflammation – a result of Ana’s immune system attacking her liver – which is why they pumped her full of steroids. Since her enzymes are going down, Dr. Martinez decreased her prednisone to 40 mg/day (from 60 mg) which is good because she is uncomfortably hungry on such a high dose of prednisone. She won’t need her labs drawn again until Tuesday! (It would’ve been Monday but we figured the lab would be closed for the holiday). Isn’t it funny how you have to put your health on hold whenever there’s a holiday?

Ana went back to school yesterday and is fully in the swing of end-of-year activities at High Meadow. I was really relieved to hear that she didn’t need labs until next week because tomorrow is her school’s dance performance and she’s in three dances. It’s really hard to believe that she was in the hospital on Thursday and Friday…and she’ll be dancing tomorrow night.

She’s loving every minute of the hectic end-of-year stuff. She truly appreciates being caught up in the routines she’s come to know and love. It’s a joy to see her so happy (and the best birthday present I could hope for…my birthday is Saturday).

The actual weather outside is completely irrelevant at the moment. As far as I’m concerned, the sun shines brightly.

Yesterday, right after my dismal morning post, I called the service at Columbia to ask about Ana’s stomach ache and nausea. I wasn’t going to bring her back to the hospital unless they felt it was extremely dire, which it didn’t seem to be (she was just very uncomfortable).

Patricia (the Physician’s Assistant) was on call and she checked in with Dr. Martinez and they decided to prescribe an antibiotic for Ana. They thought it sounded like she picked up a hospital-aquired bacteria called C-difficile (based on her symptoms). This type of bacteria is apparently associated with antibiotic use. Ana didn’t actually get an infusion of antibiotics (but she had gotten one when she went into the E.R. on 5/4). It’s treated with another type of antibiotic.

Of course the minute I hung up with Patricia, Ana started feeling better. By the time Jim came home with the antibiotic, she was moving around and teasing the cat.

Her appetite didn’t really come back until dinner time, when she ate her weight in fried rice (she’s down a few pounds again). By bed time, she was her normal, silly self. She’s a little disappointed that she’s now taking almost as many pills as she had right after her transplant. She said it makes her feel like a failure. But she’s trying to stay positive – she even made this little guy (and then devoured him):

We call him Evening Med Man. There’s also a Morning Med Man.

I’d planned to bring Ana and a few friends to the Poughkeepsie Mall today for a birthday “mall walk” – this is in place of a big party since she got a phone for her birthday (we really felt like she needed it so we can remind her to take her meds when she’s not with us). So, lookout Poughkeepsie Mall, I’m about to unleash four tweens on you.

There is a small percentage of people that don’t respond to this initial treatment (intravenous steroids and an increase in anti-rejection medication). The next step would be to treat her with a more potent drug that would require a seven day hospital stay, but apparently it’s pretty rare for them to have to do this.

Since the odds haven’t exactly been in our favor in the past, I’m worried about this next possibility. Adding to my overall anxiety is the fact that Ana’s not feeling well again. She’s nauseous and has a lot of stomach pain. She was feeling completely better before the treatment – I don’t know if it’s a relapse due to the suppression of her immune system or a reaction to all the medication running through her system.

I’m really starting to understand the significance of that expression, “The cure is worse than the disease.”

I just want her to feel better. I’ll post another update tomorrow.

“Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home”

- from “Home” by Phillip Phillips

It’s not like I can sleep at the moment, so I may as well update the blog. Ana had her biopsy at around 11:30 today and was released from the hospital at 3:00 without incident. Dr. Martinez managed to get the biopsy sent to the lab by 11:00 a.m. so we’d get the results today (she had someone literally walk it up 14 floors because the elevators can be so slow). Dr. Martinez has crazy good instincts. There’s a reason she had that guy run up 14 flights of stairs.

Ana was in good spirits. We made good time and got home around 5:00.

