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)

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 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.  

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.   

This is MY History

What you see below is a plot of my actual pulmonary function results over a span of 11 years.  This is a graphic representation of the decline pattern of my unique case of Cystic Fibrosis.  On the graph there are two lines.  The blue line shows the Forced Vital Capacity (FVC) and is measured in liters.  It shows how much air I can exhale out of my lungs to indicate how much capacity I have.  The red line shows the Forced Expiratory Volume in the first second (FEV1) and is also measured in liters.  People with healthy lungs should be able to exhale about 85% of their entire capacity in the first second of forced exhaling.  Simply put, the FEV1 is the most widely accepted indicator of the lung function in a patient with Cystic Fibrosis, where as, the ratio between the two numbers tells how elastic (or scarred/inelastic) the lungs are, which is also important.  

Some Things to Consider When Reading the Above Graph:

The pink line indicates the period of time when I was still riding horses and playing tennis regularly.  As time moves forward, I played tennis less but increased my riding.  In the end of my riding and showing career, I was on at least one horse 6 days a week.

Between the orange hash marks, I was attending college.

The yellow dots represent the day I quit drinking alcohol.

The green circles represent the day I had my gall bladder removed.

FVC All-Time
High  3.44L 3/02/02
Low  1.22L  3/16/09

FEV1 All-Time
High 2.49L 12/23/03
Low .62L    7/11/06

I was evaluated for transplant in May 2008 and was listed June 11, 2008.

One interesting fact is that I had completely quit doing airway clearance therapy or chest physical therapy just before this graph begins.  I didn't even own a vest until September 2005.


I know that the combination of the end of my riding career (the end of exercising) and being away at college (slacking on treatments, drinking, staying up late etc.) had a huge effect on the ability of my lungs to maintain function.  Had I known that any of these things would have such a consequence on my health, I would have done it all differently - but what's done is done.  The only thing I can do now is share my story so that others don't make the same mistakes!


Lessons I Learned (and I hope you will, too!)

1. Do your CPT, airway clearance, acapella, flutter, vest, whatever you do - just DO it! I spent more time coughing during the day when I wasn't doing these things than I would have if I'd just taken a half hour a couple times a day to sit down and make an effort with whatever method I chose.

2. Get out of breath.  Whatever activity that gets you up and moving, something you like, keep doing it. It's much harder to get back strength and function after a period of absence than it is to continue maintaining.  If you have to wear oxygen, make it happen.

3. Alcohol in excess is an enemy.  It's a Central Nervous System Depressant, meaning it affects your breathing (decreasing the depth and frequency).  It may feel nice not to have the urge to cough while you're drinking - I felt normal, like I didn't have CF when I was drinking - but just as with other muscles we don't exercise, our diaphragms lose strength, strength that we need to cough and breathe deeply.

4. Acid reflux in Cystic Fibrosis is common.  I never knew my gall bladder could be to blame for some of the symptoms I was having, excessive bloating and shortness of breath (especially after eating).  After I had my gall bladder removed, I felt instant relief (once the pain subsided!).  I wasn't constantly popping Tums despite taking 20mg of omeprazole twice a day.  And I even gained weight, because I wasn't getting sick after eating or avoiding eating a lot because of the bloating.  If you're having issues with GERD, ask your doctor about getting some liver blood tests done.  If they show abnormal numbers, it might be wise to get your gall bladder an ultrasound.

5. When the doctor says it's time for IV antibiotics and a couple weeks in the hospital - DO it!  You don't get 4 airway clearance, all your IVs AND have time to live/work/cook/eat/clean/be a person at home.  Don't bother, it's more work than can possibly be done and you're supposed to be getting well!  So many times I opted to do home IVs and ended up more run down and tired than I would have been if I'd just gotten admitted.  I know it may be difficult to schedule someone to take care of the kids and the house or to miss work/school, but really, everyone wants you around for a long, long time, and if you're not doing all you can to make sure that happens, then you're not only doing yourself a disservice, but you're also hurting the ones you care about most.  It sucks giving up the control of your meds and time, to be woken up at all hours, to have a constant stream of people asking you the same questions over and over, to have really really bad food - but trust me when I say that I truly believe it is for the better.  The hospital doesn't JUST want your money this time.

6. If the doctor says you need to wear oxygen, DO it! (I think that's my new motto - Nike's not going to sue me are they?) So many times I've been too embarrassed to wear my oxygen in public.  I still struggle with it at times or certain places.  But, ultimately, it's just going to wear me down and do damage to my heart - the last thing I need is a lung AND heart transplant.



