Western Medicine. Individual Care. WARNING: FU$K flows freely in this post

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America’s health care system needs revamping FOR SURE.  Consider having a terminal illness, pre-diagnoses, unable to get health care and when you do, the limits.  LUCKY for me, my mother works in health care so I have insurance.  I do not even know how people can AFFORD to care for a child with CF without insurance or with it!!!  I read CF care is 9 to 14x the normal.  We are in recession still…My heart goes out to those families suffering with or without CF.

My major gripe and ongoing frustration involves Dr.'s who treat patients like cookie cutters, Rx the same drugs to everyone and don’t listen to the INDIVIDUALs needs, concerns or lifestyle choices.  I am the one who has been in my body for 33 years, so I don’t know why Dr.'s think they know more about me then I do.  Especially when I go to clinic 1x a year for the past 7.   You think you kept me alive?  Gimme a fucking break.  Sure, I have CF and they specialize in CF, but I feel like I’m a fucking statistic.  I am an individual with specific needs and concerns and lifestyle choices.  Why am I given the same treatment and same preventative care plans when I have managed to keep myself ALIVE at a STABLE weight for 20 years, have no appetite issues, and no exercise challenges (besides laziness)? This whole western medicine thing makes me hang my head and cry.  I am an individual.  Don't pretend to listen if you aren't.

Let me just say, my parents have kept me alive, and I believe my choices to avoid the drugs and pills and change my diet have also extended my life.  There is something to be said for not LOADING up on IV antibiotics my whole life.  I took oral antibiotics, specifically CIPRO, for any kind of illness.  Last year my pseudomonas was resistant to it which isn't abnormal.  Antibiotics help MANY.  They kill deadly bacteria.  They save lives.  But at the same time, they deplete the body of it’s GOOD flora.  I have yet to EVER EVER EVER have a Dr. recommend or prescribe PROBIOTICS to go with the antibiotics.  In 2008, I thought I was going to die because my body had been depleted of good flora.  I took a round of antibiotics thinking it would HELP.  After,  I lost 20 lbs in a couple weeks, had severe diahrrea and overgrowth of yeast internally and externally.  It took seeing an acupuncturist, an herbalist and talking with a fitness professional to find out wtf was wrong and get my body back to normal.  When I figured it out and returned to the dr. to tell them all I needed was some probiotics, they say, oh yea, that would be helpful.  FUCK YOU.  You Rx Drugs.  But you fail to mention something that might kill me anyway?  Who gives these people a PH.D? 

My previous CF Dr. said something that sent me off the deep end and the reason I avoided the clinic for soooo long.  After an appointment in which we were discussing my preventative and current care, he says  “ I am a Dr. I prescribe drugs.”  FUCK YOU.  Another reason western medicine does not sit high on my list.  I am really trying to only make statements on EACH individual and not the whole of western medicine.  They have a purpose for sure.  My current Dr., who works with my previous Dr., doesn’t seem to have that "I prescribe drugs" approach.  But then again, I did mention I hate pills.  I only take antibiotics under SERIOUS situations yet I understand the need for western medicine.  My last Dr. appointment, I brought my man with me, so I “had a witness” and how the Dr. reacts to my needs and concerns.  I was very clear and told her, I’m not going to take a bunch of pills and antibiotics no matter how much she wants to say they are preventative.  So when I agreed to the treatments she recommended, I hardly expected an email 4 days later stating she wanted me to ADD an oral antibiotic to the regiment  ESPECIALLY, after me being so clear about my concerns and needs.  AND NOPE.  NO PROBIOTICS.  SO, I called the office and left a message to inquire her recommendation.  I have yet to get a call or email back.   Maybe she's on holiday.  I'll call on Monday.

When I met my new Dr. last year, I expressed my feelings about being an adult with CF, my approach and what I DON’T like about my previous Dr.’s approach, what I was willing an unwilling to do and my personal experiences.  She said she understood, but that PREVENTATIVE care was her main concern.  She also stated she didn’t know if it would be more helpful or harmful to load me with antibiotics because they do have side affects which weaken my lungs and since I am in such good condition, it was a fine balance.  Does that mean the last 4 PICCs have depleted my lungs so much that now I'm at only 100% instead of 130%?  Now I have to have yearly treatments?  Do I take the meds, or say fuck it and continue with my holistic herbs and continue to learn as I go?  How do I know what is working and what isn't working?  I'm taking this month of western meds.  I am on a continually learning path and what I see happening, is exactly why I never took all the meds before.  In past, I had a plan to follow the antibiotics with some regular routines to keeo my lungs at 130% and didn't follow through.  I won't do that again.  I think they are doing more damage then good.

