Losing Erik to Feline Chronic Kidney Disease/Chronic Renal Failure

You might have stumbled upon this because you’re searching for information about feline chronic kidney disease (CKD) or chronic renal failure (CRF). You might be frantically reaching out for any bit of recent-real-life information like I was.

I want this information to be an account of what happened to our family and to our sweet boy.

It happened so fast, and he exhibited only a few of the physical symptoms that vets tell you to look for.

Even on his very last day the vet wasn’t sure that it was time just by looking at his bright eyes and cheerful, active body language and attitude.

But it was time. And I want other people to learn from our experience.

In mid-August 2015 our battle with feline chronic kidney failure began.. only we didn’t know that’s what was happening.

I took details notes about his symptoms, behavior, and the resources I found, so I thought someone else might find them useful.

I included our story and also specific examples of behavior like eating, litterbox, etc. If you’re more interested in that just scroll to the bottom.

RESOURCES

Before I share our experience I wanted to be sure to provide this well known site that thoroughly discusses feline kidney failure.

This online guide was essential as my husband and I learned how to care for Erik throughout his disease. It also helped us prepare for what it would be like to euthanize a pet and what we should expect, since neither of us had ever experienced that.

I highly recommend reading every inch of this website.

Tanya’s Comprehensive Guide to Feline Chronic Kidney Disease

 

TIMELINE

August/September:

In August our otherwise big, healthy, loving boy had been hiding from us. Erik loved people, though, so he eventually came out and sat on his heating pad.

I went to cuddle him as usual and felt his paws and ears- they were almost ice cold. He was alert, sitting up, and showing no signs of distress. I fully expected he had a cold or something very minor, but I still took him in right away.

When we got there they said his blood pressure was dangerously low and that he was severely dehydrated, which came as a huge shock to us. How did this happen? What was wrong? We still don’t know what happened.

They gave him fluids and ran blood tests, ultrasounds, and x-rays. He was back to normal and they sent him home with us that night.

At that point I thought maybe he had acute kidney failure, but to this day I have no idea what would have caused it, as there was nothing that he appeared to “get in to”, eat, etc. and we don’t have any dangerous chemicals in the house.

He was perfectly fine from then on. Like it never happened, until a few weeks later I noticed he was drinking more water than usual. He and his brother always loved to play in the sink and the bathtub, but this was different somehow.

I thought he was just not wanting to drink from the fountain. Their water fountain was old, so I thought maybe buying a new ceramic one might help.

It didn’t. He was constantly  jumping in the bathroom sink and tub.

Then maybe 3 weeks later I noticed he appeared to be losing weight little by little. Then later the obvious food-pickyness started. Erik LOVED to eat. He loved all kinds of food and was an adventurous eater. But when he started to turn up his nose at even his favorite foods I was concerned.

During all this time he had a few followups and  I had been researching the symptoms. His blood work was normal. At his first episode I thought he had liver problems, but the vet said that was not the case.

October:

Then, 2 days before we left for our vacation in October I noticed more pronounced weight loss around his spine and hips.

The food pickyness had gotten worse. His attitude never changed. He wasn’t laid out, he wasn’t lethargic. He wasn’t crying or showing any distress…but he was dehydrated again and his BUN and creatine were stage IV kidney failure.

Erik needed to be hospitalized and given IV fluids and observed. We cancelled our vacation and visited him every day of his 12 day hospitalization. He didn’t want to eat until we visited.

He was released after his blood work seemed stable. He would bounce stage II and III depending on the day of the blood work. We started subQ fluids at home after that.

November:

Around mid-November I noticed he was a little wobbly. He was still walking, but he just didn’t seem as sure footed as usual. I thought it might be because of his weight loss.

His coat was still bright and soft, though his fur was a bit spaced out where we were giving him his subQ fluids.

Erik had  to be hospitalized a few more times between October and December. The vet tried hormone therapy, but he didn’t respond as well as we had hoped.

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Erik loved to snuggle

At one of our followups the vet also discovered that he had severe anemia that had not been present in previous blood work. This surprised everyone because he never showed the tell-tale signs of anemia except for the slight wobbliness.

Since he slept with us we lowered our bed to the floor to make it easier for him. We tried everything we could think of to make his daily life easier. We kept him warm and tried to bring things to him so he didn’t have to do too much.

We were presented with a last-ditch option- a transfusion. At first we said no, because it was highly invasive for both Erik and his brother, and it was only going to give him a few more months, at most.

After thinking about it we did try it. And we are glad we did. It gave us almost 2 extra weeks with him. In those 2 weeks even though his health quickly deteriorated he remained bright, loving, and cheerful.

December:

He had one major seizure 5 days before we said goodbye. Though he was awake he was rigid and urinated freely. It lasted only a few seconds and he acted like nothing happened afterwards.

In his last week he was passing blood in his urine in both large clots and in liquid, and the vet said that was to be expected due to his condition and the recent transfusion.

He had very small seizures, too, but I don’t remember how many. My husband would whistle and sing to him and we’d pat him until he seemed like he could see us again. We think that he had high blood pressure at the end, as well.

Next he started bleeding from his gums a little bit. I knew it would be happening soon, so I was doing everything I could to help my family emotionally prepare.

Erik loved to sleep on my chest and 1 day after the light bleeding started I woke up to find blood on my chest, my face, the comforter, and his little chin. I was too shocked to panic, and he just looked up and me and smiled, snuggling against my face.

