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.

What's In An Experiment?

As a CFer, I get impatient when it takes so long for new drugs to come out. The whole process takes years. And sometimes the drug doesn't even get approval from the FDA. It's a frustrating process, when every day counts.

While writing up a plan for the exercise bike challenge, I thought about what makes a good experiment. Being a scientists, I know that a lot goes into the experimental process. An experiment must be able to be reproduced by another scientist and still have relatively the same results. What else makes a good experiment? I've decided to use the bike challenge as an example.

What is the hypothesis?

A good experiment needs a hypothesis.  The hypothesis doesn't need to be correct, it just provides direction.  For the bike experiment the hypothesis would be, "Performing aerobic exercise while inhalation of medication will improve lung function more so than performing aerobic exercise or inhaling medication alone."

How will the hypothesis be tested? 

Since the idea was presented to me in the form of an exercise bike, that's what I decided to use.  Also, in the case of CF females, some coughing attacks are really brutal on the bladder.  Sitting allows for more control and fewer "accidents."  Pulmonary Function Tests and O2 sats are a good way for measuring lung function.  PFTs measure how much air the lungs can take in.  O2 sats measure how much of that oxygen the lungs take in is actually going into the bloodstream.  Ideally, the measurements would be taken before starting the experiment and every two weeks during the experiment.

I chose Hyper-Sal for the inhaled medication because, again, that is what my doctor recommended.  Hyper-Sal is a good choice because it's a saline solution, relatively cheap, and I won't feel guilty if the hypothesis is incorrect (no way am I risking the waste of my Pulmozyme).


What are the controls?

When working with CFers there are several variables to consider: age, sex, lung function, medications, diet, activity level, etc.  Since it would be impossible to set controls for every possible variable, I'm listing the two controls that are absolutely needed.  One control would do the exercise bike according to the schedule provided, however, they would not be taking any inhaled medications during their rides.  Another group would stick to their normal routines.  No bike therapy added.  All participants would use the same brand and model exercise bikes.  They would all use the same brand compressor machine and the same brand nebulizers.  All participants would use the schedule provided by the experimenter.


What are the methods used?

Participants would follow a 12 week course provided to them.  They would use equipment provided to them. Every two weeks they would check in for PFTs and O2 sats.

Every experiment would have its results and conclusions.  Some conclusions include ideas for more testing.  Testing different medications or grouping people by lung function would be another way to try this experiment.  If the hypothesis was proved incorrect, then explanations as to why are in order.  If correct, then testing on how many times daily would provide the most benefit while still being feasible with a person's schedule would be needed.  Also, if the hypothesis proved correct experimentation would need to be done to answer why the hypothesis is correct.

Obviously, this isn't by any means a formal presentation of an experiment.  I thought it would be a good idea to give some insight on what goes into the planning of an experiment.  It gets more complex with new medications.

Bike Challenge

Life has a funny way of keeping you pretty busy.  In March I went back on IVs, had finals, and got the phone call to go to Stanford for Pre-transplant testing.  Quite a bit of stuff in such a short amount of time.

I will be in Stanford April 12-16.  I'll be bringing my notebook to give you an idea of what goes into the consideration process.

For now though, I thought I'd post about an project I am trying out.

While in the hospital, my doctor had me try using an exercise bike while inhaling my Hyper-Sal. Now there aren't really any scientific studies on combining exercise with breathing treatments, but if the wads I was hacking up are any indication, this is a subject worth investigating.

We know that exercise is good for our lungs. That's why I incorporate it into my daily life. When I'm sick, I take brief walks. When I'm healthy, I hike, bike, and swim. Inhaled medications are also important for maintaining our lungs. What happens when you combine the two together?

I know immediately, I start hacking up wads. But what about long term? so I've decided to try a little experiment. You are welcom to join me on this little test. In twelve weeks I'll be posting the results.

Here, I have outlined my mini experiment.

Equipment:

Exercise Bike

Pulmo-Aide with nebulizer

Hyper-Sal

Methods:

It would be gereat to start this after a doctor appointment so you know your current lung function and O₂ sats.

Do your treatments as you normally would. When you get to Hyper-Sal, hop on the exercise bike and go at a steady pace. The bike and Hyper-Sal should be done twice daily (every 12 hours).

Week 1:

Bike for 5 minutes twice daily while inhaling Hyper-Sal.

Week 2:

Bike for 10 minutes twice daily while inhaling Hyper-Sal.

Week 3:

Bike for 15 minutes twice daily while inhaling Hyper-Sal.

Week 4:

Bike for 20 minutes twice daily while inhaling Hyper-Sal.

Week 5-12:

Bike for 20 minutes twice daily while inhaling Hyper-Sal.

During the 12 weeks, record your lung function and O₂ sats from each doctor visit. Keep the rest of your routine the same.