What's next?

Tuesday morning did not go as planned.  My doctor decided she did want to do conscious sedation during the procedure, so I had to get an IV placed.  The nurse blew the first vein but got it in the other arm.

I've never had to take out my contacts for conscious sedation before, so I was unprepared to do so, leaving me nearly blind the rest of the time I was at the hospital.  They wheeled me back and the last thing I remember was looking at the lights on the ceiling thinking "I wonder if they've already given me something" and just then the anesthesiologist says "you're going to feel some medicine"..... An hour later I am back in my bed, first thing I do when I open my eyes is say "Did it work?" and my doctor just shook her head.  Cue groan, roll onto side, pull covers over head.

What I found out later was that my doctor tried unsuccessfully to locate my fallopian tubes for 30 minutes.  This whole procedure from start to finish should take only 5 minutes.  Because it's the wrong time in my cycle (thanks to insurance and administrative errors delaying us), my uterine lining was too thick to have good access to my tubes.  Usually a patient is prepped for this procedure with 30 days of hormone treatment to thin the endometrium, but because of my previous history with blood clots, I wasn't able to do this and we tried to time it with my cycle.  Now my options were to try again in 3 weeks and hope it goes better or to have a Lupron Depot injection and try again in 3 weeks.  The injection suppresses estrogen production and prevents endometrial tissue growth.  Thus for the month that the injection is active I will experience menopause symptoms: hot flashes, emotional lability, night sweats, headache etc... I opted to go with the injection because I would rather only do this once more than possibly twice more.

After a shot in the booty, I was on my way.  My doctor gave me a hug yesterday and told me "You might hate me, but it will be worth it"... I hope she's right... about the being worth it part.  I hope this works!  So far I'm not a raging bitch, my right cheek is just a little tender.  I'll give it a few days before I decide whether or not I'm willing to do time for homicide.

Loaded Update

The past three weeks have been extremely busy and I will do my best to cover it all!

The Big Decision


I've always been uneasy with the idea of having children, knowing that as someone with CF, I would be passing on a copy of one of my defective CFTR genes.  After several years of thought, I've come to the decision that I don't want to have children of my own.  I don't need to elaborate on all of the reasons here, but this is what I've decided.  My doctor and I have decided that I will undergo an Adiana procedure, which will block my tubes off (similar to tubal ligation, without any incisions) and prevent pregnancy.  I'm actually very excited about it.  It's something I've wanted to cross off my list of things to worry about and now I finally get the chance to do it!  I wonder if this will earn me a Darwin Award?


Drugs


When I was admitted several weeks back, I had made a decision to stop taking Ambien.  I have been taking it for over three years and do not want to be on it anymore.  I had my last half of a pill the first night I was in the hospital.  Going off sleeping pills in the hospital turned out to be a great plan because they were getting me up at 5:30 in the morning for my first CPT, and I didn't have time to take naps during the day.  I was ready for sleep at night and slept well, despite the fact that people were in and out of my room through the night.

A little over two weeks ago I also began tapering off one of my two antidepressants (Remeron).  know it will take several weeks for my body to adjust, and when I go back for another check-up, we'll discuss going off the other one.  I feel like right now is the best time for me to be ridding my pill box of unnecessary pills and my relieving my liver and kidneys of extra work.  Post-transplant immunosuppressive drugs are very taxing on these organs, and the fewer medications I have to take, the better.  I feel like I was put on antidepressants prematurely, at a time when I was just learning that I would need a lung transplant, at the age of 21.  I don't know whether it was time or the drugs that eventually had me less terrified of the prospect, but I feel like now I've developed sufficient coping skills and healthier outlets for the many emotions that accompany chronic illness.  It's time to see if I can fly solo!


Exercise


Right before I left the hospital, I began using the pedal machine to get my legs ready to hit the ground running (or walking).  I joined the dailymile (friend me on there to follow my workouts!) and got three in before I was discharged on the 29th.  I expected to have extreme exhaustion and muscle fatigue accompanied by lots of low blood sugars after I got back to my normal routine at home, but experienced none of those things at all.  I'm not complaining!