Western medicine for most CF patients seems to be ideal.  That’s what I read in others CF Blogs and hear from the medical community.  What I have to say to that is, THERE IS ALWAYS ANOTHER OPTION.  DRUGS HAVE SIDE EFFECTS.  FOOD(or that crap we eat out of a box and call it food) HAS SIDE EFFECTS.  LIFE HAS SIDE EFFECTS.  Stress, anxiety, hormones.......all have side effects.  It is up to each individual how to deal with all of it.  You can so easily just do what you are told, but that doesn’t mean it is right or the best choice for you.  I'm learning on this path and will continue to tweek my choices to my body talk.


With that said, I'm starting a new section on my blog about interesting "facts" and what is good and bad for CF care based on my experience and readings.

I am taking the Western Rx daily inhaled antibiotics, hypertonic saline and vitamins.  I am also taking my self Rx probiotics.  I feel….fine.  No big changes.  It’s not even a week yet, so no worries.  I am having some rather annoying bowel issues which could be from the vitamins and the antibiotics.  I’m sure the drugs will take effect and I’ll be back at 130% shortly. 


In the meantime, back to the dance floor.

Pills, pills, pills, can you pay for my pills

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SIIIGH.  To think I have a mild case of CF and all those children and teens who suffer so greatly everyday with SO MUCH medication and treatments.  I am so blessed to be so healthy.  Everything is relative....

I’ve been coughing up loogies (AKA thick phlegm) for a few weeks.  The coughing is somewhat normal, the loogies, not so much.   I’ve been to the acupuncturist and been taking herbs, which are helping greatly, (finally got 8 hours of sleep last night) but because the cough is so harsh, I haven’t been able to work.  Then I get a random phone call from my CF clinic.  SHAAAA!  Last time I saw the Dr., in June of 2010, they put a PICC in my arm.  I put it in the air.  I said “I feel like shit,” and then the clinic calls.  The power of the word….watch what you say.

I’m really resistant to western medicine with all their colorfull pills and fancy knives, but I recognize the need to have regular care by a CF physician and some necessary testing.  I should at least hold up my end of the deal and make a twice yearly visit. 

I dislike the Dr. with a passion, not a specific Dr. (ok well a few), but in general.  Some hate the dentist, I prefer the dentist.  I’ve managed to only go to the Dr. once I’m already sick.  Not the best plan considering I have a chronic illness, but preventative care involves pills, needles, breathing treatments, vests and some other shit I hate.  Ok, so illness requires the same, but on a limited time frame.

I made my annual appointment at the CF clinic.  My Dr. sent in lab requests for 11 vials of blood, urine test and sputum (loogie) culture.  2 phlebotomists later and 5 sticks, they get their blood and I’m off to pee in a cup.  Then my dietician tells me we need to see how pancreatic insufficient I am.   Sometimes I feel like my life with CF just started. 

So what exactly are they looking for in my blood anyway?  Vitamin levels, specifically A, D, E and K.  Those are the fat soluble vitamins we CF patients are unable to absorb properly because of our pancreatic insufficiency.  We take a supplement (ADEK’s) to get those vitamins into our system.  It usually requires a digestive enzyme to break down and absorb the vitamin supplement.  That means I’m taking 2 pills instead of one.  Did I mention I hate pills?  Oh, and the enzymes are made from porcine pancreatic enzyme (pig enzymes) …uhh right, I just found this out after YEARS of not eating meat.  You’d think they would have mentioned that.  ERRRRR..  FYI, I haven’t taken any pills, except 2 superdoses (1 a week for two months) of Vitamin D and the occasional enzyme for the last year.  I did say I hate pills.

