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. 

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 9^th 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?

That One Time I Missed Most of March Because of White Blood Cells

Oh Haaaaaaaay.  How has your March been?  Pleasant?  A bit cold? A bit boring?  Have you been sick for the past two weeks?  Have you been thinking, 'Oh maybe I just won't get better until April and will have an excuse to take the rest of the month of March off'?  No?  Really?! How bout that.

Well, I'm back to the world people.  I'm finally remembering what it's like to not lay in bed 24 hours a day.  I enjoy the taste of food again.  I enjoy fresh air and sitting in a clean apartment, sleeping on clean sheets, not worrying about how many additional viruses are burrowing their way into the mattress while I breathed hot, infected air into my pillow.  I am alive. I am not a zombie. I am real and I am on my way to healing.

If you came to this blog in the past two weeks, you probably saw nothing.  Nothing good anyways.  It's true.  I've been sick for two weeks.  And let me tell you:  I ain't felt death that near since this time last year when I was gearing up to start dialysis treatments.  And I wanted it. I wanted it so bad. I wanted to go home and be with Jesus.  Dance with the angels and break thermometers because I knew I would never need them again.  That's how sick I felt.  

Why and how in the world did I end up like this?  Well, you can thank my kidney transplant for that. I'm sort of joking but sort of not because it is kind of sort of relevant to how all of this happened.  

Remember when I told you that now, with my kidney transplant, I was going to have to take medicine for the rest of my life?  Those medicines are called immunosuppresants.  In case you missed biology (don't worry; pretty sure I slept through 80 percent of it) your immune system is what keeps you healthy.  It's [hopefully] made up of a bunch of white blood cells who's purpose in life is attack foreign objects and bacteria that make their way into your body.  Usually those foreign bacteria (stuff not made by you), can make you really sick if they're not dealt with correctly.  So most normal people have a good army of white blood cells who fight off these things and keep you from having to take any sick days, in case you were wondering why you never get a cough every once in a while.  I'm sorry, but this is probably it.

White blood cells are good for stuff like head colds and the flu.  But bad for stuff like organ transplants.  Because even though my kidney transplant is good for me and keeps me alive, it's still foreign.  So according to my WBCs, it needs to go.  And this is why, I take immunosuppressants:  to keep my WBCs from building up their army, so that they can't call out my kidney for being a foreign object.   The results:  my dad's kidney gets to live in my body as a spy forever, working alongside my natural organs....but I also am more at risk for contracting things like CMV. 

Cytomegalovirus.  In a nutshell, you probably have it because apparently 90 percent of the population gets it at one point in their life.  It just doesn't make everyone want to die because most people are healthy.  

For the rest of us--the 10 percent who randomly never got the virus and the immunosuppressed--when we are infected by this nearly harmless virus...it can make us feel like solid S&#T until we get treated for it.  

So, now I present to you:  five things I wouldn't wish upon anyone:

1.  Diarrhea.  

2.  Pain in your eyeballs so bad that you start to wonder if you have a brain tumor and regret that time when you didn't wash your hands for exactly 20 seconds before putting a new pair of contact lenses on.

3.  This weird thing in the upper middle part of your abdomen that makes you cry when you walk and also makes you think you have an ulcer and/or cancer according to WebMD.

4.  Sleeping for 24 hours.  Unless you're into that sort of thing, which I am only SORT OF into that type of thing. I love sleeping, but I don't love worrying about getting a blood clot that's going to travel to my heart and I won't know about until I'm on the plane to Greece.

5.  Cats who clearly don't understand "Noooo I DON'T want to get up!" when you're lying in your bed face down for the 15th hour in a row.  They seem to think: maybe I'll just meow LOUDER and then the human will move.  It doesn't work like that, cat.

I am finally starting to feel better people.  I'm eating again.  I went to the gym. I'm staying up late again.  Ben and I hugged for the first time a few days ago.  Things are looking up.   

 

 

UPDATE update

This is what's been going on in my life since we last talked.

I'm confident that I'll be back to 110 percent health before the month ends.

Or before ACTUAL spring weather arrives.

 

Happy St. Patrick's Day.