I wrestled with my gut vs. my heart. I couldn’t believe it was time. I wanted more time. I needed more time. But when we saw him go to the litterbox then come back and lie down, turn his head slightly (as if he was having a light seizure) and cry my husband and I rushed him to the vet and prepared ourselves.

Making the decision to say goodbye when your pet has such a will to live but his body is dying is the most painful experience of my life so far. He was not ready to go, but his body would not have lasted much longer. CKD cats can go peacefully on their own, but the likelihood of him having a heart attack, more seizures, and other episodes like that was just too much to risk. Neither of us wanted him to suffer more than he already was.

It seems that, for us, his kidney failure related anemia is what took him. He could no longer filter his own blood.

In the end he had lost at least 2-3 kg. We actually didn’t ask what his weight as at his death, but I know he was a fraction of the big, beefy boy he had once been.

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Saying goodbye

This is the last photo we have of him. As we waited for the vet to arrive we sat in the car to keep him away from unnecessary stress.

Shortly before it was time to go inside he weakly reached over and put his paw on my husband’s hand, gripping it tightly. Erik-chan loved to grip us when we held his paws or held him in general, so this was a special moment for us all.

I wish we could do more for him. I wish there was more that can be done for every cat who gets this condition. I want there to be other options, and I hope they’re available in the coming years.

Progressive, degenerative diseases with no cure, both human and animal, bring sadness and loss wherever they’re found. I hope that someday that will not longer be the case.

 

AT HOME CARE

We gave him nightly 200 cc of nightly subQ fluids. He received 1 kidney pill and 1 vitamin daily (both Japanese medication) and was usually such a good boy about taking them.

I would sit behind him, placed my hand through his arms so my arm was on his chest and my hand could tilt his head back.

Throw the pill in there, and blow on his nose or put water or food on it to get him to lick and ensure that your cat swallows the pill.

At times Erik was the master of stashing the pill in his cheek and spitting it out when I wasn’t looking, so just make sure it’s been taken. To be sure I started giving him a treat afterwards. If the pill fell out we started the process again.

LITTERBOX

I’m including a bit about the litterbox because I didn’t see this in any of my research.

Once the nightly subQ treatment started Erik started using the bathroom more frequently. I expected that due to the nature of the therapy.

He flooded the litterbox, which we read about but didn’t know what to make of it until we saw it.

What this meant was that he urinated to often and so much that it meant we had to change the litter much more often. Almost daily. To avoid this we added a layer of baking soda and litter. Then we placed a cheap dish-drying tray on top of that and covered it with litter.

That seemed to work well and prevented us from changing it so much.

Another thing I had never see before was the way the urine “leaked” through regular hefty trash bags, but it never had before. We used the same bags as we did before he got sick, but once his condition worsened we found that the urine literally leaked through the trash bags.

We had to double bag and put it in a cardboard box just to make sure nothing got through as we were changing the litter.

EATING

Eating became an exhausting daily battle of trial and error.

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We tried buffet style daily to figure out what he would eat.

Every day was different. I bought baby food. I bought kitten food. I bought every kind of canned food available to me. My family is stationed overseas so we didn’t have many options, but I bought them all. I tried everything to get him to eat.

He rejected the recommended Science Diet KD and Royal Canin. He would nibble if I added tuna juice, but that’s all. He wouldn’t eat much of it.

I baked chicken, and he wouldn’t touch it. So I bought a turkey and baked it. I found that he would eat bits of roasted turkey if I sat by him and hand fed him. Then he stopped wanting to eat that, too.

Eventually I decided to try Japanese wet cat food. Same thing- I bought 1 of every small can.

We found that he loved the Japanese version of Sheba and he heartily ate that until he left us.

KIDNEY TRANSPLANTS

Depending on where you live kidney transplants may be an option. I am in Japan, and this is not a common procedure.

I found 1 university several hours away from me, but they said due to his age and advanced kidney failure that a transplant would be much more risky- that he would likely die from the operation instead of kidney failure.

If you can catch it early and find a medical school or clinic that will agree to do this you might consider it. It is expensive (I was quoted something like $15k.), but at this point I was desperate and didn’t care. I just wanted to try my best to do everything I could for my baby.

 

SOME PHOTOS OF ERIK-CHAN

Rest well, sweet boy. We love you so much. You brought us almost 11 years of joy, love, and laughter.

 

 

 

Our First (and Maybe Last) Time to Climb Mount Fuji

My husband and I just did something pretty crazy. We climbed Mount Fuji and reached the summit.

While many people reach the summit each year, this is a big deal because we’re city people.  We’re not outdoorsy. I’m from Arkansas, but have never been camping besides 1 time as a kid, and I didn’t even stay the night.

Needless to say I don’t really do “the great outdoors.” I’m moderately healthy and active, but am recovering from cancer. I exercise and eat well, but I have some obvious health conditions that could have kept me from making it to the top.  David’s much more capable of physical activity and roughing it than I am.

So, that’s who we are and how untrained we are, and here’s our guide on how we climbed Mount Fuji and reached the summit.

How it happened

We had gone back and forth about climbing Fuji. We wanted to do it last year- our first year in Japan- but my cancer diagnosis last summer kept us from climbing since Fuji is only open for climbing in the summer months.

This summer rolled around and David and I had talked more about climbing Fuji. First we planned to go with friends. Then one of my hiker-enthusiast friends suggested I try a shorter 3-4 hour hike. She went with me on my first hike ever at Mount Mitake and wasn’t thrilled about the whole hiking thing (it was a nice place and I had fun with my friends). I’m just not into summer hiking in the humidity.