And here, despite everything, I feel absolutely wonderful.  I've made peace with the way things are, I don't regret the past, nor do I wish to shut the door on it.  I love my family, I have amazing friends and am connecting with so many awesome people in the CF community.  If you have a blog - I want to read it!  I want to know your stories, share in your problems and work together to find solutions.

I'll leave you with two pictures of me in my prime, doing what I love most in life.  One day, after transplant, I hope to be able to return to the show ring.

Left: Lexington, Kentucky 2002
Right: Columbia, Missouri 2003

Long Update!

I've been meaning to update this for a while now. So let me back track:


June 2nd I went back to the CF doctor here in Wichita for a 1 week post hospital stay visit. My lung function was holding steady (31%, 50%) I felt great.

The following Tuesday, the 8th my dad and I loaded up the car and made our way to Omaha. I watched the sun set over Lake Manawa, sitting at the end of the dock... a beautiful place to sit quietly and meditate, or just listen, not think. It was a very welcomed moment in what I knew to be a busy next few days.

Wednesday, the 9th I saw my ENT (ear, nose & throat) doctor, who did my last sinus procedure the summer of '09. My sinuses look about like you would expect a CF patient's sinuses to look - inflamed and butchered. I was glad to hear that they looked "normal" because my primary care doctor in Wichita was somewhat alarmed at my sinus CT scan - CFers know what I mean. After that appointment I saw the endocrine and CF teams at the hospital all the way across town. The visit was less of a check-up and more of an exit-appointment (although my PFTs were the higest they’ve been in over two years, FEV1 was 35% and FVC was 57%. I've decided that I'm going to transfer my CF and CFRD (CF related diabetes) care to Wichita, following solely with the center here, instead of both Wichita and Omaha. I'm torn about this decision for a couple reasons:

Firstly, it's no secret, but Omaha sees more individual patients than Wichita (larger population in the vicinity) - thus giving them an overall greater experience in dealing with a variety of cases and issues. It's always comforting to know that when you go to your doctor for a problem, he's seen it a million times and knows exactly what to do.

Secondly, I "grew up" under the care of the Omaha CF team. I began to get involved with my own care when I went away to college, I transitioned to the adult clinic about the same time, so I was really learning about CF in a new way, as an understanding and autonomous adult. When I go to the doctor alone, without a parent, they have to talk to me. I get all of their attention, focus, eye contact. I'm free to ask questions, joke, and bulid raport as the patient. When a parent enters the room, even if you can manage the dauntiung task of getting them to remain quiet, they automatically fall into the parent role, regardless of how old or competent the patient may be. They get half the eye contact, they get to ask questions, make comments, go off on tangents or tell semi-related anectdotal stories… ad nauseum. And the doctor humors them. What’s really happening is the parent is trying to gain back the control over their child’s disease and care. While I want to keep Mom and Dad in the loop, it’s important for me to maintain my independence in this area, even though I’m unable to be independent in other areas.

Those things aside, I know that splitting care between two centers is not as beneficial as it seems it should be. At first I thought that I might be getting the best of both worlds – but really, it was the opposite. The new center didn’t feel like they had the authority to act immediately, rather waiting for consult from the old center before prescribing anything, meanwhile I’m waiting to get IV antibiotics or a PICC line, getting frustrated myself, wondering what the hell is going on that all of this can’t be done sooner. Everyone ends up frustrated and touchy and the patient (ME!) suffers. I feel like now that this is settled, I really will be getting the best of both facilities, because Wichita is now the sole caregiver and we (as a team) are able to consult Omaha when there is a question regarding my history or anything else, without feeling like we’ve burned any bridges.

The 10th saw Dad and I on the road again, headed to Minneapolis. Early on the 11th I had appointments at the U of Minnesota. My PFTs were still the highest Minnesota has seen at 31% and 43% but down a little from two days before – goes to show how humidity, barometric pressure, air quality (car air) and allergies can affect pulmonary function from day to day, or even hour to hour. I wasn’t too disappointed in the dip.

On the 12th we headed back to Omaha and then Wichita on the 13th.
Later that week I got my Lung Allocation Score from my visit, and it was 34.93 - which I think is lower than it's been in the past. I didn't have a 6 Minute Walk test done while I was there, so I have to get it done here. I think that will help my score out, since I know I require more oxygen than I have previously. When I get that done and sent to Minnesota, they will update my LAS.

[Side Note: A 6 Minute Walk test is where you wear a pulse-oximeter which reads your pulse and the % oxygen saturation in your blood while you walk for six minutes. A respiratory therapist records your pulse, oxygen saturation, oxygen usage and distance every 30 seconds for the whole six minutes. This gives them an idea of how "disabled" you are. I think they should add a video element to the LAS. To see me cough gives a very clear picture of my dis-ease.]

