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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.

 

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!

A Sweet Quote

A woman in England donated her kidney to her husband after finding out she was a match, and I love (and completely understand) what she said:

“Everyone kept saying to me ‘you are so brave’ but I work for a psychiatrist and he said to me: ‘You are brave enough to have this operation, but you are not brave enough to live without your husband ‘ and that’s when I realised he was right – I couldn’t manage life without Barry.”

People who receive living kidney transplants live up to 20 years longer, while people with kidney transplants from cadavers usually only live 10 years longer. I hope that I’m a match someday.

See the rest of the story here.

The Adventures of Pete and His Kidneys (Or, Diffuse Mesangial Proliferative Glomerulonephritis)

Peter is obviously a major part of my life. With Pete come his kidneys. They have a life of their own, and enjoy making me crazy with every flare up of gout, every blood test, and every urine sample.

When Peter and I started dating, he would make trips to a hospital in St. Petersburg for checkups with his nephrologist. I didn't really know what it was about, because he never explained it past "my kidneys make too much protein." That was enough for me at the time. He didn't look sick, and never felt sick, and never really talked about it, so I wasn't too concerned. I thought that it was minor. If Peter slept over the night before a lab test, he would bring a big jug that would go in my bathtub for his 24 hour urine sample. It was a normal thing to me. It wasn't until we were engaged and I connected the gout he was getting to his kidneys that I realized that we were dealing with something big and unpredictable.

What Pete has is Diffuse Mesangial Proliferative Glomerulonephritis. It's a disorder that causes protein to be lost in his urine, which he told me, and also causes his kidneys to be inflamed. Other symptoms he has are high blood pressure, the occasional bout of gout, high potassium, anemia, and hypothyroidism. For all of these things he takes an immunosuppressant, blood pressure medication, synthroid, and a low potassium diet. The newest addition to this is Aranesp, which helps his body produce more red blood cells so that he's not anemic.

The Aranesp freaked me out. Pete has to go once a month to get a shot, and for his first shot the nurse told him something that we hadn't heard before. In the last six months, Peter's kidney function has gone down to 30%, 18% lower than it was at his last appointment. Because his glomular filtration rate is 38, he is in stage three of chronic kidney disease, but at the lower end of it. Stage 4 begins at 29.

So we are working on it. Pete has been working out, and I have been scouring the internet for different things we can do. We will be seeing a nutritionist that can help with a diet that is kidney-friendly. We've also been working with Best Doctors, which is a service that my company offers, and a world-reknown nephrologist will be going over Pete's charts to make sure that someone didn't miss something.

Normally I wouldn't post crazy medical stuff about either of us, but so few people have what Pete has, I felt like posting something about it would up the chance of someone finding me, be it a doctor, or someone else that has what Pete has. And maybe they can help us with their experience with treatments and what we should be doing right now. So I'm sending this out into the Internet, and hopefully someone will find it.

And aside from all that Peter is fine, by the way. It's just his kidneys that don't cooperate and like to freak me out. And I'm always up for a challenge, even if it's winning a war against my husband's kidneys! 

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