Further Down the Rabbit Hole

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The rudeness of our first OB prompted me to get a second opinion. I couldn’t deal with her and her miracles. I needed someone to tell me the truth or at least act like they cared. I called into work and made an appointment with a different practice where one of their female doctors was on the Best Doctors list. She wasn’t available, but I got a last-minute appointment with a male OB-GYN. I’d never seen a guy for “those” appointments, but I didn’t care.

He easily spent 40 minutes with me. He performed the ultrasound, not a tech. He confirmed that our baby wasn’t developing correctly. He made sure that I understood everything he was saying. He was horrified at the way the first doctor had treated me. When Pete arrived at the end of my appointment because he couldn’t get off work, the new doctor explained everything to him again too. I was told to wait two weeks to miscarry naturally, and then we would go from there. When I wasn’t at work I was in bed, willing my body to let go of this baby and begging God to make it happen soon. Pete inadvertently made Nanny’s corn chowder, the ultimate comfort food. It was one of the only things he could get me to eat.

Torture is when your body thinks its pregnant but your mind knows you’re not. You’re still exhausted. You still throw up in the bathroom at work when the woman with the overbearing perfume walks by. But you’re grieving and carrying double secrets–you were pregnant, but now you’re not. How do you even bring that up?

Friend: “So how have you been?”

Me: “Not good, I’m having a miscarriage.”

Friend: “What? I didn’t even know you were pregnant! Why didn’t you tell me?”

I had a couple of those conversations. They’re awkward. No one knows what to say.

Meanwhile, family members and friends are announcing pregnancies left and right. You don’t want to shit on their parade.

I waited every day for two weeks to lose the baby and it never happened. So we went back to the doctor and he did another ultrasound. This time, there was no almost-baby in my uterus. I had a blighted ovum, something no one hears about until they have one. The baby (embryo) gets reabsorbed into your uterus but leaves the embryo sack attached to your uterine wall. I was sent back home to wait another week to miscarry what was left of the pregnancy.

To say that I was angry about our situation is an understatement. I couldn’t hold back on how I felt. I had to miss a meeting at work when I had my second appointment with the new doctor. I came back the next day to a snotty email from someone in the meeting that said it wasn’t “acceptable for me to just not show up” for that meeting. My manager was in the meeting. She knew where I was, which is what mattered. It was all I could do to not type back, “Sorry to inconvenience you! I’ve been busy finding out that I’m miscarrying.”

“How are you?” was a loaded question. Trivial work tasks didn’t matter–don’t you people know that I’m miscarrying?? That my heart is bleeding?? Because I couldn’t trust myself to speak in public, Peter had the privilege of listening to me say things like:

  • “I am carrying around a dead baby. How is that even possible? I didn’t even know it could happen! How is our baby dead inside of me??”
  • “I’m having a miscarriage! Right here, in front of everyone!”
  • “How the eff am I getting a baby bump when there is no baby in there? Are we being punished? WHY ARE WE BEING PUNISHED?!”

He was a saint. He held me when I cried, gave me the perfect amount of space, and listened to all of my ranting without judgment.

The days dragged on. At 11 weeks and no miscarriage, we discovered that the (very small) baby bump was there because a mass had developed in my uterus, causing my uterus to keep growing. This is known as a molar pregnancy. Our doctor was dumbfounded.

“We were all here at the last ultrasound, right? We all saw that there was nothing there. I’ve never seen this happen before,” he told Pete and I.

He pulled my charts and sure enough, my uterus was empty at the last appointment, just like we all thought.

Molar pregnancies are complicated. They’re usually just tissue with parts of a baby in it, and have to be removed by a D&C. But they can also lead to cancer. Because there were so many veins connected to my “mole” I needed to have it removed immediately. I had a high chance of hemorrhaging during the procedure–was I okay with getting a blood transfusion? If it came back cancerous, I would have to start chemo.  If my pregnancy hormones didn’t lower in an appropriate amount of time once it was removed, I would need to have blood tests every week for six months and start a low-dose chemo if the levels weren’t reducing fast enough.