We had a few people over, a nice big cake and Ana got her birthday party after all. But ten minutes before everyone got here, Dr. Martinez called and said that she was in “moderate” rejection and strongly advised us to bring her back to the hospital for treatment tonight. I watched her joyfully eat cake and laugh with everyone – all the while KNOWING I’d have to break the news to her when everyone left.

She literally went from laughing and hugging me, to sobbing in about sixty seconds. It was one of the worst moments I’ve ever experienced as a parent – and I’ve been through some bad moments.

I called Dr. Martinez back and got the on-call physician’s assistant (Patricia) and asked if we could wait until tomorrow, so that Ana could at least spend the night at home. But her level of rejection is fairly high. It’s 8 out of 10 on whatever obscure rejection scale they use to measure these things. She’s had elevated liver enzymes for three weeks. She needs to get treatment with intravenous steroids tonight and again tomorrow. Her medication will be adjusted (likely an increase in prednisone).

Patricia explained that it’s very common for children to have rejection episodes in the first three months after transplant. In fact, 80% of them do. Children tend to do better in the long run if they have a rejection event like this. I’m not sure why, but I think it’s related to having a healthy immune system. Children also have ferociously strong immune systems which means they are more prone to rejection than adults.

When we were still at the hospital, Dr. Martinez didn’t seem to want to explain what would happen next based on the biopsy results. Her approach seems to be to provide information on a need-to-know basis. Why get Ana (or me) upset if it’s not rejection, after all? When I tried to clarify what would happen if the results were positive, Dr. Martinez said she would need intravenous steroids and she’d likely have to be admitted. When I started to explain to Ana that this might happen, Dr. Martinez interrupted me and said, “But there’s no way of knowing that will happen. We need to wait for the results.”

So, consequently, I stopped talking to Ana about this and worried internally, then when we got the call from Dr. Martinez, it had to be a fucking emergency situation – again.

You know what? Please don’t shield me from what might happen because you don’t want to answer my questions, or you are trying to protect me from anxiety or whatever other doctory reason you have for withholding information from me. Set your ego aside. I have to UNDERSTAND every nuance of the reality that I’m dealing with. So it just made everything ten times worse when the worst case scenario happened and Ana had to go back to the hospital straight from her own birthday party.

Is it too much to ask to be treated like a grown up so that I can PREPARE my CHILD? I really wish Dr. Martinez could’ve heard the level of Ana’s despair today. LET US KNOW WHAT’S GOING ON IN ADVANCE. I love and trust Dr. Martinez, but I am tired of trying to guess at what’s happening all the time.

You know what the hardest part of this whole thing has been – well, besides the fear that Ana won’t survive? It’s having the important moments ripped away - the things that made me happy as a mother. Planning a birthday party. Being able to take care of my own child when she’s sick. Saying “everything will be okay,” and meaning it. It’s time and time again of not being able to make it better.

A ruined birthday is not that big a deal if you’re saving lives, I guess. But to Ana (and me), it’s yet another reminder that we’re navigating hostile territory. The burden is so heavy. I can feel it dragging me down.

Ana has to have a biopsy tomorrow. A birthday biopsy.

Ana’s lab tests from Monday showed elevated liver enzymes again and she’s also been sick for the last two days with a stomach bug. We’re also still not sure if she is positive for EBV (epstein-barr). Her lab tests from 5/4 (when she was admitted to the Kingston ER) came back positive for EBV, but her tests from this Monday came back negative. False positive or false negative? Who the hell knows. Dr. Martinez wants to make sure Ana’s not having any rejection issues, given all of the above.

Ana was very, very upset that she’d have to spend her birthday in the hospital getting a biopsy. What could I say? I cried with her. I’ve always gone way overboard for both  the girls’ birthdays and I hate that I can’t make this a special day for her.

I think we’re lucky for a lot of reasons. We’re in good hands at Columbia and they’re being cautious (which is a good thing). She’s three months post-op and doing well, for the most part. She was given the wonderful gift of a liver and a second chance at life. A birthday is just a day. She’ll still get presents and a cake.