Lungs

I went home on 1 week of IV vancomycin, which was manageable.  I do feel TONS better than I did when I went into the hospital.  I'm still having occasional pains in my lungs, but not constant or consistent.  Ibuprofen seems to take care of it.  They are staying clear and for the most part I feel well!


Halloween


For Halloween this year, I decided to go big - Lady Gaga.  I'm making my costume for the first time ever.  I don't know how to sew but I do have a vague idea of how I'm going to go about this outfit.  The shoes are finished and they took me about 8 hours to do.  I will post more pics as it progresses, but here are a few teasers.

Flash Me Friday!

Ok, I thought I'd get in on the fun since I enjoy everyone elses' flashes so much!

The view where I live (today):

To the southwest

To the southeast

Down (obviously)

test

testing email blog update

The past two weeks

I've been working harder to control my blood sugars the past two weeks, and it seems to be making a difference.  My trend line has been lowered by about 50 mg/dl, which puts me in the 150-225 average range, instead of the 210-250 range.

Progress, not perfection!

A couple weeks ago I was beginning to feel pretty punk, and went to the doctor.  My PFTs were only down a little, which shocked me.  I was expecting to have to be admitted or do home IVs at the very least.  We opted for a couple oral antibiotics instead, and I finished them last week.  I have to admit, they really did help.  But now I'm not sure if I'm going downhill again.  My left lung (just to the left of my sternum) has been hurting pretty badly at times and has been getting worse, not better, as time passes.  It's not to the point where I need to see anyone about it.  Even in the past, when it's been nearly unbearable, they really can't do a whole lot for me.  Maybe I will just get some new lungs soon?

I exchanged emails with my transplant coordinator last week and what I was told was:

• they have done 16 transplants this year
• they have been quiet the past few weeks (no transplants)
• I am essentially at the top of my blood type list because the other people who are my same size, with higher lung allocation scores, have other factors which make them more difficult to match - therefore, they expect that I should be next

This news has stuck in the forefront of my mind.  I know that the holiday weekends are typically high organ offer times.  With every place I go, every thing I do, every thing I plan, I keep in mind that I need to be able to get my ass to the airport stat if I get THE CALL.  So no riding in other peoples' cars, the cell phone is always visible, and my bag is (still) packed in my car, ready to go.  I even have my digital camera with me (battery fully charged) so I can get lots of pictures to document my journey, because I may or may not be too excited to remember details.  

I continue to pray for my donor and my donor's family, because they will be experiencing a great loss just as I am getting the opportunity for renewed life. 

Day 2: If you are what you eat, then I'm a CARBOHYDRATE covered in CHEESE

Some things I ate today:
An entire box of Spirals Mac & Cheese (extra butter, half and half)
an 8 ounce block of cheese
more cotton candy

Blood sugars: 119 (fasting), 177, 208, 140

It just dawned on me why my tummy might be a little nauseated.  Maybe I will try to mix better things inside it tomorrow.  Right now, it's tums and a banana for a little bedtime snack.

Day 1: OPERATION NORMALIZE GLUCOSE LEVELS

Since I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) when I was 12, I’ve never been consistent with checking by blood sugars nor with doing enough insulin.  This is a graph of my levels since May 27, the day I got out of the hospital. 

My doctors want my blood sugar between 70 and 150 – at all times.  As you can see, it’s rarely below 200, often spiking dangerously high and bottoming out scarily low.  Terrible control.  And as you can see from the orange line, it’s been trending steadily upward all summer.   I’ve been lazy and complacent, and because I haven’t experienced any obvious ill effects, it’s easy to stay that way.  But the minute my kidneys fail I know I’ll be backpedaling faster and harder than I ever thought possible.  I know post-transplant I will need every bit of kidney function those little suckers can muster.  So today starts Operation Normalize Glucose Levels!  My mission is to test my glucose BEFORE every meal and to accurately count and portion carbohydrates so that I know exactly how much insulin I should be doing.