The D&C was scheduled for the next day (a Friday) because the mass had grown so quickly.

There wasn’t enough time to be scared. I was drained and I just wanted to be done with it. My parents wanted to come up, but I wouldn’t let them. It was out patient, and I was sure that I would be back to work on Monday. We had already scheduled to redo our floors (in preparation for the almost-baby, of course) that weekend weeks before we knew this was happening so there was no where for them to sleep. Pete would be there so it should be fine.

The procedure went great, and there wasn’t as much bleeding as our doctor expected. But no one tells you the pain from a D&C doesn’t start until a few days after the procedure. I was told it was like “period cramps but a little worse.” I spent a week out of work, curled up in a ball on the couch. I couldn’t walk or sit up. When I called the doctor see what level of pain equals “severe,” I found out that the “mole” hadn’t been cancerous and I was probably having contractions. It wasn’t normal but it happened sometimes if there was more tissue in my uterus than they expected. He promptly called in a pain killer that made the rest of that week a lot more tolerable. A week after my procedure, alone in our house, I passed the rest of our pregnancy on the toilet.

It took 11 weeks, but at least there was finally closure.

 

Down the Rabbit Hole

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It began with the hot flashes.

It was September, after all, and the building that I work has an air conditioner that is notorious for breaking. I kept telling my friends at work that it must be “The Change.” Which doesn’t happen at the ripe old age of 28, so it seemed like a good joke.

At home, I would collect the clothes from our bedroom and carry them to the laundry room. 100 feet, max. By the time I was back inside I was sweating profusely. I will be honest and say that I sweat more than the average girl. I blame it on long summers spent in the Miami sun at the Royal Palm Tennis Club’s camp. My body knows how to cool itself down quickly. But just vacuuming the floor made me sweat more than I did after an entire day of tennis, and I ended up giving up and just laying on the bed during the weekends with the fan on high to keep cool.

And then, on the day that I was going to meet Lyanna, Aunt Eva, and my Newfoundland relatives in Jacksonville, I threw a can of cat food in our garbage and discovered Pete had forgotten to put a liner in there. No big deal. Except that I reached down to pick it up and gagged from the smell. I told Pete that he had to take care of it and clean the garbage can, obviously something else was in there.

“Maybe you’re pregnant,” he joked. Both of us knew it wasn’t possible. I didn’t get an IUD for no reason–they’re supposed to be 99.9% effective. Inside I started to panic–between the aversion to smells and the sweating something was obviously going on.

During my drive to Jacksonville, I decided to stop and take a pregnancy test so that I would stop worrying. And there, in the bathroom of a Walmart, I found out I was pregnant.

I sat through lunch with my long-lost cousins and whispered to Lyanna that I had a huge bomb to drop on her later. As soon as lunch was over and we were walking to her car, I told her.

“We’re going to Target to take another one right now to be sure,” she said. And there, in Target we took the second test, and again, it was positive.

I swore her to secrecy. IUDs come with a risk of ectopic pregnancies, so I wanted to be sure that it was a baby before we got too excited. And tell Pete, of course. That night when I got home I videoed his reaction to me handing him the pregnancy test. We took a third one to be sure. Positive, again. It would make a great story for the kid, that its mom found in out the bathroom of a Walmart and confirmed it in the bathroom of a Target–super classy. I made the first OB appointment and we saw the beginnings of our little baby floating around, and I thought that this baby was meant to be since it defied the odds and was conceived. I was six weeks pregnant, after all!

Of course we weren’t ready. We live in a tiny place with only two bedrooms,  and Pete had just graduated from his grad school program. We had even been talking about not having kids because of Pete’s kidney disease, and were scheduled to see a genetic counselor to see what the odds were of the child having it. But it was ok–we would make it work. When our second appointment rolled around we were starting to get excited. We had told our parents and sworn them to secrecy as well–we wanted to pass the first trimester mark to be safe.

