September is Here

It's September.  Everyone has started back in school, and even here in CA we got a respite from the heat.  Not sure how long it will last, but it's nice.  While everyone is going back to school, I am at home trying to get my writing muscles in shape after a few months unplanned hiatus.  We will see how that goes.  Maybe in a couple of years you'll find me in the best sellers list.

My niece celebrated her second birthday yesterday.  She is growing so fast.  I still have a framed photo of the the first time I held her perched on a shelf in my library.  Now she's running and learning new words rapidly.  I'm excited about what the future holds for her, and pray each day that I get to live to see her grow up.

I must say the party was great.  My brother in law is great when it comes to preparing food and his daughter's birthday was no exception.  The cake was a cool creation by a family friend (she owns a cake business in town).  My niece was showered with gifts.  I have to say that there was a nice balance between toys and clothes.  Of course her final gift (provided by my mother) was the star according to my niece.  My mom had found a bicycle that was my niece's size.  The little girl wanted to test it out as soon as she saw it. 

When I finally got home, I took a three hour nap.  I guess the heat of the day got more to me than I thought.  I miss the days when weather really didn't bother me.  And if I did get hot, the hose was enough to provide relief.

For the rest of my Labor Day Weekend, I plan on staying home and possibly vegging on sci fi movies.  Haven't done that in a while and I'm in a Stephen King mood.  If tomorrow is cool enough I might even treat Mick to a walk in the park.  If there's mud, he'll be one happy puppy.

Been Awhile

I know I've been MIA for awhile.  Had quite a bit on my plate.  Luckily, it wasn't all CF stuff.  I went back to school.  Finally finished the last class I needed for my degree.  I won't get my degree for a few months, but all my requirements are finished.  I can now breathe and seriously cut back on the studying.

My family through a surprise party to celebrate my finishing school.  I think we were all happy that I finally pulled it off.  Took me ten years, but I did it. 

Now that I'm done with school, I've been spending more time with my adorable niece and doing my crafting.  Let's just say I can't wait for winter to hit, because I've made some cute winter pjs and a cozy looking robe.  Besides all my crafting, I've been getting back into the church.  Don't worry, I have no plans of getting all preaching on here.  I just figured that it was time for me to stop being so wishy washy.  And I was sick of having flaky people as friends (I am not referring to you guys Mary, Darin, Patty, and Joven).  I guess I just hit that point where I wanted more meaningful friendships and a better relationship with God.  So I dropped a lot of burdening friendships (literally my phone book looks kind of thin now) which also means I cut a lot of stress out.  As for the friends I chose to remain in contact with, well they're the ones whom I have to call real friends.  We share ups and downs, special events.

So now I'm trying to get back into the groove of things.  Get back to writing and being consistent with blogs.  So hopefully you all can bear with me while I try to get back into it all.

If You Try to Relax...

What I had planned on being a couple of relaxing weeks, did not turn out that way.  Mostly, it wasn't a bad thing.  I just wanted to do absolutely nothing for a bit. 

Last week, I ended up having to take my dog to the vet.  He was acting all drunk like that Sunday and then just started shaking.  After a few nights of no sleep, I took him in to the vet on Wednesday.  Since I'm new to the area, I hadn't established a new vet for my dog.  So Tuesday I was doing a quick search to find a good vet nearby (I don't like to travel more than 15 minutes for a vet, just in case it's serious).  Upon finding one I had to schedule an appointment.  The soonest I could bring my dog in was early Wednesday morning.  Luckily, it turned out to be nothing life threatening.  My dog had managed to hurt his hind quarters in some way.  He was in a lot of pain, but nothing permanent.  The vet prescribed doggie pain killers (this is after she twisted him into a puppy pretzel).

You would think that I would get to sleep now that my dog was drugged up, but no.  My sister's graduation was that night.  So I had to attend that.  She completed a very difficult program in two years (only eight people graduated), so it was a big deal.   The department put on a nice dinner for the graduates and their families.  I devoured a prime rib (with class of course).  I was able to have some quality time with my goddaughter that night as well. 