David and I stopped talking about Fuji after that. Even so, I started doing some stair climbing pretty regularly in addition to other exercise, because I had a feeling we would do what we always do and say “oh, let’s just do it and get it over with.”

And that’s how it happened. We picked a date and I booked a trip with our local military outdoor center so we’d be able to take a bus there and back, get cheap rental gear, and go with strangers. We didn’t know how we’d react to the challenge, so if it resulted in us being hot, tired, and grumpy we didn’t want our mild-mannered friends to see us like that.

In the end, we did it. We reached the summit through determination, pacing ourselves, and supporting one another. It was something that was nice to say we did, but we’d never do it again. Cool experience, and great for team building and such, but for us it was a “one and done” kind of thing.

Before the climb

You’re reading this because you’re either a regular reader (thank you!), or you’re interested in climbing Fuji (thank you!) I’m going to give you a run down of what I saw, what I did, and what worked for me.

I did a great deal of research on climbing Fuji before our climb date. I spent a lot of time reading both official website and personal blogs because I wanted to see what people of all shapes, sizes, and physical conditions said about their experience. I was particularly concerned about my health and endurance post-cancer, so I was looking for as many personal stories as I could find.

Unfortunately I didn’t find many guides, just mostly ” what not to do” in the form of people’s failed ascent stories.

From my experience, being prepared is critical to a successful climb- both physically, mentally, and supply-wise.

  • Research the different paths, too. We took the yellow route, the Fuji-Subaru line trail. We didn’t have an option, this was the route that our group guide chose. This is supposed to be the easiest path, though, so it’s worth noting.
  • Avoid caffeine or alcohol 24 hours before.
  • Tape up your feet with mole skin- the toes, sides of your feet, and heels.
  • Pack your gear, then make sure you have the bare minimum. You can buy water if you drink all of ours.
  • Be mentally prepared to make it to the top, but accept it if your body won’t let you. Don’t be too hard on yourself.

Packing

Here’s the supply list that was given to us with a few additions from me:

  • Thick soled hiking boots (casual shoes or trainers are not a good idea, in my opinion)
  • Long sleeved wicking shirt
  • Compression socks-wicking
  • Compression leggings- wicking
  • Wicking shirt
  • Medium size backpack
  • Lightweight rain gear
  • Warm/light fleece jacket
  • Headlamp with extra batteries (if climbing at night)
  • Gators
  • Trekking poles
  • Hat (with visor)
  • Small hand towel
  • Utility gloves (for climbing the vertical rock walls-wicking is best)
  • Water bottle or hydration system (i.e. Camelback)
  • Water (at least 2.0 liter)
  • Light meals (beef jerky/protein, etc.)
  • Aspirin
  • Small First aid kit (some adhesive bandages and ace bandages)
  • Sunglasses
  • Sunblock
  • 3 folded up plastic bags (to keep your things dry & for trash)
  • Small roll of toilet paper
  • Blister kit with moleskin and scissors to cut the moleskin
  • Change of socks
  • Oxygen can
  • Wet tissue (to clean your face after the descent- dust gets EVERYWHERE!)
  • Cotton surgical mask (when dust rises on the descent)
  • Watch & cell phone
  • Camera
  • Map
  • Money for stamps on your hiking stick (each station’s stamp costs at least 300 yen) plus food, souvenirs, etc. I think we took about 30,000 yen (and as many 500 yen coins as we could).

We brought everything on this list except the gator boot covers (wish I had rented them- they’d keep the rocks out of your boots on the descent).

We used everything on this list except for the toilet paper, rain gear and warm jacket. Our long sleeve UnderArmour and gloves were enough for both of us.

I strongly suggest you pack all of these items, and be sure to keep your pack as light as possible. Around 5 pounds was what we were told to pack, but I forgot to weigh it before.

  • As far as food goes- we packed high calorie protein bars and those squeezeable protein gel pouches.
  • Packing your backpack correctly is important, too. I highly recommend a hiking pack instead of a regular backpack because a hiking pack is set up with a ton of pockets and easy to access hooks and pouches.
  • Put the protein meals and yen (to pay for burned stamps on your hiking stick, and other incidentals) in the pockets on your waist belt or shoulder straps for easy access.
  • Put your first aid kid (bring scissors!) in an easy-to-access area. Same with your map, phone, sun screen, and oxygen can. You want to be able to get to these things without taking your pack off, if possible.

Climbing

I think that getting to the summit was more mental, than physical. I saw several fit-looking young men turn around at the 8th station.

I’m sure there are plenty of other tips from real hikers….but as a semi-athletic non-hiker this is what worked for me.

  • What you want to do is pace yourself and take your time. If you don’t make it to the top, that’s okay. You don’t want to over do it and you don’t want to get altitude sickness. Pushing yourself makes altitude sickness worse and you need to turn around immediately if you feel lightheaded, get a headache, or feel nauseous.
  • Stop for a rest when you need it, but try not to sit down and try to keep it under 5 minutes. We found that stopping for 1-2 minutes frequently helped us regain the strength to keep going.
  • You also want to climb and descend, when possible, in a zig-zag. Instead of walking straight ahead, you zig-zag in a wide pattern and you do it slowly.
  • I don’t know why this works, but I met a elderly man on the mountain who told me he climbs twice a year and he taught me this method. I had heard about it before from my hiking-enthusiast friend, but totally forgot about it and had never done it before until this kind man showed me.
  • When you climb stairs or the rock climbing section of the trail you want to alternate legs that you push yourself up onto.
  • Hydrate. Drink water when you stop for a rest. Even though I drank probably 2 liters of water I didn’t have to use the bathroom until the 7th station on my descent. Your body will thank you for staying hydrated!
  • The trekking poles make hiking SO much easier. Get them if you can.
  • From the 7th station to the 8th station it is about 2 hours of vertical rock climbing. Literally. You’ll need gloves and hiking poles. Sometimes I got so tired that I just climbed with my hands, and that’s okay, too.
  • At the summit you can see several souniveer shops and little resturants. We ate udon at the summit and got a few flags for our hiking stick. They offered to stamp the date on the flags, so that was pretty cool!
  • You can even what is probably one of the world’s highest vending machines and post offices there at the summit.

