Medications...Today vs 3 Years Ago

First order of business is check out this post by fellow bloggy Cystic Gal.  She talks about our mutual influence in a semi-recent online study of influential CF bloggers :)  Yay to us!

This study, conducted by the makers of TOBI, is pretty nifty.  The data was taken in 2009 when I was still a fairly new blogger.  My stats have changed since then.  And the fact that I now have Twitter too.

But check it out yourself:
2011 CLIO Awards

This award/research thingy got my mind thinking last night.  Coupled with my lack of health insurance (see previous post about that one), I had much to ponder as I tried to fall asleep last night.

What did I ponder about?  Medications.  Or in my case lack of medications.  In reality I don't take that many CF medications.  Most of the daily pills in my sorter are vitamins and supplements.  For example....I take Women's One A Day multi vitamin, Calcium, Vitamin C, Vitamin D, Vitamin E, Motrin, stool softener, and melatonin.  The medications I take are Singulair, Prevacid and Azithromycin in pill form at least.  Once I stopped the anti-depressant and the hormones I have nothing!  There is Creon 24 with meals, DuoNeb 2-3 times a day, Pulmozyme once a day, 3% 1-2 times a day and Symbicort.

Gone are the days where I was taking medication after medication.  No longer do I take oral antibiotics (2-3 at a time) or inhaled antibiotics (off month I added Cipro oral).  My routine seems so slim compared to so many others.  I can do my morning and night treatments in an hour each because I don't have to use all that extra stuff.  Sounds great huh?  But the reasoning sucks.  My lung bugs don't respond to the orals like they used to, and my lungs themselves don't like anything being inhaled into them besides the ones I do already (the exception might be Symbicort.  I have noticed some tightness when I do it vs when I don't).

Its so weird to me, to read about 3 hour treatment schedules for other CFers when I barely do that in a day.  But I have been there. I have done the 2 hour treatment, the 1 hour rushed treatment and the finish in the car treatment.  I feel like the backwards patient.  The one whose regimen gets easier as she gets sicker.

So. Freaking. Weird.

Fabulous Article About 3 Amazing Cysters

The Fight of Their Lives

Check out that wonderful article.  Its about 3 amazing Cysters and their lives with CF.

When you are done with that, check out Piper's Blog!  She is featured in the article.

Letting Go - an article to read

Letting Go

This is a response I wrote on a thread on CF2Chat.  Please read the article and respond.

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end."

Is my favorite quote from the article.  And I can not agree more with it.  You may be deemed a hero for standing up and battling till the last breath, but what is it for?  Especially if deep down inside you knew you would be battling till the death.  Wouldn't you want to enjoy those last deaths?

I have 2 examples I am going to draw from.  One is my step-mom who passed away in July and the other is my pop-pop who passed away 4 years ago next month.  They are opposite stories with Cancer as the leading player.

My Step mom was diagnosed with breast cancer 6 years ago.  They treated it for a year and it went into remission.  A year or two later it returned.  Again they treated it and it went into remission.  Two years ago she was again diagnosed with breast cancer but also in her lymph nodes.  She decided to treat it aggressively again and hoped it would go into remission.  It didn't.  It spread to her bone marrow.  She was on hardcore chemo, trying the IVs, testing the chemo pills.  Anything she could to stop it.  She was still working and exhausted.  When she got home from work she fell asleep and slept till morning. She had stopped living.  But she still went on.  Eventually she decided to stop work and concentrate on beating the cancer.  She continued chemo and radiation, whatever would "help", only to have it spread to her brain this past summer.  At that point it was obvious to most of us that she would not beat the cancer.  For it to spread while getting racked with major treatments, meant it was a doozy of a disease.  But still she fought on with the chemo.  The middle of June she was admitted to the hospital after calling 911 because she couldn't stand up to get out of her car and she was alone.  She never left the hospital.  3 weeks later, as she was laying there totally unconscious, my dad made the choice to stop treatments and let her die peacefully.  I still remember the phone call.  He was devastated but could not watch her suffer anymore.  The following day she passed.