After the graduation, still no rest.  I needed to finish up my sister's grad gift before her party.  Since she's into Asian designs I made her a hair clip with feathers.  I also made a birthday for a friend of mine.  Photos will be posted on Creative Yarnings.

Saturday was the big party.  I had the job of watching my niece while everyone set up (horrible job, I know).  She's quite cute.  She was fascinated with the cows.  She kept running to the fence and mooing at them.  She collected leaves, ate strawberries, and just plain ran around.  It's fun spending time with her, because the world is still a new place.  She has to see everything and there is so much, she runs from place to place.

Once the party started, all the grandparents wanted to take care of my niece so I went back to talking with the other guests.  The food was great.  And there was tons of it.  I ate so much, I thought I'd burst.

My mother and I did not get home till close to midnight, that's how long we stayed at the party.

This week was a little more relaxing.  I did have a doctor's appointment but that will be a different post.

I almost have all my stuff unpacked from moving.  It's kind of nice not having to search through boxes for stuff.  A few things have vanished.  I'm guessing a box fell off during transport.  

I received Cayston.  After only a week on it, people are saying I'm more energetic and have more colour in my face.  I just notice that I'm more hungry.  Not sure if it's the Cayston, or if I'm just starting to come back up health wise.  Either way it's nice.

That's everything in a nutshell. 

Who's the Expert?

I saw my normal CF team on Monday and woo hoo no insulin.  Actually, it's more like no insulin for the next six weeks.  I'm supposed to monitor my sugars and then we'll discuss what to do at my next appointment.  Apparently, falling asleep right after an injection is not a normal reaction.

Also, my A1C is at 6.1 which means I'm pre diabetic, not diabetic.  At 7.0 I will be diabetic.  So I'm not really sure why the doctors in Stanford put me through so much headache.  I am aware that if I go through with having a transplant, I will become full blown diabetic.  So that is something to think about.

My weight is down.  So it's back to increasing those calories, all the while trying to get back into shape.  Not an easy task.  My doctor said that if the insulin wasn't putting me to sleep, he would recommend my staying on it for the weight gain (insulin can be used as a growth factor).  But falling asleep makes it hard to work out :o)

My PFTs are up by a smidgen.  But they are up.  So that's good news for me.  And to top it off I get to start Cayston!  I have to wait for it to be delivered, which I was warned it can take a couple of weeks.  But I get to start it.  Hopefully, it'll put off my needing a transplant for a while longer.

Some bad news.  Someone got the crazy idea that the FDA should approve the pancreatic enzymes that most CFers need for proper food digestion.  Problem is, not all brands are created equal.  I spent years trying different brands until finding Ultrase.  Ultrase is the only one that works for me.  With other CFers, it's the same thing.  They have a specific brand that works the best for them.  The FDA has only approved three brands and Ultrase is not one of them.  I have about two weeks left of my enzymes and then I'm going to have to switch to a brand that is sub-par for my body.  This really sucks.

I guess someone from Stanford complained to Davis that I act like I'm the one running the show.  It's kind of funny really.  What adult CFer does not act like they are running things?  We spend so much time at appointments, in hospitals, having to monitor ourselves that we know what's going on.  Sometimes before the doctor even figures it out.  A doctor's power is dependent on the patient's willingness to adhere to the treatment plan.  I'm not going to go through with a treatment unless I fully understand what it is for, what the side effects are (long and short term), and what symptoms I need to look out for.  Doctors may be experts on the disease, but we are experts on our own bodies.

The Great Escape

Finally came home on Friday.  Problem is with coming home is that I spend close to a week just recovering from the hospital stay.  I'm still on IVs, but I've pretty much recovered from my stint at Stanford.

Saw an endocrinologist while in Stanford.  She put me on a sliding scale for insulin injections, and I have to do carb counting.  Carb counting means that I have to count every gram of carbohydrates I will be consuming during a meal and then I adjust the amount of insulin to inject.  Since I have an extreme fear of needles, injecting myself is impossible at the moment.  My mother has to give me the shots.