Descending

For me, this was the hardest part. My husband said it was difficult, but not painful like it was for me.

You’ll need your mask or towel here, the dust stirred up by other hikers is very thick. Just a heads up, when you get home you’ll find it in your nose, ears, and hair.

I was wearing rented hiking boots that were fine on the way up (I got a blister around the 8th station, but mole skin did the trick and I didn’t feel it after that). But, on the descent this was a different story. Even though the ends and sides of my toes were taped up very well, the descent wrecked my toes.

The descent is at a steep slope of lava rock from the summit to the 6th station. Some of the slopes had some soft grey rock, and that was easier on my toes because I could dig my heel into it, but the majority was this awful, hard, slippery red lava rock that provided zero comfort.

My toes keeps hitting the ends of the boots with each step. I tried side stepping and zig-zagging, but it didn’t bring any relief to my pain.

In the end I hobbled pathetically down from about the 9th station to the 6th station. My husband carried my pack from the 7th station on, and our guide realized that at my pace I was going to miss the bus. We said that was okay, and that we’d just get a hotel and stay somewhere…but he ran to the base of the 6th station and found some horsemen with ponies I could ride.

It cost something like 16,000 yen (about $130 usd), but I was no longer in pain and it was well worth it. David couldn’t open his wallet fast enough, and I got a pony ride out of the deal… so it wasn’t all bad.

It’s the morning after our trek now, and while my toes and legs hurt I’m not as exhausted as I expected. I kind of expect it to catch up to me tomorrow..but as of right now this semi-capable 14 month-post cancer patient is doing okay. My husband took the day off, but still went to the gym to lift weights. So, that’s how a perfectly healthy person feels the next day.

Final Notes

Just do your research. Take it easy. Respect the mountain, and listen to your body. If you ever climb Fuji, I hope you have a good experience!

Also, please donate 1,000 yen (less than $10 USD) when you see the little booth by the horse pen at the 5th station. It goes to the conversation of Mount Fuji and I heard that many foreigners aren’t donating in recent years. You get a cool button showing you donated and the year, and a free 3-day wifi passcode that works on top of the mountain!

Update: 2 months have passed, and the worst thing that happened to me was that I lost 4 toenails due to the injury I sustained on the descent. We have also been talking about maybe hiking again next year… so…we will see what happens!

A Foreigner’s First Concert in Japan

Last weekend David and I attended our first concert in Japan- the Sekai no Owari Twilight City tour in Yokohama. Much to my surprise the whole concert process is pretty different than all the concerts we’ve been to in the states. In the states when you want concert tickets you have a few methods of getting them:

  • winning them (free) in a contest
  • getting them through a fan club membership
  • buying them from the artist’s recommended venue
  • buying them from a ticket broker like Ticketmaster
  • buying them from individuals

It’s somewhat similar here in Japan, but we had some hurdles. First off, we don’t speak and read enough Japanese to buy tickets from auction sites or individuals. Second, we don’t have a Japanese bank account or credit card, so we can’t easily pay for them on said auction sites or from said individuals. This really limited our ticket buying options.

Getting Tickets: Japan has this really interesting lottery system that they use for many different things, including concert tickets. Each convenience store chain hosts a specific concert/artist. In our case we wanted to see Sekai no Owari. Lawson was the chain hosting their ticket lottery.

To enter the lottery you have to have a membership point card (at least you did for Lawson). Considering I don’t have a Japanese name it was a little difficult, but I just made it work on the online form. After you get a membership card it’s time to enter the lottery. You have to put your name, number of tickets, and date you want in the drawing. For really popular groups you can only enter once, so ask your Japanese or expat friends to enter their names in the lottery, too- but have them read the rules. For our show if you won you weren’t required to pay for them- no credit card was needed, but a friend did this for another band and ended up winning the lottery for 2 different shows. She had to pay for both sets of tickets! Luckily she was able to sell them.

Then you wait a month or so to find out if you won. We didn’t win with our entry, but my friend got the email that she (I) had won.

Winning the Ticket Lottery: Next you have to take the ticket lottery conformation number and go to your local convenience store and use their electronic transaction machine to get the placeholder tickets. These transaction centers can do much more than confirm event tickets, you can pay bills and utilities through them, too.

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These are just placeholder tickets- no seat numbers listed!

There was no English option, so the helpful clerk typed in all the information for me after my 4th failed attempt at retrieving the paper ticket stubs. I finally got it printed out. Then you take it to the register and pay for your tickets. That’s right. You won the lottery, but it’s not free. You just won the right to have guaranteed seats. The tickets that print out don’t even have the seats on them. You could get amazing floor seats, or you could get nosebleed seats… that’s part of the lottery-ness of it all.