At the next appointment I couldn’t wait to hear the heartbeat. I remember laying there on the table and the nurse saying that the doctor had to talk to us. We could see the ultrasound and something wasn’t right. The baby didn’t look like it should. When we got to the doctor’s office, she said she couldn’t see a heartbeat, but they might be off on their dates, and “maybe a miracle would happen” and we wouldn’t miscarry. What? The baby might be dead?

The doctor handed Pete back all the medical paper work we had just filled out and told us to bring it back the next time we were pregnant.

And that was how our journey through pregnancy loss began.

strong

We are sitting in the waiting room at Mayo Clinic and Pete is reading Cat Fancy.

It’s Biopsy Day #2. Biopsy Day #1 was a waste of time and money. The doctor at Florida Hospital did not take enough of a tissue sample and sent it to what I’m now calling a nephropathology farm, so while he said the results he got from Biopsy #1 were enough to determine if the Prograf was toxic to Pete’s kidneys, it wasn’t. According to our Mayo doctor, Dr. A, the results weren’t even enough to make a diagnosis about the state of Pete’s kidneys.

Music plays. Mayo has a Humanities in Medicine program and we’re being serenaded by two volunteers with violins.

I turn to Pete and ask, “Are you nervous?”

“No,” he says. “We’ve done this before. It’s not that big of a deal.”

“I hate to ask you, but I can’t remember right now. If something happens, if they can’t wake you up, do you want to stay on life support? We really need to do our living wills.”

“After something like this? Yeah. It doesn’t matter though, everything is going to be fine. ”

Love takes on many different forms. In our case, Pete expresses love by getting a biopsy he doesn’t really want because I asked him to. Because I called the National Institute of Health (NIH) to try and get him on a clinical trial and they wanted a conclusive biopsy. Before this, we had been mulling over the biopsy idea. His treatment may not change. His diagnosis may not change. But now it’s not completely about him–the NIH can use him to hopefully find a genetic marker for what Pete has. And selfishly I want to know what we’re dealing with.

Aunt Eva calls and she’s standing outside the main entrance. I leave Pete and the violinists and meet her. I am learning to ask for help. In the weeks leading up to the biopsy I became increasingly anxious, until I realized that I couldn’t sit in the waiting room alone while they did the procedure. At Florida Hospital, it took them two and a half hours after the procedure was over for them to come get me–they forgot I was there, and then couldn’t find Pete. Watching them take him away to a place I couldn’t go, and then not being able to find him wasn’t something I could go through again alone.

“We need at least 15 glomuleri,” I tell the nurse. “Will you make sure the doctor knows?”

She looks at me, surprised. “Fifteen? Where did you hear that from?”

I’m learning how to be an advocate.

I explain what happened that last time: there weren’t enough glomuleri to make a diagnosis. That All Children’s Hospital in St. Pete shouldn’t have even made a diagnosis when Pete’s first-ever biopsy was done when he was 19. And that was supposed to be a good hospital.

Soon we have 5 nurses in Pete’s curtained area.

“Tell them about the glomureri,” the our original nurse tells me.

I explain again. The doctor walks in and Aunt Eva whispers to me, “The glomureri! Tell him!” She’s advocating my advocacy.

Pete is giving me a look from the hospital bed. His look says, Stop harassing these people.

The doctor asks me if I’m “the bride” and if I have any questions. I can’t help myself.

“Dr. A says we need at least 15 glomureli!!” I blurt out. Aunt Eva laughs, and Pete rolls his eyes.

The biopsy takes 30 minutes and is over before Aunt Eva and I get back from lunch. Pete’s awake, alert, and not in any pain. He just has to lay on his back for 24 hours to prevent internal bleeding.

I kiss Pete on the forehead and ask the nurse if they got enough tissue.

“We did,” she replies. “Four specimens.”