Tomorrow will be hard, but we’ll get through it. I’m going with her and Jim is staying home with Emily. Ana and I have to hit the road no later than 5 a.m. so we can get to the hospital by 7 a.m. She’s scheduled for the biopsy at 9 or 9:30 and the procedure takes about 20 minutes. She’ll then be in the recovery room for four hours. They will most likely let us go home as long as everything goes smoothly in recovery (so prayers and white light, please).

There is a precariousness to our lives that is exhausting. There is absolutely no way to plan for anything. I’m afraid to say she’s doing well because I have no idea if she’s doing well, or how long she’ll be doing well before the next crisis.

I know control is mostly an illusion, but it sucks to be reminded of that every other day. But, bottom line, I’ll spend the day with her on her birthday. I’ll try to make her laugh. Hopefully we’ll be home before dinnertime tomorrow.

I used to separate my role as “mother” from all my other identities – business owner, daughter, sometimes cyclist, writer, school board member. All of the hats I wore seemed to conflict with each other, scrambling to be A #1 on my priority list. But that changed when Ana got sick.

It started with the well wishes and donations that came pouring in from the many different circles of my life. First the front lines swept in – family, friends, neighbors, parents and children from Ana’s school. But then an amazing thing started happening – A client I’d only met in person twice showed up at the hospital with presents for Ana, a few women who I’d cycled with put together a care package for her (filled with lots of nutritious granola bars), gift cards for gas and food poured in from everyone. A school-wide yard sale happened, helping us survive the entire month of October.

And it kept coming. The love, the help, the prayers.

A correctional facility forty miles away put Ana’s picture up on their bulletin board and raised over $2000 for her – they delivered both checks personally to our family and gave Ana a signed t-shirt from all of the officers which she still wears to bed at night.

A supermarket that we used to go to every Wednesday night (as a family) put up Ana’s picture on the cash register and, with the help of everyone who shops there, quietly raised nearly $4000.

A karate instructor who is also a musician rallied the members of his dojo in support of our family – he pulled in all his connections, all of his friends, reached out to our family and put on one hell of a show back in November that raised over $3500.

A childhood friend of Jim’s sent us a very big check.

A best-selling children’s book illustrator drew a picture of Ana and tried to visit her in the hospital to draw for her (he got lost, but he ultimately visited her and her classmates at school).

A woman I barely knew became one of my best friends. She made us quiche and took care of Emily while Ana was in the hospital.

A woman I barely knew became one of my best friends. She brought me mocha and Ana French fries while we were stuck in the hospital (time and time again).

Yesterday, when I took the girls to a rushed lunch at a diner in New Paltz, someone quietly paid our bill and left, without saying anything.

There are so many more examples.

I haven’t been able to reflect or say thank you as much as I want. I didn’t understand how the people in my life – whether they played a big role or a small one, could become the force that holds me up, allowing me to be the mother I’ve always dreamed of being.

It’s heartbreaking that Ana had to go through hell in order for me to realize this. This heartbreak persists even through moments of joy and relief. It’s a burden of motherhood that we cannot perpetually prevent sorrow or pain – as much as we wish we could.

We are given these lives to protect and love and, often, this happens behind closed doors. We make them breakfast in the morning and kiss them good night at night. We match their socks and plan their birthday parties. We watch them grow and hold our breath, hoping that they will someday learn to fly on their own and be happy forever and ever.

If we’re lucky, we never have to hold their hand before surgery or change a surgical dressing, or learn how to flush an I.V. line. But sometimes we’re not lucky, and so we just do it.

Today Ana is home and feeling good. Emily is happy and already awake. She couldn’t wait to give me my Mother’s Day gifts (a hand-made card, a rap song she wrote, and a paper mâché penguin that she made in school.)

I’m not enjoying this day alone, and I’m not taking it for granted. I understand that “mother” isn’t a mutually exclusive role from every other identity I associate myself with. I didn’t get that before – not really. Today I have my penguin, my handmade cards, both my girls home and the knowledge that you’re out there – hopefully planning a great day with your own families. It’s definitely the best Mother’s Day ever.