Ideally, I would get called NOW and wouldn't have to do it! :) I was hoping that the holiday weekend might offer at least a call to me or my friend CysticGal - but no luck as of yet. She has had two dry runs so far. I feel like it's her turn. Or mine. I have been waiting for over two years. I told CysticGal that I feel like we are the last two to get picked for kickball. In all reality, that probably would be the case, since neither one of us would really have a lot to offer an athletic team. But that won't always be the case.

At the end of June, the CF community, nay, the world, lost a dear boy named Conner Reed Jones to CF. His mother shared via her blog, his passing, with amazing clarity and beauty. The world celebrated his life last Wednesday - all over people released red balloons for Conner. Red was his favorite color. His funeral service was even shared with the internet community. In it, his mother wrote the most beautiful and touching eulogy. Anyone who read or watched her family's journey would be touched. It's always sad to lose someone we love so much, especially a child, but her strength is a wonderful testament to her faith in God and in love - concepts which Conner knew well, despite his young age of seven. Which is why I released seven red balloons into the sky on Wednesday. Attached was a card, on which I wrote, so that whomever finds the balloons will know who Conner is and why he was so special. Watching the balloons float upward, I had to shed a tear or two - it was just that powerful.

That's about all for now! I need to do better at updating this - it worries people when CFers disappear for any significant length of time. I know I worry when I don't hear from my CF friends!

Home Sweet Home

Yesterday I broke out of jail.  No, not really, I would never call the hospital jail... let me start again.  Yesterday I came home from my amazing and health-restoring vacation.  It was a wonderful two weeks, full of educating the uneducated and, well, coughing!  I coughed so much more than any other patient anyone had seen.  That's how I get better! At least it made them feel like they were making a difference.  Some of the respiratory therapists who had me were shocked that I wanted CPT (chest physical therapy) longer than 10 minutes (or 1 minute per lobe/position)!  I was shocked that no one had ever requested it or taught them differently.  So what did I do?  Educated everybody who handed me a nebulizer (except for the two wonderful ladies I met who could have written the book on being a good RT: Mary Catherine and Diana R. - you ladies rock!!)  I was even asked one of the most ridiculous questions I've ever heard out of an RT's mouth: "Have you had CF since childhood, or did you acquire it later?"  I know he didn't understand that CF is a genetic disease, because he didn't ask when I was diagnosed or even when I got sick.  He asked if I "acquired" it.  Now, I posed this issue to a lot of other CFers and many say it's common to get that question - and this alarmed me.

From a Respiratory Therapist, that question should be automatic grounds for re-enrollment in school.  How can you take care of a CF patient properly if you don't know why they are there?  The patient has lots of STICKY (more so than healthy people) mucus in the lungs.  "But Justine" you may ask, "why is it stickier than healthy peoples' mucus?"  Well I'm glad you asked, it's because of a defective mutation (actually two, one would still produce the phenotype of a healthy non-CFer) in the CFTR (Cystic fibrosis transmembrane conductance regulator) gene which causes chloride channels to trap chloride, and thus attract sodium to neutralize them both into - SALT!

Now I digress to ask you a question: What happens when you pour salt on a slug?.... Yes, it dries up.

Now back to my lungs:  If chloride is trapped inside the excretory cells (lungs, sinuses etc), the salt forms and the water, instead of being freely excreted into the airways to form mucus, is not as free to flow because it is drawn to the salt in an attempt to create a homogenous salt water concentration on both sides of the cell wall.  Result: stickier (drier) mucus.

End of science lesson.

If an RT doesn't know CF is genetic, they wouldn't know that we have sticky mucus, nor why we have persistent lung infections (bacteria thrive in moist, dark, undisturbed places).  For all they know, we just have a bad cough, and they wouldn't be able to give us the kind of treatment we need, because they weren't aware of the root problem.

Please, the next time someone in the medical field doesn't know about CF, and should, educate them! Even if it's a simplified, two sentence explanation.  It's really sad to think about how many people aren't getting the care they need!  I know I am an overly involved patient, but you can't expect anyone else to be your (or your child's) advocate.



All in all, it was a great vacation.  My PFTs yesterday morning were an FEV1(function) of 32% and an FVC(capacity) of 51%!  Great, especially considering how sick I was when I went into the hospital.  My port is healed and I was given thorough lessons on accessing and deaccessing, even doing it once myself.  After two weeks it's healed very nicely, although it's still tender.  I'm hoping that as it heals, the scar tissue will solidify it's placement.  I took the advice of many other CFers with ports and cut a hole in a sponge to put over my port when using the vest.  I tried it today, and it's still too tender for that, so I have been unhooking the shoulder velcro.