Dr. H, standing in for our regular doctor, walks in to check on Pete. He squeezes Pete’s foot while asking if he’s in pain. It’s a comforting gesture, and it’s all I can do not to hug him.

One week and another Mayo visit later, Dr. A tells us that we have a diagnosis. Fibronectin glomerulopathy.

Neither of us can  say the last word correctly.

We find out that it’s autoimmune, and that’s why his medications don’t improve kidney function. Our job is to keep Pete’s kidneys functioning as long as possible. A transplant will happen eventually, but we knew that. But now we know that it’s possible he will need another transplant after that. It’s pretty rare, and according to Dr. A, only 23 people were in the last study since that’s all they could find.

“You could have picked something easier,” Dr. A jokes, and we laugh. He grows serious. “Fibronectin glomerulopathy is autosomal dominant.  You should see a genetic counselor before having a baby.”

Suddenly, having a child becomes ethical.

We talk about the possibilities on the drive home. We could just be the cool aunt and uncle to our nephews and spoil them rotten. We could get a dog. Move closer to family. Travel whenever we wanted. Buy a lake house and host all of our friends and family all the time. It’s not what we wanted, but we could make it work.

Or we could take a chance and have a baby. A baby that will have a 50/50 chance of having a disease that no one knows anything about. Who, if it gets the gene, will be relatively healthy until their twenties and then faced with a transplant between 20-60, according to the research. Is that fair? I don’t know. It’s a lot to think about.

 

Being Grown Ups

It’s Sunday morning and Pete and I are at Jack and Mary’s, our diner of choice.

We spent Saturday night celebrating a magical early Valentine’s Day by pretending to be grown ups. Dinner at Kres, followed by attending Celtic Women (my idea, of course) at the new Amway Arena. The sprightly Máiréad Nesbitt pranced around the stage with her fiddle as I leaned over to Pete and said, “I’m going to start doing that around the house.”

He laughed and replied, “We don’t have enough space for that!”

Maybe someday.

__________________________

Jack and Mary’s is so busy that we take a seat at the counter. I don’t like sitting at counters, because I feel like the people behind it are too close to me.

“I’ve been thinking about something,” I say to Pete as Nancy the waitress fills our sweet teas.

“Uh oh,” he says.

I love ridiculous conversations with him because they make him laugh, and this will be a good one.

“I think that we should buy a cat stroller for the boys,” I say, half seriously.

“You want a what?!”

“A cat stroller. You know, to take the boys for walks around the neighborhood. We could take them to the park and–”

“We are not doing that,” he interrupts. “I am not buying that for you. You are not going to become that crazy girl who walks her cats. Not in our neighborhood. Maybe if we move to a better neighborhood. But not this one.” Our neighborhood isn’t really unsafe, but it’s not that safe either.

“Well you won’t get me a dog, so what am I supposed to do?!” I reply. Joey found an incredible home but I really miss him. He was my lifeline some mornings. “I bet my mom would buy it for me for my birthday. I don’t care if our neighbors think I’m weird.”

I start to laugh and the hiccuping commences. It’s just what happens when I laugh too hard.

“I”m going to call her and tell her not to! You know, I have to negotiate something as part of my homework. I’m going to use this as my example,” he says.

I think about this for a minute, hiccuping still. “So you don’t mind telling your classmates that you married the crazy girl who wants to walk her cats, but you’re embarrassed for me to do it in front of the neighbors? I have to meet the people you’re in school with eventually. I don’t want them to think I’m weird!”

“This is all your doing,” Pete says, smiling. “You did this one to yourself.”

_________________________________

It was the type of weekend that I thought real life would be like by the time I was 27. Dinners out and seeing shows or concerts when the mood struck us. Recapping the weekend over greasy eggs and hash browns with grilled onions and having ridiculous conversations.

Jack and Mary’s is doable on a regular basis, but the rest isn’t right now. I think that when you’re a kid, you have a naive perception of being a grown up. You don’t think about real life–the mortgage, a sick partner, a sick self, cats with impacted teeth that need to be removed. Friends who you love that will move away to be closer to family, making you realize that you might like to be closer to your family someday too if you have kids, so they can experience what you did as a kid.