Her last year was horrible.  She slept almost 20 hours a day and had no energy.  She was not the same woman he had married.  She had died already, but her body was still alive, being kept that way with the chemo and drugs.  I do not blame her for her choice to fight.  Personally I would not have tried for so long, but then again I have been facing my mortality from age 5.  She wanted to see her grand children grow up and to live longer, she was only 65.  But at some point don't you have to ask yourself quality over quantity?

Then there is my pop-pop.  My mom-mom had died about 1.5 years before he was diagnosed with lung cancer.  Now this was a man who had a stroke at 35, a massive one, recovered and was NEVER sick another day until he got cancer.  We were upset, especially when he told us he was denying treatment, much like my mom-mom had (she lived 5 days after finding out she had brain, lung, liver, kidney, and bone? cancer).  But we respected his choice.  It was his life.  What we were not prepared for was learning how bad the cancer was.  He had told us it was OK, it wasn't bad.  But as he progressed he made my mom and aunt legally allowed to talk to the doctor.  He told them it was stage 5 and he wouldn't not live much longer.  So we went from thinking he had months and months and months to live, to maybe having only one month.  He had kept it from us so we wouldn't try to pressure him to get chemo etc.  We found out in March about the cancer, and in July or August how bad it really was.  The beginning of October he got really sick and my mom and aunt could not take care of him.  They had moved in and taken leave of absences from work to take care of him full time.  We had him put in a nursing home for a few days so they could fight the infection that had taken over.  I remember visiting him on my way to my birthday dinner.  I told him I loved him.  It was the last time I would see him awake.  He came home a few days later and hospice was sent out.  They were wonderful.  He had stopped eating and drinking and we knew it was a matter of days.  October 20th I went to the movies for the release of the movie Flicka with a friend of mine.  I was planning on getting up early the next morning to go see him again.  But an hour after I got home my mom called and told me he had passed away.  I rushed over to see him and say goodbye.

My pop-pop lived 6 months with no treatment.  Though he may not have been in excellent health (duh) and declined rapidly towards the end, he was able to spend time with his new great grandson, his kids and his grandkids.  My nephew remembers him, through pictures, as a fun happy peaceful man.  Not a sick man.  I still remember my pop-pop sitting in the chair in the driveway on mother's day while my nephew ran around him and slapped him high-five every time he got to him.  I've never seen my pop-pop so happy.  I know moments like that went through his head in his last few hours.  The point is he enjoyed his last moments on earth and did not try to fight them.  He knew cancer would kill him and he had accepted it.  And once we knew his decision we accepted it as well.

I think that any disease can be fought, but, like General Lee, you need to know when to surrender.  You need to know when you are tired of trying and want to just live in anyway you can.  Even if it means stopping treatments, especially if it means you stop treatments.

Health Care Reform

I figured it was time that I took a stance on the big heath care reform issue. Yes I voted for Obama. I am a Democrat, and he was the lesser of the two evils running. I was not overly thrilled with him, but I prefer him over McCain. I do like Obama. I think we need someone young with a fresh outlook running our country and trying to get it back on track. He has not been in office a year yet and people are disappointed in him. Rome was not built in a day my friends. These things take time.

Obama's Speech

Follow that link for the full speech he gave to Congress on the 9^th.

Much of what he said I agree with. The problem is making it happen. He has many great ideas, ideas that could possibly turn our country around. But with the government’s system of checks and balances, it will be a hard road to get those policies into law.

I’m a middle class citizen who receives my health care through my employer. I pay $110 a month and have decent coverage. My co-pays are high, but not as high as some. I also pay for the higher/better insurance that my office offers. I pay as much as $50 per drug per month. On average my co-pays are about $300-400 a month. That’s a car payment, on top of my car insurance, rent, jeep payment, cell phone, gas, food and student loans. I work my ASS off so that I do not have to rely on the system, yet I can’t afford the insurance that I have. And come December, everything will go up again. It’s out of control. It’s also at a point where it might be cheaper to not work and go on welfare. When a person who WANTS to work, is forced to not work because it is “easier” to be jobless so they can afford their medicines, you know there is a problem.