My other issue is that the insulin makes me exhausted.  I told the doctors at Stanford and they claimed that it wasn't the insulin.  I even told the endocrinologist and she didn't think it was the insulin.  I just find it strange that I can't even finish a meal before falling asleep after I receive an injection.  And this happens every time.  I have notified my own doctor.  Hopefully, he'll have some answers or can refer me to someone who does.  I did speak to the nurse there and she said my falling asleep after taking the insulin is not normal.  Especially since my sugars are in the normal range after taking the stuff, there shouldn't be a reason for me to be tired suddenly.

Another plus to being at home is that I get to use my own glucose monitor.  The one at the hospital requires a lot of blood for a sample.  The nurse literally had to squeeze my finger until the blood was dripping before the monitor would read it.  If I had stayed there any longer, I would have been bled dry. 

My glucose monitor at home is the Freestyle.  It takes a tiny sample of blood.  I mean a paper cut would produce too much blood for this thing.  I like it though.  I can take samples from my arm instead of my finger and it barely hurts.  For me that's a good thing since I use my fingers for a lot of stuff (sewing, typing...) and the pain from stabbing them everyday would be too much.

I didn't start with the Freestyle.  My first monitor was an AccuCheck.  I hated the finger sticks.  My fingers were so sore.  A close friend of my mother's is a diabetic nurse and she gets free samples of monitors all the time (companies want her to recommend their products to her patients).  We had gone over to talk to her when I was first diagnosed with CFRD to get some information and tips on what to do.  By then all of my fingers were pretty sore and I was holding off on my favorite hobbies.  So this nurse had me try one of the Freestyle samples that she had.  I really liked it, so she taught me how to use it and arranged for me to get one.  So six years later, I'm still using my Freestyle.

Since my IgE levels are going down, the doctors did lower my prednisone.  I was so happy.  I'm not a fan of prednisone and do all I can to avoid having to take that medication.  It makes my mind race, me feel like I'm starving, messes with my sugar levels, lowers my bone density, and probably a list of things I'm not aware of.  So getting my dosage lowered made me very happy.

Now I am home.  Sleeping in my own bed.  Eating my own food.  Playing with my own dog.  And I get to see my own doctor on Monday.  Life is as it should be...for now.

Lock Up Day Six

I am on day six in Stanford hospital. The level of care is still extremely good. Kind of surprised at some of the services offered here. Patients are offered massage therapy. CFers get two sessions a week for free. Haven't had a chance to take advantage of it with everything else going one, but it sounds cool.

I don't think the doctors are used to argumentive patients.  I'm not saying that I am purposely arguing.  I just want to be sure that we are all clear on what I think about treatment, and what I am willing to do.  One doctor actually told me that this wasn't a negotiation.  I know they are doing their best.  And I haven't told them about my science background (wanted to see how I was treated if, they assumed I didn't understand beyond basic biology).  So they probably don't completely understand why I want a better explanation before agreeing to any treatment.

One doctor did answer as to why I feel pain in my port area even though it's been close to three years since the surgery.  Nerves get damaged during the surgery (they have to make a pocket for the port) and they never completely repair.  So every once in a while there will be extreme pain in the surgical site.  Sort of like the nerves having a flashback of the surgery.  It all feels very real, and the pain is real, it's just that nothing is currently cutting into the area.

Somehow broke my bed yesterday. First the foot got stuck in the upward position and it took awhile to get it to go back down. Now the head won't come up. I had to laugh. Most people "break the bed" doing extra curricular activities. I break one doing CPT.

My sister took a few days off and came over to Stanford to stay with my mom. It was nice having her. Someone to tease always helps the healing process. Her being here also helped my mom out. She didn't have to go back to the hotel alone, and my sister is good at providing a sympathetic ear when needed.

Unfortunately, my sister had to go back home today. She had a boyfriend, dog, and job to worry about. The joys of being an adult.

They brought in a bike for me to continue my workouts. I was so excited. I just hate the fact that no matter how far I build myself up, the moment I get sick I have to start the workout process all over again.  This time though, I am starting the process while still in the hospital.  Maybe that will help the rehab time.

Have had to deal with some issues.

