Friday, July 25, 2014

Dehydration Situation

So I went to the hospital last week. My second home.  Actually, I'm not gonna claim that. I DO love my wonderful team of transplant doctors/nurses etc and I actually enjoy seeing them and talking to them.  However, I think I'd prefer to enjoy their company at home, or at a nice restaurant.  Not at the hospital.

Don't get me wrong, it's not like I have to do heavy lifting at the hospital. I literally sit in a bed with my arm stretched outward, watching television or eating.   But being in the hospital can still be stressful. I try to look at the situation with my rose-shades on.  At the end of the day, though, I know that the hospital stay is costing me money, time away from my job, and time away from other things I may have wanted to do.  And then there's the stressing about when you actually get to leave the hospital.  Because ONCE YOU CHECK YOURSELF IN, YOU CAN'T CHECK YOURSELF OUT!  At least, not if you want your insurance to pay for it.  

But yeah, the doctors can keep you there for as long as they want if you're still not in tip top shape to go home.  So there's always that worry:  how much work will I really have to miss?  Eight hours or eight days?  And how much will this cost;  $200 or $2000?  And how many episodes "Scandal" am I going to miss?  None, because they have cable in the room. Duh.  

Anyhoo, I went to the hospital last week because I haven't been drinking enough water.  Can you believe that? Even after all of this when I told you that you should drink a ton of water to stay healthy.  Look at that. I don't even take my own advice. I should just delete this entire blog.

But it was an honest accident.  Recently, I started taking more pills.  It got really, really hot outside and apparently I didn't notice because I'm obsessed with summer and being HOT. I started working out five days a week at the ass crack of dawn.  I started walking around outside at lunch. I started getting busy and doing more fun things and not drinking as much water because...activities and FUN. And laziness. And forgetfulness. And stupidity.  And...and...excuses!  Lots of them.  I'm the Jenga champion of excuses, laying one carefully--VERY CAREFULLY--on top of the other. 

When am I going to remember that having a chronic illness or a chronic health problem means my health has to be a priority.  Taking care of myself can't be an afterthought like it might be for some really healthy people.  I can't look at people without health problems and scowl and HISS and spit (suddenly I'm a feral cat).  I can compare myself to the "healthies" and think "OH but they don't walk around with three gallons of water."  I need to focus on doing what's right for MY body.

So guess what all those excuses for not drinking water led to?  Fatigue.  Nausea.  Headaches. Stuff that I just passed off at first as "Jewel and Ben's super late bedtime" effects. Oh, and then I had weird circulation issues.  Tongue dryness.  Then my blood work told the tale and sang the song of what was going on inside my body:  high creatinine (2.5. Yoooo. Not good.), high potassium, low kidney function.  

I'm not sure if skimping on drinking water did ALL of this but I know it's part of the problem.  I needed water.  A lot of it. So my doctors instructed me to go to the hospital and get IV fluids in hopes that all those levels would go down a LOT.  I don't know if they did that much.  But going to the hospital was a big wake up call for me.  Sometimes I complain about being 27 and having to take my blood pressure, and not eat that much salt, and take pills, and drink 3 liters of water a day, at a minimum.  And I complain about doing all this and how I'm STILL not being completely OK. But I seriously need to cut that s&*t out.

I'm here. I'm still alive.  And I'm hydrated!  And my skin looks GREAT.  And I want to do things the right way.   I don't want to be that person who loses their donor kidney because they didn't drink enough water. 

So now every single morning, before I leave for work, I drink a liter of water.   This is not easy.  But it's not that hard either. 

Friday, July 18, 2014

Things That Make Me Happy Right Now

Meditating.  I just started, but this might be my new favorite hobby. I downloaded the Calm app and it is amazing. I've already meditated like six times in three days.

Baking a pie.

Writing for this blog.

Making desserts.
Treating myself to cookies and hot chocolate, because I've been trying to NOT eat sweets every damn day.
Walking in Fort Ward at sunrise.

Getting my workout in super early...even thought I HATE waking up early.  I'm usually just happy to get it out of the way.

Hearing good news.

This face:  

Seeing things grow in our little balcony urban garden.

Thinking about past miracles.

Coming up with new ideas.  

Researching products we need to buy to watch our favorite TV shows because Ben and I are suspending our cable subscription for six months.

Daydreaming about the day that Ben and I get new jobs.

Actually using Skype to connect with new and old friends.  

Getting emails about library books that I have been waiting to become available.  
Having a friend to hang out with over the weekend. 


I need to remember to make a list like this regularly.  It's a good reminder that there are good things going on in my life.  There are good days, good hours, and minutes.  There are happy times.  I just want to cling to these moments, these memories, white knuckle clinching, grasping at them like reaching for a wayward string peeling off a beautiful woven blanket.  
Holding on for dear life, always.