My fast-acting insulin guidelines:

1 unit per 15 grams of carbohydrate

Sliding scale:

1 unit for every 50 mg/dl above a glucose level of 150 mg/dl

DAY 1: Woke up this morning (barely, it was 11:30) and my blood sugar was 111.  Awesome start.   Rest of day levels: 134, 111(agian!), 100.  Success.

Some things I enjoyed today spike-free, because I counted carbs (accurately) and actually did the insulin:

Cotton candy

Gummy bears

A twinkie

Things I avoid, regardless of how much insulin it would take:

Regular soda (diet when I’m craving the bubbles, or just water – there’s a novel concept!)

Juice (though I do have a smoothie every once in a while)

The next challenge will be bringing my glucose monitor with me out into the world, and making sure I test before I eat.  Also, portion and carbohydrate estimation is another downfall of mine.  I been told, I’ve read the literature, but I still have no concept of how much is a cup of rice or how much is a tablespoon of honey, especially when I’m drizzling it into a cup of tea.  

In light of the fact that so many people are finding out about the Double Rainbow video, here are some pop references to the viral video

Today's Foxtrot in the Funnies

Not Perfect, but delicious.  So intense!

.  

Even THE NPH is into double rainbows.

Can he tell us?  What does it meeeeean?







and for those of you who haven't seen it yet, I give you "full-on double rainbow all the way across the sky"guy

Time for an update!

I have little to report on the health front.  Hot and humid weather causes me significant breathing issues, so I try to stay inside as much as possible.  Unfortunately, inside usually means sedentary at the computer for a gross (as in disgusting) amount of hours.  I'm in the middle of a reading ebb.  Not doing as much as I have been.  It's just too stinkin' hot.  I've been sitting in my room, enjoying my fan & my Scentsy flameless scented candles and collecting dust.  I do have a cat to entertain me, so here's what Zoe's been up to lately.

Pog-rich.  Yes, pogs ... I can't believe I still had (had, being the key word, as they went directly in the trash following this photo) these tucked away somewhere.  This photo taken in the style of Stuff On My Cat.  

Chasing her tail in a her new bukkit.

Harassing Skitter.

Annoyed that her scratching post has become my Helios resting station.

Found a bubble wrap bed.

Actually it looks more like a coffin.

Tuckered out.  Getting into so many things is exhausting when you're little.  

Hopefully this week will bring a call.  I'm very, very ready to get some new hardware installed.  My good friend, Cystic Gal got her lungs on Tuesday!!!  I got a text from her yesterday and SHE CAN BREATHE!  I'm so happy for her!  I'll leave you with one last photo of me, sporting my Cystic Gal t-shirt!  

Morbidly Pleasant

I'm sitting in my room, facing my computer.

To my right is a window.

I open it and let in all the southern light that I can.

Zoe seems to find joy in early morning sunlight, and I do, too.

     It's a recent discovery for me - before I wanted the shades drawn, isolating myself inside my man-made cocoon of artificial lighting, creating my own solstices, deciding when daylight ends or begins.

All the rest of my life is based on artificial supplements: my oxygen, my digestive enzymes, my bacteria fighting abilities, even the ability to effectively cough has been assigned to a machine.  Why not shut out the sun?  It will probably give me skin cancer one day anyway.  But why, then, does it make me so happy?  When the day is new and I'm resting in between the cool sheets, my body still hot from sleep, I feel energized, motivated; I feel "normal".  And then I roll over, that familiar urge to cough strikes without warning and I shoot up into "cougher stance".  I reach for the kleenex to spit and drop it into my bedside trash can.  I have everything I need within reach.  I hate that my life has come to this point, being so medically handicapped, that I have to alter my living environment to accommodate the necessities.  The nice thing is, once I'm thoroughly exhausted after doing my morning treatments, I can sometimes crawl back into bed and pick up where I left off sleeping or reading, with a napping buddy at my hip.

It's just morbidly pleasant.