Other tests include blood platelets and calcium, which are responsible for clotting the blood.  Calcium and vitamin K must be present in blood to support the formation of clots (see above ADEK’s).  If your blood is lacking these nutrients, it will take longer than normal for your blood to clot. If these nutrients are missing, you could bleed to death.  The blood platelet count will rise when inflammation or illness is present in the body.  This test helped diagnose my autoimmune disorders: Arthritus

& Reynaud's Phenomina

I saw the Dr. today and the tests results are in:  LOW in all vitamins, especially vitamin D and A.  The plan:  2 months of weekly superdoses of vitamin D, 1x daily enzyme (found a vegetarian option) to absorb daily ADEK’s.  Did I mention I hate pills.  AHHHHH!  At least it’s minimal.

I took my Pulmonary Function Tests (western medicine).  Normally my FVC and FEV1 are about 130%.  Today, for the first time EVER my FVC was 135% and my FEV1 102%!  At first glance, to almost anyone in the CF world, this is flippin’ awesome!!!  Over 100% is a rare pulmonary function test.  But for me, that means my lung capacity has dropped 30%!!!!!  O HELLL NAAA!  This is a serious situation.  This means I have enough phlegm in my lungs that I am unable to successfully cough it up, blow it out or move it.  Who wants to start training for a marathon?  I need to start running again! GREAT STRIDES, here I come!

What is the plan?  THE DREADED ANTIBIOTICS!!!  AHHHHHHH!  I hate pills and a PICC line is out of the question so fortunately, I can get them via inhalation.  This is the Rx: One Month of

2x a day Albuterol (inhaled bronchial dialator to prepare for the next step); 15 minutes of inhaled Hypertonic Saline (7% sodium chloride), which will break down the phlegm so I can hack it out; followed by the antibiotic Tobramycin.  For a final touch, I’ll be drinking my homemade kombucha and BIO K to get those PRO-Biotics that replace the GOOD Flora the antibiotics kill.

Let me know if you want to take a run....

My Medical History in Brief

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My medical history is short compared to most CFers.  I’ve had very few problems and until the last 8 years, really didn’t even “face” my CF because it wasn’t a daily challenge.  I've had other medical issues I'm including that have nothing to do with my CF.

9/1978 Diagnosed with Cystic Fibrosis with a sweat test of 98 

http://www.cff.org/AboutCF/Testing/SweatTest/

7 years old:  Benign tumor removed from belly button.  All I remember is what looked like 7” long needle the surgeon inserted into my belly button to give me anesthesia which hurt like hell.  Next thing I can tell you is I had a little bump from that needle that I continually scratched….for years….creating a serious scar on my belly that looks like a lightening bolt.  Hard to see in this picture, but the dark circle is also from that procedure.

15 years old:  Sinus surgery to fix deviated septum and remove nasal polyps.  Plenty of NON CFers have polyps, but CF patients seem to have it MUCH more.  The average CFer I know has had this surgery 4x!!!  Me, 3x.

WHAT ARE NASAL POLYPS?

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002607/ 

20 years old:  Bunion surgery on right foot.  This was before new advancements.  I had a piece of the bone removed and the rest screwed back together.  I had knee high cast for 3 months, which didn’t stop me from driving a 5-speed with my toesJ

6 months after foot surgery I had sinus surgery to remove nasal polyps, AGAIN!  Complications required the surgery to be stopped and a week later, back under the knife!  O HELL NA!! 

25 years old:  Intussusception.  This is a medical condition in which a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another.  This usually happens to infants and young children, so for me to have this happen at 25, was a medical phenomena.  I am proud to say my surgeon was very accurate and managed to leave me with a straight scar...not some crooked ass keloid.  This was one of the worst experiences of my life and because of it, will refuse any future surgery suggestions.  If I’m not unconscious or dead, good luck cutting me open.

GRAPHIC VIDEOS...NOT FOR WEAK STOMACHS!!!! This is not me, just SIMILAR to what  they did to me.

THE WHOLE SURGERY: 
 http://www.youtube.com/watch?v=lLFhU5T1X58

THE UN-TELESCOPING OF THE INTESTINES: 

http://www.youtube.com/watch?v=Ex6axVN8TWM&feature=related

27 years old:  FIRST lung infection and heavy antibiotics for 30 days via a PICC.  This was a rude awakening. I really came face to face with having CF.  PICC lines are something CFers experience often, although I have had only 4, that's enough!  A 90 minute drip of antibiotics every 6 hours.