But if every weekend included Kres and some silly show at the Amway Centre, we wouldn’t appreciate it. I wouldn’t spend the next day with my husband, eating eggs and having just as much fun as I did at Kres the night before. Because it’s not about the money or fancy places. It’s about being with someone who you can face each challenge with, no matter how difficult, and still have ridiculous conversations about cat strollers to make each other laugh.

A Little Asphalt Dancing Never Hurt Anyone

Peter and I had to take a trip to the wonderful Mayo Clinic last week for his six week check up. The doctor was supposed to have obtained Peter’s biopsy slides, but the hospital that we had the procedure done at hasn’t been cooperative. We were both a little disappointed, because once Dr. Aslam takes a look at the slides, we’ll  find out what medication he goes on next. Also disappointing (to Pete) is that his potassium and phosphorus is still high, and we’re going to have to see a nutritionist. My poor hubs isn’t going to be able to eat anything fun, and I guess I’ll have to start cooking for myself. Dun dun dunnnn.

All of this has been stressing me out lately, and Pete caught me in a rare moment of silliness. It was in the 20’s in Jacksonville that day, and we had time after his labs to grab breakfast at a nearby diner. The sprinklers were on, and it left icicles everywhere in the parking lot. Not something this SoFla girl has ever seen before.

Isn’t it pretty? There was ice all over the asphalt, so in a rare moment of silliness captured on video, I took the opportunity to do a little dancing on the ice.

I’m glad that Pete took the video. It’s not a side of me many people see, especially lately. We have a lot of situations going on right now that require decisions. The video reminds me that the sun will always shine after the rain. Even if it feels like it’s raining a lot.

The Biopsy Test Results are Back

We had Pete’s doctor appointment last Thursday, and I took a half day so that I could go. I’m pretty sure that everyone knows about the Best Doctor’s report (a benefit through work, they send his medical history to a leading nephrologist who writes what he thinks Pete should do). Out of that came a diagnosis of IgM-associated mesangial proliferative glomerulonephritis and a recommendation for Peter to try a cyclophosphamide.

According to Pete’s doctor (Ahmed), there was more scarring in his kidneys that he would have liked, but the biopsy did show that the Prograf Pete’s been taking (an autoimmune suppressant) has become toxic to his body. At his last appointment, he decreased Pete’s dose, and from that Pete’s kidneys have gotten better. Now Pete will be 100% Prograf free and taking Vitamin D supplements, because his parathyroid hormones are a little high (secondary hyperparathyroidism). Secondary hyperparathyroidism is common in kidney patients, and just means that his calcium levels are too low, so his parathyroid hormones are taking calcium from his bones to  go into his kidneys and intestines. A lot of times kidney patients end up with bone problems, and that’s why. I just think that it’s weird that you can have hypothyroidism AND hyperparathyroidism, but Ahmed explained that the two areas are right next to each other in the thyroid and do different things. You can see I’m learning a lot from all this! 😉

Ahmed said he’s already doing 90% of what Best Doctor’s recommended, and it just confirmed what he had already diagnosed with Pete. He doesn’t recommend that we go with the cyclophosphamide just yet, and wants to see how things go with the Vitamin D, Aranesp (shot for anemia, also common in kidney patients), and no Prograf. Pete will still stay on all of his other stuff, but Ahmed is hoping that the toxicity from the Prograf is what was causing Pete’s fluctuating protein/creatinine levels. We’ll reevaluate in 9 months. We were considering switching to a Mayo doctor that Best Doctor’s recommended, but I met Ahmed and like him a lot. And he said that me, him and Pete were a team, so he’s sold me on staying with him for now!