Going to the Concert:

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Sekai no Owari Twilight City set

Then you wait some more. You wait and you wait and you wait until about 2-3 weeks before the concert when your actual tickets arrive. Mine arrived to my friend’s house, because they were linked to her membership rewards card and online account. I anxiously waited to find out what the seat numbers were. Would we get lucky with those, too? Based on the online seating chart our seats weren’t great, but they weren’t terrible. We had our tickets and the day of the event finally came around. We had no idea what to expect at the venue, so we arrived about 4 hours early. In the future we could probably arrive 1.5-2 hours early.

There were a lot of similarities to US concerts, like the huge crowds and long lines- especially for the women’s bathroom. There were some differences, too. At this show the concession food was reasonable, maybe only $1.00 more than what it cost outside the arena. It might have been because this band had a theme relating to local festivals, and food at matsuri (festivals) are usually quite cheap.

Whatever the reason, for the first time I didn’t have to pay over $4.00 for bottled water! I also noticed that there was a lot of cosplay. I mean, a lot. There was also a ton of young guys and girls doing “twin style”- where friends dress alike. Twin style is really huge in Tokyo right now, so seeing it wasn’t a big shock. Seeing so many people in cosplay did surprise me, though, especially considering that it was such a hot day. Some people had very elaborate and heavy costumes on.

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Sekai no Owari Twilight City show

Another difference was that people picked up after themselves. In Japan, everyone is expected to pick up their trash, so people had little plastic bags to put their trash and bottles in. In America most people leave their concession trash under their seats if they can get away with it. Something else that stood out to me was that when the crowd went to clap along to the music…everybody was in time with each other. In America you hear all sorts of off beat, out of sync clapping, but I didn’t notice it at all in our area.

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Japanese crowds clap in time!

And what about an encore? They do it here, too…. except it’s more polite. In the states we all chant “encore, encore!,” but at this concert the crowd sang a sweet sounding song that I couldn’t catch all the words of except for “one more time.” Everyone was singing this nice, polite song asking the artists to come out and sing once more- and they did. And it was fantastic. If I didn’t hear Dragon Night I thought I was going to go crazy, but luckily it was part of their encore.   Overall, it was a great first experience, but we couldn’t have done it without the help of our Japanese friends.

 

Have you gone to a concert in Japan? Did you find the food to be more expensive than this concert? What else was different from concerts in your home country? Feel free to comment!

How Thyroid Cancer and Hypothyroidism Changed My Body

Here’s a link to my post detailing my Cancer diagnosis and treatment timeline . I used to have a very predictable, dependable body. I knew how much exercise I had to do to work off that cookie I had at lunch. I knew how long it would take for me to recover from vacation/travel eating. I knew my body really well. Then I got cancer. I think an active list of my symptoms might not only help me, but might benefit someone trying to figure out their new life as a hypothyroid patient. I am not a doctor, so please track your own symptoms and discuss them with your doctor. Symptoms I have experienced so far:

  • weight gain
  • hair loss
  • insomnia
  • nightmares
  • pungent body odor
  • brain fog/forgetfulness
  • language/writing problems

1. Weight gain After my other thyroid was removed I gained 10 pounds in a month. While I understand that 10 pounds is not much when compared to other thyroid patients, it is unusual for me. It is also a significant amount of weight for a petite person like myself. I am thankful for only gaining a small amount of weight, but I must note it as a way that thyroid cancer and hypothyroidism changed my body. I have lost 2 pounds since my RIA (radio-iodine ablation) mid- September 2014, but that’s the most my weight has budged.I have 8 pounds to go to be at my pre-cancer weight. I eat a calorie restricted diet and try to aim for high protein, low carbs. I eat a lot of fish, and soy. While soy consumption is controversial, my endocrinologist advised that I can eat soy, I just have to eat it 4 hours after taking my thyroid pill. Resolution (for now):  Yesterday (11/18) I started a 2 workout a day plan. I am not doing strength training, but have read that strength training/weight lifting might help with weight loss for someone in my condition. I don’t have easy access to weights, but I’m looking into how to change that. 2. Hair Loss After the second time my Levothroxine was increased I noticed that my hair began falling out. It isn’t coming out in huge clumps, but it does come out daily. I find it on my pillow, in my brush, in the shower, and in my bicycle helmet. This has never happened before. When I get my hair cut it is even worse, so I avoid going as often as I should. I had to explain to my Japanese stylist that I was taking medicine that made my hair fall out so he didn’t worry when he saw all of it come out as he cut. 3. Insomnia For the past 5 months I have been taking Levothroxine at night (per my doctor). I have never suffered from insomnia before, but I would lie awake for about 3-4 hours on average. Resolution: I decided to start taking my medicine in the morning (which is what is on the bottle) on 11/6.  The day of my first morning dose I had a lot of energy (ran/biked 2 miles) and I fell asleep within 30 minutes and had no nightmares. A week later and I still have had no more nightmares and no trouble falling asleep.

4. Nightmares

I would also have terrible nightmares every night. It became normal for me, but just a few days before switching to a morning dose my husband commented that I have had persistent nightmares. Over time I just stopped noticing.