THAT is what I want to see addressed in the health care reform. I want to see middle class, hardworking citizens be able to pay for health care AND be able to pay for the medications they need to take. I have no issues paying for my own coverage, I have no issues paying co-pays, but when I can get the EXACT same drug at a pharmacy without insurance and pay only $4, but pay $30 with insurance, then I want something to change. Don’t believe me? Target has my Bactrim DS tabs on the generic list for $4, if you have no insurance. I pay $30 at Rite Aid with my insurance co-pay for generic Bactrim DS. They are IDENTICAL. So why can Target do this, yet the insurance company is making me pay 6 times as much?

Another example…I need oxygen when I work out. I am lucky enough to have a treadmill at home so I can use my concentrator when I exercise. I called my insurance company a couple of weeks ago to find out how I could get a portable concentrator so that I could travel and also run outside while using it. They told me that I would have to pay half of the cost if I could find a DME (durable medical equipment) retailer that would do a lease to own option. My price…$2500 give or take. I would have to pay that much out of pocket! Where am I to get this money?

I agree with Obama’s plan. It has what I feel would help the country and if it can lower costs and ensure that everyone will have coverage than good. That’s what we need.

I know many people are hell bent against the plan and everyone is entitled to their own opinions. But step in my shoes, or the shoes of someone with a terminal illness and tell me how it feels to HAVE to work to get coverage because you are not able to get insurance on your own. Or if you do, the insurance company doesn’t have to cover the pre-existing condition.

For those of you who are against the reform. WHY? Because you don’t’ won’t to loose your current coverage? You won’t. Because you don’t want to pay for other people’s insurance? You do that NOW! We are already paying ridiculous costs for Medicare and Medicaid because the price of healthcare climbs each year. Under this plan, costs will be capped and the system will be treated much more like a business and not a monopoly. Right now, prices can be set basically anywhere since there is no where else we can go to get health coverage. This will change. The government will offer a lower cost health plan that will allow people to be able to purchase their own, if they can. And it will build competition to the big name companies now, driving prices down. How is that a bad thing?

Another issue I know many people are not happy with when it comes to the reform is requiring everyone to have some type of coverage. Yes this may seem harsh and what not but think about it. When an individual goes to the ER, who does not have health coverage, and gets treated, who do you think pays for them? We do. Through taxes. If everyone is required by law to have coverage then this will bring the costs to us down. There will always be those who slip through the cracks, the country is too large for that, but if the majority of people get coverage then we can essentially stop paying for them. It will be like auto insurance. You are required to have coverage if you own a car. Many don’t and we pay for them through higher premiums. If you get caught driving without insurance you pay fines etc. I don’t see anything wrong with that. Same goes when applied to health care.

Everyone SHOULD have insurance. You never know when something bad will happen. You can wake up tomorrow with a rain tumor and if you don’t have insurance then how are you getting treated? Don’t you want options? Don’t you want to be able to chose who you see and where you get treated?

If Obama’s plan is passed and goes the way it should (or even with some modifications) our country will be much better. We are one of the richest countries in the world yet millions and millions of us can not afford health care. A basic right. Life, Liberty and the Pursuit of happiness. LIFE people, LIFE. Without healthcare I can’t have life, I’ll be dead. Whether or not you agree with me, or the reform bill, you have to agree that something needs to be done about it.

Legislation passed for Newborn Screening of CF!

Newborn screening legislation was passed in all 50 states!!!!! Screening for CF that is :)

How awesome!!!

Here is the full article.

Thanks Katey for posting this on your blog :)

My colon cancer screening visit

I am a few days late on blogging this but I wanted to make it very informative for you all. I had my genetic counseling on Tuesday to find out about the colon cancer gene in my family. Luckily my Aunt was tested for the gene and it was found so they know what to look for. Because of this I should have my results back in 3-4 weeks instead of 5-6. You can see this post for my family history of colon cancer.

The gene itself is actually called HNPCC or Hereditary Nonpolyposis Colorectal Cancer. All my information will be from the print out I received at my visit which is here. It affects primarily the colon and anus but can also cause cancer in the uterus, ovaries, stomach, urinary tract, small bowel and bile ducts. Basically the GI portion of your body and it is also called Lynch syndrome or cancer family syndrome. In my family, like I have stated before, it affects mainly the colon, which the genetic counselor said is VERY rare. They usually see an array of cancers of the GI areas in families with the gene. I told her we are a special family.