A transplant will be the end result of all this, but all of the meds Pete takes are to lengthen the amount of time that that will happen in. Best Doctor’s said that if Pete’s protein/creatinine levels continued to go up the way they have been, a transplant would be likely in 2 years. Now that his number are falling again, Ahmed seems confident that the Prograf was the problem, which is great news, and that we’re shooting for 20-25 years. The longer we can put it off, the more technology that will become available—I just read that a lady had her kidney taken out from her belly button. Can you imagine???

Thanks for all of your love and support. I’ll be keeping you updated on everything, but no news is good news as far as I’m concerned! 🙂

Biopsy Day is (Almost) Over

So we’ve had quite the adventure here at Florida hospital. I woke up with a cold, and have been hiding sneezing and blowing my nose here in post-op (and using crazy amounts of hand sanitizer). We started out by going to the wrong building. And now we’re in the midst of waiting five hours for Pete’s kidney to clot so that we can pick up some Chipotle and go home!

Everything went really well. He’s still a little drugged, but not too bad. He’s not in any pain yet, which is great. And they only gave him local anesthesia, which is awesome because I was worried about him puking all over the place after if they put him under. Woohoo!

Apparently it was Nurses’ Day, so some of the nurses wore their old hats.

Doesn’t this lady look sort of like a 1970’s nurse??

Peter also insisted on seeing the needle they were using in his procedure. I would never want to see something like that before any kind of surgery, but he kept asking to see it. It’s doubled in half in that bag (if you include the tubes).

And when the procedure was done, I walked in to see this:

A very drugged up, groggy husband that slept right through someone coding in the cat scan room.

Once we go home, we’ll make an appointment with Mayo Clinic and get the results from Pete’s doctor. Hopefully the food there is as good as it was here!

Now Pete is “flat-lining” himself by waving around the hand that has the pulse monitor on it. I think he’s going to be just fine. 🙂

Biopsy Time

In the morning, Pete will be having a kidney biopsy to check up on how things are going in there. It’s a fairly minor procedure. We have to be at the hospital at 6 am, the procedure starts at 8, he’s in recovery at 9, and we have to hang out there for a few hours so they can make sure that there’s no internal bleeding or anything like that. Even though I’m sure it will be fine, I’m more worried about how the anesthesiais going to affect him after. My dear husband thinks he’ll be attending a study session that night because he “felt fine after the last biopsy” ten years ago. I just don’t want him throwing up everywhere and feeling all nauseous and gross and in pain. I’m working from home afterwards (what kind of hospital doesn’t have wifi?!) tomorrow, and tentatively on Thursday depending on how he’s really feeling.

If your curious on what goes on in a kidney biopsy, here’s a link: http://ow.ly/1JUYj

To detract from that serious bit of news, here is a picture of a kitty who got a little confused about his footwear.

Best Doctors Really is the Best

After six patient weeks of waiting, we finally got Pete’s Best Doctor report back. It’s a little overwhelming for a few reasons. The doctor who wrote the report and answered all of our questions works at a Harvard teaching hospital. He backed up everything he said by citing 44 references. 44! And even though most of it was in English, the a lot of it was filled with medical terms that I need to look up still.

The doctor said that from 2003-2008, Pete’s kidneys were relatively stable, and his creatinine levels showed that he would have adequate kidney function for many years. Since 2008, his creatinine levels have jumped up rapidly, and if it continues this way, Pete might have to have a transplant as early as the end of 2012. But the doctor isn’t sure because Pete’s glomular filtration rate (GFR) has varied, so he thinks it’s possible that the medication he is on has become toxic to his body.

I’m hoping that the toxicity is the problem and a med change will do the trick. We’re not thrilled about the side effects of the alternate medications, but it’ll be ok. Best Doctors also sent us the name of a pretransplant kidney specialist in Jacksonville, so I’m looking forward to meeting him and hearing what he has to say. 2012 is a worst case scenario anyway, and with technology and the leads that we got from the Harvard doctor I think that we have a pretty good chance of avoiding that. If not, hopefully I’ll be a match!

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