Resolution: (see #3)  5. Pungent body odor I have tried many things to alleviate the body odor that has accompanied my thyroid condition. What was strange is that after I had my surgeries the odor was gone for a few months while my thyroid medication was very low. Once it increased to 125 mcg the odor came back. I don’t drink coffee, only 1-2 cups of black tea a day. I don’t drink much soda, maybe 1-4 diet sodas a month. I’ve tried washing my armpits with baking soda, stainless steel (smooth stone) soap, rubbing alcohol, lymph drainage massage, antibacterial body soaps, and all kinds of deodorant+ antiperspirant. I shower twice a day, sometimes more. One arm is stronger than the other, and it’s opposite the side of my body where the cancer was present. Very strange. I have tried a variety of laundry techniques, too. Baking soda, vinegar, ammonia, sun drying, boiling water, several different sports detergents and laundry scrubs. That worked for a while, but once my hormones start getting out of control the smell comes back.  Resolution (for now): I learned about transdermal magnesium chloride therapy while talking to another hypothyroid patient on Reddit. I figured that I had nothing to lose, so I bought a bottle on Amazon. I have been using it for 3 days, and my body odor is minimal, even while on my period. I did not ask my doctor about this, because he told me he does not believe that non-prescription methods work. He also did not believe that my strong body odor was related to my thyroid issues. I am not a doctor, but this is my body, and I disagree. Update 7/4/15: The transdermal magnesium spray was a game changer. I have been using it since the date of this post and am back to only 1 shower a day, no overwhelming odor (unless I drink cheap coffee), and I couldn’t be happier. My doctor still did not believe that this spray helped, but it worked for me.

6. Brain fog, forgetfulness, scatterbrain, thyroid brain I have always been known for my amazing memory and ability to complete tasks quickly and efficiently. However, after the most recent dosage increase I noticed I could no longer remember even the most basic of things. I repeat stories, I forget what I was doing, I have trouble completing work and household tasks. It is extremely frustrating for me. I have told my doctor, but the symptom remains untreated. I asked about taking ginko biloba, but the doctor told me  that it probably won’t work and that it isn’t FDA approved, and left the conversation at that. Resolution (for now):  I keep forgetting to take it (go figure), but I think that taking my Levothroxine in the morning has helped. I am still foggy and forgetful, but it seems like it doesn’t disrupt my life as much as it did before switching to a morning dose.Update 7/4/15: In May my doctor FINALLY listened to me (once my husband went in to the appointment with me- that’s a whole other blog post in itself) and increased my dosage to the next strength. I have had more energy, and less brain fog every day since then.

7. Difficulty writing/editing As a technical writer this is very difficult for me. My job involves writing, and having to proofread so diligently and STILL finding basic mistakes makes me want to scream. Writing and editing have always come naturally to me, but I can no longer do it in the same capacity that I could before cancer and hypothyroidism. Resolution (for now):  This one is tough. I keep making mistakes. I will keep making mistakes unless I am very careful with my editing. There are probably mistakes in this post that, even though I’ve combed over it a few times, I still don’t see. I just have to keep an eye on it and try harder.

Beware Orivet Genetics and AnimalsDNA.com

This is one of the worst shopping experiences I have ever had, so I feel obligated to keep other people from making my mistake.

PLEASE avoid Orivet Genetics (AKA AnimalsDNA.com).

I wanted to see what one of our cat’s DNA looked like out of curiosity and after much research I found a company that claims to support breeders and individuals.

I’m honestly not sure how a breeder could work with them considering my one cat’s results have not been produced and I ordered it on February 18, 2014.

It is now August 12, 2014.

Below is the status of my test as of today.

—- DNA FINGERPRINT (PROFILE) – CAT Pending Tue, 18 Feb 2014

I searched my inbox and found 11 emails from the company since March 12 in reply to my questions about where my cat’s results are.

Each email promised my results in 1-2 weeks. Some even gave a specific date or day of the week.

Their emails contain excuses for the delay including :

  • they forgot (wow, really?)
  • that my several emails sat in Junk mail for a few weeks
  • that their email system was down for a long period of time
  • and that they had to “sit down” with their geneticist for a stern talking to.  That stern talking to happened June 27 and I have heard nothing since.

I was given 2 test results that I did not order as a consolation, but honestly I’m not sure if they even ran my cat’s sample to make those reports.

I imagine that falsifying cat DNA reports might be fairly easy by someone who knows how to do it, so I’m not even sure if the 2 reports I received are legitimate.

Please, please do not buy any DNA tests from this company. They have proven themselves to be both unprofessional and untrustworthy.

 

UPDATE 10/7/2014

After a few unanswered emails I got fed up and sent another email that I had contacted my credit card company for a charge back/ transaction dispute. That email was answered within a business day and I received a PayPal payment. With the currency conversion and PayPal fee it wasn’t quite the full amount I originally paid, but I’m just thankful to get any of it back.

I still stand by my warning because it took 8 months to get a refund. Be careful when you do business online!

 

My septorhinoplasty and thyroidectomy

In the spring of 2014 I discovered that my thyroid cyst from last year turned into a tumor and was growing steadily.

I am at an air base in Japan on my husband’s military orders, so first I had to go off base to a Japanese hospital to have the needle aspiration biopsy done because the base hospital couldn’t provide this service.

The surgeon at Yokota still needed to examine me first and noticed that I had a severely damaged nose from an injury I received in kindergarten. A girl hit me over the head with her heavy 1990’s lunchbox complete with an old, heavy thermos and my nose has remained broken ever since. After he performed some initial breathing tests I was amazed at the difference that being unobstructed made and he agreed to revisit my nose problem after I had some more work on my thyroid done.

The second appointment was a consultation at St. Luke’s International Hospital in Tokyo, about 2 hours one way by train. I had to visit the bi-lingual doctor, then the surgeon for the needle biopsy, then re-visit the first Japanese doctor so that I could get the results back in English. February and March were exhausting with the back and forth appointments.