HOW A PICC IS INSERTED:
http://www.youtube.com/watch?v=Ne3FRpXTyy8

28 years old:  Lung infection treated with heavy antibiotics for 3 weeks via PICC.  Post a major relationship ending, I was a mess and failed miserably to take care of myself.

30 years old:  Ecoli!!  I think I died and came back to life.  After a month of abdominal pain, a urinary track infection followed by a bladder infection, they tell me I have an ecoli infection.  I’m down to 100lbs at this point, which is ridiculous.  I remember going to bed one night watching my favorite movie, The Princess Bride and a stuffed animal thinking it was my last night on earth.  I didn’t even call anyone to tell them.  When I woke up the next day, I thought I was dreaming.  I made some phone calls and decided it was time to take care of myself.  I reached out to my friend who directed me to the health food store and acupuncturist.  I was nursed back to health over the next 2 months. 

31 years old:  Back to the Dr. for a PICC.  This course of antibiotics was the most intense and my body suffered the most.  I got down to 99lbs, could barely walk up a flight of stairs, had an overgrowth of yeast inside my body and on my skin.  It took 6 months to recover.  My skin has never been the same nor has my lungs.  I definitely feel weaker and more susceptible to infection since then.

33 years old:  Overgrowth of bacteria in lungs requiring heavy antibiotics for 3 weeks via PICC.  This was the worst of any PICC I’ve had.  The PICC nurses swear they know everything, as do phlebotomists, but my veins aren’t what they seem.  The nurse struck a nerve and sent lightening bolts through my body.  I wanted to strangle that woman.  They tried to insert the PICC again under x-ray so they could SEE the veins, and again, NO SUCH LUCK.  What happen to my first PICC nurse?  She did it so smooth in one try.  I ended up having the PICC inserted and 3 days later my vein collapsed.  I refused another try so they used a peripheral IV.  WAAACK SAUCE!  A PICC is so you don’t have to be stuck many times….so much for the idea.  I was a pincushion for the next 3 weeks.  BOOTSIE!

As for now….I’m definitely going through some lung issues.  Watch out for enormous mucus balls flying out the window of the car.  My Dr. isn't so sure I should be getting PICC lines considering my lungs are in good condition.  If I do need treatment, lets vote for oral antibiotics!

Let Me Introduce Myself

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I was conceived in Louisiana, born in San Francisco, and raised in San Jose, California.  I was adopted at 3 weeks of age into the Davis “Clan, “ as we call it.  That is my mother, father (celebrating 42 years of marriage!!) and older brother along with my extended family.  This is my family.  The only one I have.  Blessed by them from the day we met.

I am Creole, have never met my birth parents, but have done some research to find this story:  My birthmother and birthfather grew up together.  He was 24, married with 3 children and she was 17 when I was conceived.  Due to her catholic upbringing, having children out of wedlock was forbidden so she went to San Francisco to be with her grandmother and finish school.  After I was born, her grandmother encouraged her to name me and she decided on Patricia.  She returned to Louisiana shortly after my birth. 

Yes, it would be nice to meet the people who created me, see where I get my looks from and learn about my heritage, but it is not a priority at this point.  Having cystic Fibrosis, which is genetic, is really what keeps me curious.  By law, the adoption agency was to notify my birthmother that I was diagnosed with Cystic Fibrosis, but my visit to that place didn’t really give me the vibe that they follow the rules.   At the end of the day, I’m 33.  It’s not like she forgot she gave birth.  Maybe she blacked it out of her memory.  

My mother, in her early nursing years, diagnosed me with CF at 3 months.  She and my father encouraged the Dr.’s to give me the sweat test for 9 months, saying I tasted like a potato chip when they kissed me.  What do ya know?  Mom knows best.  Diagnosed with out a doubt with a 98-sweat test (60 is the FOR SURE mark).  Immediately thrown into an array of medications and treatments, my parents had their hands full.  STILL DO!  The Dr.’s said I would live to be 12 but that didn’t discourage my parents or me from living life to the fullest.

In short, I’ve been on a roller coaster of ups and downs but I wouldn’t change it for the world.  I’ve seen and done things others dream about, I’ve outlived my life expectancy by 21 years and counting and I continue to keep it moving despite the world’s challenges.

keep it real.