There are 4 known mutations of the gene. They are hMSH2, hMLH1 (which is the one my family has), hPMSI and hPMS2. Since the gene is a dominant gene it does not require 2 genes to be passed on to offspring, as is the case with CF. So obviously my dad has the gene (given he had cancer at the youngest age out of his 8 siblings) and there is a 50% chance that he passed it on to my brother and I. If my brother has the gene, he has a 50% chance of passing it on to James and the new baby. My brother has no desire to get tested as of yet, and refuses to get colonoscopies. Consequently, I am hoping I have the gene so that he will get tested (the genetics team thinks I’m crazy LOL).

A lot of what they told me did not bother me at all. I am used to hearing “bad” things from having CF. They acknowledged that too and said that I was very calm and didn’t seem phased by anything. But really I have known about the possibility of colon cancer my whole life so I have been able to deal with it. It’s not like I just had a colonoscopy and was told I have cancer. I am just getting tested to see if I need said colonoscopies. They offer counseling and support groups for those with the gene and also for those who are waiting for the results. I am not anxious at all, and will most likely forget about it until my CF dr appointment in 2 weeks and then again until I get the phone call with the results. I am lucky enough that they offered to just call me with the results instead of making me come down for another appointment. I just had to give my consent which I was more than willing to do.

This quote from the print out will help calm anyone out there that is thinking OMG my great grand daddy had colon cancer and that was it in my family! “Persons at risk for HNPCC usually have a family history of two successive generations of colon cancer or at least once generation with cancer and one with polyps”. So if only one person in your family has had colon cancer and no one had has polyps, chances are slim you have the gene. NOT saying you DON’T, just saying chances are slim. And remember I am NOT a genetics counselor nor am I a doctor!

It was mentioned that when females are found to have the gene, they think about having hysterectomies to remove the risk. They said only with females in menopause and that have had children. I asked about the possibility of having mine removed if I have the gene since I will definitely not be having babies and they told me we would talk about it after the results come in. If I do have the gene they will schedule a colonoscopy and upper GI scan to see if I have any polyps.

That was it and I am glad I finally had it done. I am going to talk to my brother more about him getting the testing since it is a lot easier than a colonoscopy. If he doesn’t have the gene then he doesn’t need to be poked and prodded in the buttocks region. But if he does, it will be good to know for James’ benefit and the new baby’s.

ABX resistance Article

Thanks to a friend on CF2chat for posting this link!

All about sponges and how they secrete a secret weapon that could make antibiotics effective again after they become useless with some bacteria!

Woot!!

Ok my dam hyperlink button won't work! I will try to edit it later. Sorry folks!!!

Just copy and paste this link into your browser.

http://www.sciencenews.org/view/generic/id/40894/title/Spongeâ??s_secret_weapon_restores_antibioticsâ??_power

Courier Times Article

While some of the info is not 100% accurate, they did good.  It's fun seeing articles about CFers near me :)

CF article

Stupidity at its best...or worst!

By now I am sure most of you have heard about this. Personally I am not offended. I find it amusing. Yes it annoys me that there are people out there STUPID enough to make comments without getting the full facts. But I am trying to look at the positives...we are getting publicity!!!! Yes it is weird, strange, not normal publicity, but hey now people are out there looking up what CF actually is! NOT a disease that affects white males, as the CUSA claims, but a disease that affects caucasions of BOTH sexes.

If you are interested in reading the articles here are a few:

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20081125/carleton_fundraiser_081125/20081125?hub=CTVNewsAt11

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home?cid=al_gam_mostview

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home?cid=al_gam_mostview

Good articles to read

http://www.xconomy.com/san-diego/2008/11/24/sequenom-may-spot-single-gene-birth-defects-like-cystic-fibrosis-in-a-sample-of-mothers-blood/

http://www.walesonline.co.uk/news/cardiff-news/2008/11/24/pupils-use-creative-skills-to-express-their-vision-of-future-91466-22322622/

http://news.bbc.co.uk/1/hi/health/7742873.stm

Article about ME

A friend of mine on CF.com keeps a blog about CF. She is a professional writer and her blog is dedicated to educating to population about CF. Back in May she wrote an article featuring me :)

Check it out...

http://understandingcysticfibrosis.blogspot.com/2008/05/career-spotlight-architectural-designer.html

She is an amazing writer and person!