The FNA (fine needle aspiration) here was an experience I’ll never forget because Japanese medicine doesn’t use anesthesia like American medicine does. The doctor looked at me and said “don’t breathe, don’t swallow, don’t talk”  before shoving he long, thin needle into the left side of my throat. The needle could have been short, for all I know-it just felt like it was a foot long. My brain had no time to register what happened, so the pain didn’t come until an hour later.

He gathered cells twice (he called the needle insertions “punches”) and that still only took 10 minutes; the same procedure took 45 minutes with anesthesia last year in America.

The FNA results came back clear for cellular cancer, but the doctors were concerned with what we couldn’t see so I was sent back to Yokota to biopsy the tumor itself.

Here is another difference between eastern and western medicine; the Japanese doctors did not want to remove any part of the thyroid and only wanted to only take the tumor, but all the American doctors wanted to take both the mass and half my left thyroid.

Now I was faced with the decision of the actual surgery. I received a referral to the naval base even farther south (about 3.5 hours by train one way) and it was the same process. A consultation, a return trip for the surgery, and a lengthy stay.

I was really frustrated with the idea that I would have to miss more work to go even further away so I emailed the ENT surgeon I first met at Yokota.

This was around late April and as it turns out my surgeon was set to leave Yokota Air Base in July, so that is why my referral was for the naval base. I was able to talk with the surgeon and get him to accept my surgery before he left- both of them, actually. We decided that he would do both the  septorhinoplasty and thyroidectomy at the same time. The  thyroidectomy took priority, of course, and would be the first procedure he would do for me.

My surgery was the morning of May 28, 2014 and this is the story of my surgery and recovery.

I have never had surgery before, except for having my wisdom teeth removed, so I was pretty anxious about being down for so many weeks.

Luckily all of our bills, deposits, and withdraws are automatic so I had nothing to worry about there. I highly suggest you put as much of your life on “auto pilot”  as possible, it will make your life so much easier.

I finished graduate school a few weeks ago, so I have no loose ends to tie there, either. I only had to get my work assignments and tasks set up so that I can easily have someone followup on my work.

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Wednesday after waking up from surgery

It took 3 times to get the IV into my arm, and my wrists have the bruises to prove it.

The last full day I remember is Tuesday, and that feels really weird to have lost so many days.

Immediately after the surgery I felt great, which really alarmed me because I wasn’t sure if that was the drugs, or if I really did feel okay. I was eating, walking, and sleeping relatively well. I had crackers that night, and the morning later was able to eat everything on my hospital tray.

The incision on my throat is fine, and I have minimal pain and discomfort. I can’t really put my head all the way back, but that’s no big deal.

My nose? That’s another story. I never expected the most painful and irritating of the two procedures would be my nose, even though I read about nose work beforehand and expected the itching. I’ve got both a nose cast on the outside and splints on the inside, and the itching is driving me crazy.

May 31 was the worst day for swelling so far because it felt like my nose was going to break my cast in two. I was able to get the swelling down with ice packs throughout the night. June 1 I was reduced to putting on gloves while I slept because I had been waking up scratching my nose and the rest of my body like crazy.

The next day I had to file my newly-grown nails down quite a bit just to avoid accidentally hurting myself. Benedryl isn’t dealing with the itching anymore, either, but luckily I had a prescription for itching already.

I’m taking my pain medicine on schedule, and have not needed to take the full dosage but a few times, so I’m happy with that.

Overall it feels like have serious sinus pressure and/or a cold because of the nose pressure, my need to carry around a Kleenex to catch drips, and having to sleep propped up at at angle so I can breathe.

The saline flushes 4 times a day has already become my least favorite thing to do during this whole recovery process.

By Sunday the bruising is starting to change colors from black to yellow. My nose cast comes off this coming Wednesday and I’m really excited about that.

I have had some light numbness on my left fingers since the surgery and have read that it might be a calcium deficiency, but I’ll wait for my doctor to monitor my thyroid levels to see what he thinks.

Wednesday 6/4

1 week post-op and I had the cast and splints removed today.

The ends of the splints are wider than my nostril is, so the initial pull was both painful and satisfying as it passed though. There there was the weird sensation of what felt like pulling spaghetti through my nose (that was the rest of the splint).

Then I had to experience that again on the other nostril. While it didn’t hurt enough to make me cry from pain, the pulling and tugging around my nose area made my eyes water and tears began to run down my cheeks.

Then the cast came off. I expected that to hurt worse than the splints, but the cast was no big deal. Immediately after everything removed I recognized how freely I could breath.

My doctor says that my recovery experience isn’t typical and that I am bouncing back earlier than most people do. Now this could just be him trying to make me feel good, but I wanted to mention it here since other people may have a harder time than I did.

I was cleared to go back to work as soon early as Friday and I will be back to scuba diving and will get to try sky diving in about 2 months post-op.

I asked about the light numbness in my fingers and he said that, considering I had 2 procedures that was about 4 hour long, that he thinks the tingle comes from how they position your hand tightly against your leg during the surgery and that the tingling sensation should go away in a few weeks.

While I know I am swollen, I see a big difference already- no crooked nose and no bump! And most importantly, I can breathe correctly!

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2 weeks post-op 6/11

Wednesday 6/11

Today marks 2 weeks post-op.

6/4 was the last day I used the pain medication, so I’ve been managing my pain very well. Most of the bruising is gone and I’m only left with some light yellowing on my cheek and the throat incision.

The numbness in my fingers is nearly gone and I’ve been able to crinkle my nose when I smile for the past few days, as well.