Port

This morning I was awoken out of a dead sleep at 6 to my nurse flipping on the lights, "They're ready for you in 30 minutes."  It's port time!  I had them page respiratory so I could get an albuterol neb before they took me... gotta breathe, right?  The cute resident who came and talked to me yesterday was down in pre-op. :D He answered the rest of my million questions to the best of his ability - I'm a pretty involved patient (translation: control freak), so he wasn't really prepared to deal with me.  They wheeled me into the OR, I climbed onto the table and laid down.  They gave me some versed and started to wrap me up, "like a burrito".  The last thing I remember was muttering something about having a fallback career lined up at Chipotle.  When I woke up, I had some pain and a kickass incision near my shoulder:

 

A few hours later someone came to access it so I could start receiving my IV antibiotics through my brand new port instead of the peripheral IV they had in my arm (which are very painful for me!)

So there you have it! It was fairly simple and I can't believe I hadn't done it sooner.

Zoe has good taste in shoes

another appointment

I went to the clinic to give a sputum sample (aka, spit in a cup. yeah, i know, real attractive) so they can determine which organisms (viruses, bacteria, fungi) I have in my lungs. The main two reasons I wanted to have one done were a) because I wasn't getting over this cold I had been fighting and b) I wanted to make sure that I tested negative for a certain strain of bacteria (Burkholderia cepacia) which would make me ineligible for transplant.  And that would be BAD NEWS.

DVT

My arm today, the day after surgery (in the mirror). My left arm is almost double the size of my right arm because I have a blood clot (Deep Vein Thrombosis) near my PICC line.  They're going to start me on Lovenox injections (for 3 months) which REALLY hurt, and remove the PICC and place one in the other arm, since I'm not done with my IV antibiotics.

More Ink

I got 3 more tattoos today.  Gotta get 'em while I can!

The two words mean Truth and Justice in Latin and were stolen (yeah so sue me... but, really, don't) from the cult classic movie, The Boondock Saints, one of my all-time favorites.

 

The circle with the triangle inside stands for unity, service and recovery. 

The one on my back is the most meaningful and I got as a reminder and to bring awareness to others about Cystic Fibrosis.  I am just one of 30,000 Faces of CF in this country.  My struggles aren't unique and are not the worst.  There are so many who have not been as lucky as I have to be as healthy as I am.   I don't want to forget that.

My first tattoo

I finally got a tattoo today! I have been wanting one for years and decided that I'd better do it before I get my call for new lungs.  They discourage people who are post-transplant from getting tattoos because of the time it takes to heal.  They don't want someone who is immuno-suppressed to have any more wounds than necessary!

It's backwards, but it says Veritas, which means Truth in Latin.

2 weeks of IV antibiotics will end tomorrow! I went back to the doctor today and my lung function is back up to 30% (although I'd like it to be higher, I do feel a lot better) and my capacity is up to 45%. Not the best improvement, but good enough for now.
Company while infusing

I'm headed off to Minneapolis for my 6 (but really 8) month check up to keep my status current on "the list" It's going to be a long two days, especially becase we check out tomorrow morning and don't fly out until 9pm so treatments will be few and hard to come by tomorrow. Plus now that they've made flying really really difficult for people with oxygen, liquid medications, disabilities, that it will surely feel like two days from hell. I just can't wait to get back already!


I had company during a morning treatment

Zoe, sitting on the bak of my chair

Went to the doctor today and my function was down to 28%, but I've been feeling pretty good and able to do more daily things around the house. Aside from the off and on lung pains that can't be explained, I've not been too bad!

I have been a terrible blogger

I know it's been two and a half weeks since my last post, but I've been busy!

I have been feeling pretty well.  The last few days have been a little rougher.  Classes start back up tomorrow, so I hope that I'm feeling alright.  My back has been feeling better, but I still will be going to the chiropractor tomorrow to make sure everything's okay.  I've been pretty active between rehab sessions, helping with yard work at Todd's dad's house.  I even mowed the lawn (riding, of course) twice!  And the biggest news of all: We got a kitten!  

She is a gray tabby and about 4 or 5 months old.  We haven't officially picked a name, but I will post it once we have!  I need to get started on a treatment so I can get to bed early for my first day back to school!  It's going to be a busy day (buzzing around non-stop from 11am until 9pm)!  I'll try to write more frequently, I promise.