My blood sugars keep going up, so I'm supposed to speak with an endocrinologist sometime today to find out the best course of action for me. I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) a few years back, but my diet and lifestyle were enough to keep it at bay (no need for insulin at the time). Now it's looking like I might have to start taking insulin. So far my sugars only spike up on prednisone days. Non prednisone days show my sugars to be low. So I'm guessing that if I do have to start taking insulin it will just be on prednisone days.  I'll just have to wait and see what the endocrinologist says.

The whole concern about all this is that if I go through with getting a transplant, some of the anti-rejection medications will put me at higher risk for diabetes. This doesn't take me out of the consideration process, it just means that there's something else that needs close monitoring to ensure optimal health.

Personally, I'm still praying for a miracle that will give me another ten years with these lungs.

In Lock Up Once Again

Well, I went to Stanford for the Pre-transplant evaluation. The trip did not turn out like I had planned. It was supposed to be four days of testing with me returning home on Friday. I was planning on giving a full run down on the pre-transplant testing process when I returned home. That has been postponed for now.

Things did not go as predicted. The first couple of day went fine. I was feeling pretty good. Not run-a-marathon good. But walk around without gasping good. By Wednesday night I was vomiting. Thursday I was sent to the ER with a fever of 102.4F and a heart rate of 145 bpm.

It was a little intimidating being sent to a hospital that I am unfamiliar with.  I am used to going to a hospital where my doctor has pull.  He's the type who will meet his patients in the ER and start issuing orders for patient care right away.  So not having him there had me a bit anxious.  I didn't know how the doctors were going to be.

Since I was in Palo Alto, I was sent to the Stanford ER, not the UC Davis ER.  The ER staff was very good and worked hard to diffuse a stressful situation.  I was sent to the Peds section of the ER since the peds doctor was the ER dr who was familiar with CF.  They had a flat screen TV in the room with movies.  In the hall was a cabinet with stuffed animals and colouring books (it was locked of course).   I was sent for X-Rays, Ultrasounds, and blood work to find out what was going on.  By evening, I had stabilized and was sent to a private room on the Cardiac ward for observation.

I was nervous about being sent to a floor, since quality of care seems to change according to the ward you are on when it comes to being in UC Davis.  So I wasn't too sure about Stanford Hospital.

The care on the Cardiac ward was great.  Someone came to check on me regularly, and call lights were answered in a timely manner.  I was very satisfied with my care on the Cardiac Ward.

Friday evening I was moved to Stanford's CF ward (where I am currently).  Yes, Stanford has a CF ward.  Davis doesn't even have that.  And CFers get offered two massages a week during their stay!  Pretty cool.  So far I have not been disappointed by the quality of care provided by the staff.  If my nurse is unavailable to answer my call an assistant comes in to handle my needs.

I actually have a view from my window.  Not just some bare walls and some wires.  I can see trees, grass, and sky.  From the Cardiac ward I could see the fountains.  I have a flat screen TV in the room.  The resolution isn't top notch, but it is better than other TVs I have seen during my many hospital stays.  Patients are provided with Movies on Demand, internet access, games, and cable all from the TV provided.  Pretty nice set up.

RTs don't complain when you ask for manual CPT.  And they don't complain about how much time your treatment takes to complete.  Treatments only occur during waking hours unless you really need a night treatment.  That's more of a doctor decision than an RT one.  It is kind of nice being able to sleep through the night though.

Housekeeping asks your permission before coming in to clean.  It's not like I'm going to say, "no," I like having clean room, it's just nice having someone ask before invading my privacy.

The staff always knock before entering.  It gives a small feeling of control over my environment.

The doctors seem competent.  They don't act stuck up.  And they definitely don't act like the Dr. House.  But they keep that boundary between doctor and patient, which I find frustrating.  They don't act arrogant about it, but they have this idea that I should listen to whatever they decide without my own input.  So it's a little annoying. 

I did insist that the Stanford doctors keep my own doctor in the loop.  He knows my record and what's the best course of care for me.  If they don't want to truly listen to me, I hope that they listen to him.  Else they will end up finding out how much of a problem patient I can be.

Monday, I will be doing a PFT.  Hopefully, it'll turn out well and I'll be allowed to go home.  While I have been treated quite well here, I would rather be somewhere familiar.  Besides, I miss my dog.