“I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is ‘Who in the world am I?”

Alice, from “Alice’s Adventures in Wonderland”

Ana went back to school on Monday and seems totally fine. The fever that landed her in the E.R. on Saturday night left as mysteriously as it appeared. Her labs all came back negative for viruses and infections, although I’m not 100% sure they are all back yet. Her liver enzymes were still elevated and the main reason I haven’t updated the blog is I was waiting for the results of her latest bloodwork – drawn this morning at Benedictine Hospital (I took her there instead of Dr. Denno’s office because we get the results much faster since they are processed right in the hospital).

The good (great) news is that Ana’s liver enzymes are going down again and she won’t need to get a biopsy this week. She will need to have labs drawn on Monday as usual.

I’m definitely relieved that she won’t need a biopsy this week, but I’m also not feeling particularly enthusiastic right now. I’m still fighting a bad cold, and I just feel very run down – physically and mentally. Plus I’m worried.

I have no idea why she spiked a fever and I can’t stop worrying about it. What can it mean? What will next week mean? What about next month? How do I wrap my arms around the size of this?

I don’t know how to navigate the new post-transplant landscape where rules change every day and even the smallest things – like fevers and head colds – are bigger than me. I used to be able to handle these things with hugs, tea and maybe some motrin. But now I have no idea what I’m dealing with, and motrin isn’t good for her kidneys so I don’t even have that anymore.

I thought May would be a month of optimism and renewed energy. But I feel like I’m struggling forward, taking big, slow steps through thick sludge that sometimes lets up, but then pulls me back in. I think it was easier to be optimistic before the transplant, when I could idealize her recovery. The reality of infection, rejection, hospital visits and complications didn’t factor into that fantasy. I think there’s a part of me that thought it would all be over – finally – after the transplant and we’d just push forward, leaving cancer and hospitals far behind us. There’s a stubborn part of my brain that still won’t accept that this is all happening to Ana (has happened to her).

I need to let it go and be grateful for each moment – the way I know Jessi did.

Friday was spent at Columbia getting tests (the chest x-ray and ultrasound I mentioned in my previous post). Then we THOUGHT we were clear of drama, and had the entire gorgeous weekend stretched out before us.

But yesterday Ana got very tired again, and at around 5 p.m. or so, she begged to go home and lie down (we were walking around Saugerties). She looked ghastly pale, and was shaking uncontrollably. When we got home I took her temperature and it was 103.5. I immediately called Columbia and the hepatologist on call – Dr. Ovchinsky – told us we’d need to take Ana to the ER. A fever that high could mean sepsis and her last labs were drawn nearly a full week ago.

Dr. Ovchinsky grudgingly agreed to let me take Ana to the Kingston ER for bloodwork and possible I.V. antibiotics (my goal was to avoid driving all the way to Columbia just for lab tests and I.V. fluids). It was a painful reminder of that long ago day when I took Ana there for stomach pain that I thought was appendicitis, but turned out to be a giant tumor on her liver. As we walked towards the hospital entrance, Ana began to cry. She knew they’d draw blood and hook her up to an I.V. But I said, “Ana, you are not the same person who visited this hospital eight months ago. You know what to expect. You are informed. You’ve totally got this.”

She didn’t agree with me as we walked in, but I will say that her behavior and composure at the hospital was amazing. She asked the nurses questions, held perfectly still when they put the I.V. in and insisted on doing all the various flu/viral tests they needed herself (most required she swab her nose and throat with a long q-tip). She made me proud.

Dr. Stapleton (the ER attending) initially wanted to transport her to Columbia and I told him to call Dr. Ovchinsky before he did anything (he’d started ordering labs and I stopped him and reminded him to call Columbia first.) He finally did this and ended up being an instrumental part of the excellent care she received yesterday. Dr. Ovchinsky ordered intravenous antibiotics in case of infection, and Ana was put on I.V. saline (which I really think is the default hospital setting for all ER visits). I’d given her Tylenol right before we left the house and her fever responded to this.