About 4 days ago I noticed a very strange droop/sag in both cheeks and I panicked.

It looked like I needed a facelift before I was 30. I emailed my doctor and he said it was likely just swelling and not to worry.

In the days since the swelling has indeed gone done and my cheeks are starting to look normal again.

I still have some swelling around my nose and cheeks and a little numbness on the tip of my nose, but I’m still breathing well and everything seems to be working out.

I did, however, get news yesterday that my biopsy results did come back positive for cancer.

The tumor had papillary thyroid cancer with a follicular variant. The doctors say that this is very treatable and My husband and I are staying positive and we both feel really good about it.

I’m scheduled for another surgery later this month to remove my right thyroid just to err on the side of caution. I’ll be on a thyroid supplement for the rest of my life, but it’s better than the alternative.

The other thyroid will be biopsied, as well, but it will be about another 2 weeks from the date of surgery to find out if they discovered any more cancerous tissue.

I will keep this post updated.

3 weeks, 2 days post-op

3 weeks, 2 days post-op

—————————–

Monday August 4

It’s August now and I’m recovering pretty well. The tip of my nose still feels pretty stiff, but it’s not painful or uncomfortable.

My second thyroid surgery was successful and I was told I am cancer free at the moment, so that’s great news. That scar is healing up nicely and I feel so much better without the cancer in my body.

I did end up gaining 4-6 pounds after the second surgery, but I am working on getting that under control. Sometimes a few pounds take more work to lose than double-digits.

Overall I’m glad to have had the procedures, even though surgery and recovery took up the majority of the summer. I’m having some trouble remembering that it is August already because it still feels like the beginning of summer for me.

I hope writing about my experience can help someone who is looking to have either of these procedures done!

If you’re about to have one of these operations done-stay strong. Wishing you a smooth surgery and recovery.

Manicures for Short Stubby Nails

If you found this, then you probably have the same problem I do- short, stubby nails (and in my case hands, too).

I was blessed with terrible hand genes. My hands are tiny and my nail beds are wider than they are short (think “squatty”).  31 years later (and many months after I first wrote this post) I learned I actually have hereditary clubbing on most of my nails. Yay for bad genetics!

This makes my nails look short and unattractive.

Lately I decided that, unless by some miracle of cosmetic science they discover a way to completely replace your fingernails (or even give me robot fingernails- that would be cool), then I’m stuck with these stubs.

I started googling it and discovered that, to my dismay, I’m pretty much out of luck. I’ve tried the hair and nail vitamins, I’ve tried acrylic nails (they destroy my real nails), and I’ve tried the Sally Hansen pink nail growth polish (I’m allergic to it).

Nothing seems to help. My nails are brittle, snag easily, and grow out strangely- they’re still wider than they are long and the nailtip is very flimsy.

Yesterday I decided that I was going to try to do something about it. I was going to try to embrace my nails since I’m stuck with them.

If you also have short, stubby nails, fear not. Think like an artist and use illusion to add length while you try to grow your nails out.

Here’s the steps:

1. Apply a basecoat

2. Find a design

3. Draw!

4. Spray your nails with hairspray from several inches away- too close and the Sharpie will smear.

5. Wait until the hairspray is completely try, then apply a thick topcoat. A thinner topcoat made my Sharpie design smear.

6. Do not clip your nails, file them. Clipping damages nails like ours.

1. I opted to buy a light nude color as a basecoat. I found Covergirl’s Outlast in “Forever Frosted” # 115. I’m very fair, so this color matches my skin tone.

At this point I have to say that I am incredibly inexperienced with painting my nails, considering I have never cared about them before. My paint jobs are always uneven, so I usually opt for a glittery or frosted polish because they seem to be forgiving.

Protip: if you don’t paint all the way to the edge of your nails and nail bed it will make your nails look a little longer. It won’t magically give you longer nails, but hopefully the results will be better than what you expected.

Use a small paintbrush dipped in nail polish remover to “cut in” around the edge of your nails. I also read drawing around the edges with Elmer’s white glue works, but I haven’t tried it yet.

I didn’t even even have nail polish remover (I told you I never cared about my nails before!) so I just tried to leave that gap around each nail by hand.

2. I started thinking about art and illusion. Vertical lines help lengthen the body, and patterns help hide imperfections.

I’m too cheap to go to the nail salon and I’m too embarrassed of my stubs to go if I wasn’t cheap, so I started researching something I had seen on Pinterest- Sharpie manicures. Here’s another great site for ideas.

I LOVE Sharpies. For our first Valentine’s day as a married couple I asked for Sharpies- and I still have most of them. That was 9 years ago, so they last a while.

Then I picked a color I liked- I’m really into teal and turquoise. image (1)

3. I just started dotting. Heavy dots, and light dots, in quick movements. The best part is that the Sharpie comes off with rubbing alcohol, so if you mess up or if you’re a perfectionist like me you can just take it off and try again.

I’m happy with it and I hope that it will encourage me to let me nails grow, stop picking my cuticles, and embrace what nature gave me.

4. Spray your nails with hairspray from several inches away and let them dry completely.

I discovered step 4 after trial and error. If you apply the topcoat without this step the Sharpie will smear (or at least it did for me)

5.  Add your topcoat. Also discovered through trial and error- if you use a thin layer of topcoat you risk more smearing. I used a thick layer and even then a few of the dots smeared to streaks. The picture above was taken before I added the topcoat.

6. Never clip your nails, file them instead. I read several articles that talked about how clipping short nails like ours causes more damage to our already delicate nails. File them lightly to shape them.