Friday, July 11, 2014

The Real Almost 30 Birthday

When you're with somebody for a while, you start to take them for granted. It's true. Tomorrow Ben and I will have celebrated ten of his birthdays together.  And I haven't always been the best "birthday celebrator."  Gifts aren't my love language, so I've been known to not get him a gift.  Yes, I've been that person who just gives "coupons," which are apparently really bad for your relationship because the receiver never cashes them in, and then when they try to cash them in they never get their prize.  This is true.  I've lived it as the coupon giver.  Don't let anybody try to give you coupons.  

Thinking back to some of our middle years together, the years where the luster of a new relationship has dulled somewhat, I do feel bad about some of the birthdays when I didn't properly fete Ben. And I've been trying to make it up slowly, year by year.  This year will be no different.  Ben's birthday is on a Saturday so I have no choice but to make it great, from start to finish, from top to bottom, from morning to night.  That's my goal.  

Ben, you know I've never been good at birthdays.  But thank you for seeing past my faults and mishaps when it comes to celebrating them.  Thank you for loving me anyway.  I'm just so happy you were born.  I want nothing more than for all your dreams and wishes to come true and prayers to be answered in your last year of these crazy 20s.  You're a "grown-up," baby. Much Love, your adoring Wife.

Celebrating our 1 Year Anniversary on Assateague Island

Wednesday, July 9, 2014

How to Be an Irresponsible Adult/Overdose

I’m sitting in my living room writing this post with a blanket draped over my legs and a sleeping cat taking up half the couch.   It’s been like this for a couple hours now because I left work early.  I left work early because I’m an idiot.

It all started two days ago, when I went to see my team of hospital doctors to have them review my annual kidney biopsy and my current medications and blood levels.  One of the drugs I take, Tacrolimus (aka Prograf), is an immunosuppressant that is supposed to be maintained at a certain level in my bloodstream.   So I have get blood drawn regularly to make sure the level is acceptable.  

I’ve had issues with my Prograf level since I received my new kidney.  One day it’s too high, but most days it’s too low.  According to the hospital pharmacist, some people have to be on a higher does than what is considered normal.  I’ve taken 2 milligrams twice a day and I’ve taken 12 milligrams twice a day.  I’ve even taken zero milligrams in a day!  That’s bad.  Don’t do that.  

After my most recent lab reading, my doctors determined that my Prograf levels were a little low so they prescribed me with the drug Ketocanazole.  It’s used to treat fungal infections but nephrologists may prescribe it to help raise a transplant patient’s Prograf level.  I remember the first time I took it, about eight months ago, that my mail order pharmacy almost put the kibosh on me ordering it because of it’s interaction with Tacrolimus.

After my most recent appointment, my nurse called to let me know that she’d sent in an order of ketoconazole to my pharmacy because my Prograf level was, of course, running a little low. She told me to start taking it in the evening.  So that night, as I was preparing to take my evening medication, I remembered that I hadn’t stopped by the pharmacy to pick up my prescription. But OH! Resourceful me discovered that I’d had some leftover from the last time I was prescribed ketoconazole.  It said to take one pill twice daily. So I popped my first pill, got into bed and when I woke up, I popped another one.

This is how you listen to your gut:  If you’re having hot flashes, and shaking like a crack addict looking for their next hit…you probably took too much medicine. Pounding headache?  You probably took too much medicine.  If you go to work and are sitting at your desk thinking you’re going to vomit and then you calmly retreat to the bathroom and proceed to actually vomit…you probably took too much medicine.  

After emptying all of the Chai tea and oatmeal from stomach into the toilet in the handicapped stall of the 9th floor women’s bathroom, I called the hospital.  

Me: Hi Nurse…Ummm…I got your message yesterday about the ketoconazole.  Ummm…how much was I supposed to take?

Nurse:  Half a tablet, twice daily.
Me:  Ummmmmm OK.
Nurse:  Yep, why?
Me:  I took too much.
Nurse:  You did? How much did you take?
Me:  Umm, two full tablets.
Nurse:  Two tabs?!  What did the instructions on the order I called in to the pharmacy say?

Me: Oh..about that…I just took some of what I had left over from last time.  

During lunch, after eating next to nothing, and staring into sunshiny space while sitting in my company’s courtyard, I made the decision to leave work early.  It’s much easier to starve and feel nauseated  and be on edge from my couch or bed than it is while sitting at a desk with the office A.C. blasting over my head.

One BIG lesson I’ve learned about my transplant medicines is that you just have to go with the flow.  One minute everything’s fine, the next minute you’ve contracted some disease and have to go back on antivirals, or you suddenly aren’t producing any bone marrow and you have to stop taking this or that.  When you have someone else’s body parts living inside of you like I do, anything can happen.  And you have to be prepared for that, have a lot of patience, and a lot of trust in your doctors.  I have nothing but love for my doctors so if they tell me to take something, I usually don’t put up a fit.  Unless, it’s a shot.  Even after seeing so many needles and having a tube in my stomach I still DESPISE shots.

How has your week been?

Tuesday, July 1, 2014

Happy Fourth

"Summer afternoon—summer afternoon; 
to me those have always been the two most beautiful words 
in the English language."
 ~Henry James

New Posts Monday