The decision to transfer her hinged on the lab results, which came back at about 10:30 looking great. Dr. Stapleton said she’d be discharged within the hour (joy of joys). I was updating a bunch of you via Facebook, but unable to post all of this to the blog. The nurse said it was kind of a miracle that they were able to get the lab results so quickly – apparently the hospital was in the process of switching over to a new computer system on Saturday night and they were having trouble getting labs for pretty much every other patient. She said, “Ana must have a guardian angel looking after her tonight.”

And I believe she did.

At around the time we were in the hospital, Jessi Hilborn passed away. I didn’t know Jessi very well. She was only 29 and had one young son who she adored. She had her transplant a few weeks after Ana and we’d messaged each other privately a few times on Facebook – exchanging information and asking questions. Even in the short time I knew her, I recognized how remarkable she was. Like Ana, Jessi was surrounded by a large community and support network of friends and family that loved her fiercely. Her transplant was supposed to give her a new start on life (she’d been sick since childhood with liver disease).

Instead she went into acute rejection and died in the ICU. She was friends with Ana on Facebook and had read this blog. She knew Ana, and I feel strongly that she was looking out for Ana yesterday.

My thoughts and deepest sympathies go out to Jessi’s family.  Our paths crossed only briefly and I’m mourning the fact that I’ll never get to know her as much as I’m mourning a lovely life cut short by liver disease.

I know your thoughts and prayers also helped us yesterday. We were never alone. I know you’ll be with us for the next ER visit too.

Ana’s temperature was completely normal today, but she’s not completely out of the woods (the woods are long and winding on this journey). I spoke with Dr. Ovchinsky today and she said Ana’s enzymes (AST/ALP) are elevated compared with a couple of weeks ago, and Ana will need more labs to check them again on Tuesday or Wednesday of this week. If they’re still elevated, then Ana will need a liver biopsy.

Liver transplant recipients typically get four to six liver biopsies in the first two years following transplant. It’s going to happen sooner or later. They need to do this to determine whether she’s in rejection, or experiencing an infection. It is an outpatient procedure which takes about four hours total and would be done under general anesthesia (the procedure itself is probably a lot less than four hours since she won’t need to be intubated). Rejection and infection can both be treated. What Jessi had was graft versus host disease (GVHD) – a complication where white blood cells in the donor organ literally attack the host’s body’s cells.

It was a sobering and exhausting weekend. Emily and I woke up this morning sick with a bad cold (I think mine might be a relapse from last week’s flu/fever thing). Ana’s actually feeling great and had no fever today. I spent this gorgeous day dragging my exhausted, sick self around and feeling alternatively sad about Jessi, glad that Ana is doing better and frustrated that I’m still not back on my bike again. I keep trying to get back to some kind of “normal” and I just…keep…failing.

The one bright point of this entire weekend was that Emily competed in her very first karate tournament – and won first place in her division! Her victory was a bit overshadowed by Ana’s ER visit (understatement) so I feel very bad about that too, but I do want to say that she also made me very proud this weekend. I know how lucky we are to have each moment – and there’s always next weekend, I guess.

And, here she is in a karate pose while wearing a pretty dress AND her medal (which she refuses to take off).

We dropped Emily off at school and headed straight for the hospital.

We got to Columbia at about 11 and Ana got an ultrasound of her entire abdomen which lasted an excruciating hour. She hates this – it’s just a lot of poking and prodding. It was the most stressful part of the day for all of us. It brought back horrible memories of the PICU for me because she had to get these ultrasounds every day. They were checking for a recurrence of the portal vein clot that sent her back to the OR the day of her transplant. I have no idea what I’m looking at when I see an ultrasound, which makes it even more excruciating. I end up staring at the screen imagining phantom horrors (is that a clot? what’s that big shape? why did the technician stop? is she not telling us something? why is this taking so long?) I kid you not – it’s sixty minutes of unrelenting doubt going through my head while looking at something as meaningful as an ink blot.

I totally see a blood clot in there, don’t you? Anyway, I won’t keep you in suspense any longer. Her ultrasound results were great. Her liver looked good (can’t you tell?) and the blood flow was perfect. So – big sigh of relief. She then got a chest x-ray and that was also good meaning that her lungs were clear and she didn’t have any other issues. I’d read that prednisone can cause joint damage which is a rare side effect…but I was worried.

We then met with Dr. Martinez and a new physician’s assistant, Tara. Dr. Martinez examined Ana and said she looks wonderful. She poked and prodded and Ana did not have any pain near her liver or even on her shoulder. Another sigh of relief. I asked about the shoulder pain/prednisone connection and Dr. Martinez rolled her eyes and said, “That’s right…you Google things.”

Of course I Google things. I’m a search marketer. You have NO IDEA who you’re dealing with.

Apparently the joint pain thing usually happens in the hips and it is a big deal (it requires joint replacement surgery) but Dr. Martinez doesn’t feel that Ana’s particularly at risk. She wasn’t on the higher dose steroids for that long and she’s on a very low dose now. So…okay.

So, the reason we had to drop everything to go to Columbia was because there were multiple issues going on with Ana – the fever, the fatigue, the back pain and the elevated liver enzymes. Dr. Martinez felt that all of this was likely due to a virus – but without seeing Ana, she did not feel comfortable making an assumption. I love this about her. Better safe than sorry. With transplant patients – you can’t be too careful.

Dr. M also explained that Ana was EBV negative (EBV = Epstein Barr Virus) but her donor was EBV positive. EBV is mono. It is very likely that Ana got mono from her donor liver and that is what she’s suffering from. The blood test she got on Monday would’ve confirmed this, but unfortunately this particular test as well as one other was rejected by the lab. Dr. Martinez would’ve preferred that Ana get more blood drawn today, but Ana hates the phlebotomists at Columbia with all the visceral angst of a pre-teen and ONLY wants to get blood drawn by Donna in Dr. Denno’s office…so we’ll get the full litany of blood tests on Monday morning.

We can live with blood tests on Monday. We have the weekend. We have Ana home. Hooray Hooray Hooray! That is the good news.

Here she is waiting for the car outside the hospital. That is a VERY content smile.

The potentially bad news is that if Ana’s liver enzymes are still elevated next week AND if she’s not positive for EBV, she may need to get a liver biopsy. And this is how things are right now.  This is life after a liver transplant. Meanwhile, this weekend is another stolen moment and, ultimately, Ana is a healthy (and lucky) little girl. Well, big girl. We stopped at her favorite mall, the Pallisades Center, on the way home and had a little mini shopping spree.

We got lucky today. I know that. But there is someone out there who isn’t as lucky and I’d like to request you direct your thoughts and prayers her way. Her name is Jessi Hillborn. I met her on Facebook in a liver transplant support group. She had her transplant a few weeks after Ana at the Cleveland Clinic. She’s 29 years old and has two little boys. She went home feeling great, but soon went into acute rejection. Her liver is actually rejecting her body. She’s also now got an abdominal infection and is in the ICU. All of this can be treated, but it is rough and scary and I know her family is hurting. So, prayers for Jessi. I am out here thinking about her and worrying and hoping that she will soon be home with her family.

We knew that this could, and probably would, happen – but it doesn’t make it easier. Jim and I are both going with Ana to the hospital tomorrow. Emily will go to school and go home with a friend afterwards. I sincerely hope that Ana won’t need to be admitted (Maria didn’t say anything about that, but I feel like that’s a logical next step).

Ana is devastated. She was just getting back into the swing of things. I’ve read that the first year after a liver transplant is the hardest – there are lots of setbacks and just when you think you’re moving forward, something lands you back in the hospital. My heart really hurts right now for Ana. I want her to be better. More than that, I want her to never have had to go through this in the first place. Some days it’s really hard to be optimistic. I’ll post an update when I know more.