Wednesday, October 28, 2009

Greed Knows No Country

I have found that instead of searching the internet for new information on Cystic Fibrosis, using Google Alerts really simplifies the process. It brings all the latest news straight to my inbox and I can sift through all the articles there. It's a great setup. At the end of the day I just log in and read up on anything interesting. So Monday evening I sat down to go through all the links that Google Alerts had sent and one caught my eye. It was titled "Cruel mother and 'Britain's sickest child." So I opened up the link which I have listed for you.

This article just irked me. I mean this mother scammed people into believing her child was sick and got them to give her money and gifts to "help him out." Her child spent countless time in the hospital when he could have been outside enjoying being a kid. I want to ask "what kind of person would do this?" but unfortunately I already know the answer.

It's people who don't care about how their actions affect others. It's people who would rather get easy money than put in a hard day's work for a wage. It's people who are greedy and can never seem to get enough of anything in life.

While this occured in Britain, the US has its share of scammers. These people fraud state Medicaid, Social Security, Disability, and agencies designed to help those who are truly in need. These people manage to scam tens if not hundreds of thousands of dollars from these agencies. And what's frustrating is that most do manage to get away with it. Those who are caught don't get punished enough by my book.

And because of these scammers, those of us who really do need the help have to practically perform a circus act to get accepted into these programs. We have paperwork to fill out. We have to submit paperwork filled out by our doctors. Then we have to see an outside doctor and submit that paperwork just to prove that we really are sick. Crap I spend so much time trying to pretend to the world that I'm healthy and now I'm expected to prove that I'm sick? It gets frustrating.

And after all the hurdles have been jumped over or hopped through, then comes the waiting period. It can take up to six months before your case is approved or denied.

This entire circus act is just so we can get the help that we actually need. And you have people out there pretending to be sick because they think they can get an easy buck. Guess I've been pretending the wrong way this whole time.

Sunday, October 25, 2009


I finally finished my last dose of IV meds yesterday.  I was so happy.  Once the medicine was done, I took out my needle and hopped in the shower.  Then I went up to my family's ranch to celebrate.

Basically, doing home IVs is exhausting.  I have to set up and hang the meds every eight hours.  I usually set alarms on my phone for each time so that I don't lose track.  If I want, a home health nurse can be sent out. But that's usually only for an hour a couple of times a week.  A nurse that's stays and does all the meds would be a private nurse and I'd have to pay out of pocket for that.  Not something I can afford.

Staying home and doing my meds on my own allows me to get more sleep than I would in the hospital.  In the hospital, I get awaken every 4 hours for vitals, treatments, lab draws, or because my blood pressure is low (which is normal for me).

Also, the food is so much better at home.  I never understood it.  I'm supposed to gain weight, but at the hospital they serve such disgusting food that you have to be starving before you eat it. And they never send stuff I can eat. I'm on a high fat/high calorie/high protein diet with no caffeine.  So they'll send coffee with breakfast, fruit for lunch, and grilled chicken for dinner. All with low fat milk.  I honestly don't think my chart is looked at as much as people claim it is.

So at home I get to chow down on Mexican food and Italian food (the two cuisines that rule).  I get all the whole milk I want.  And no coffee for breakfast. Makes my life a lot easier.

And at home, I get to spend time with my dog. When I'm doing my meds, he curls up and puts his head in my lap. When I take a nap, he sleeps right by my bed. If I start coughing he'll run over to make sure I'm okay. Basically, he's great for me. He doesn't ask for anything more than having his belly rubbed and a bone every once in a while.  But he'll cuddle with me, go for walks, comes running when I call.  I really should have gotten a dog before I dated all those flops :o)

Now I'm free. At least from the IV part anyways.  I still have three meds I'm taking in pill form.  Once causes me to see twirling lights and I'm not allowed to drive at night while taking it. Another makes me constantly hungry. I'll eat and eat till my stomach feels like it will pop and I'm still hungry.  It's quite annoying. The last one makes me thirsty. So I am hungry, thirsty, and seeing twirling lights all the time.  Kind of a funny mix.

Wednesday, October 14, 2009

Home Again

Well, I finally got to come home. Doctor says the tear in my lungs seems to have sealed up. I don't have that bubble wrap feeling under my skin anymore. And I can take more than five steps without gasping for air.

I am on a bunch of meds for now though. Taking an antifungal for a fungus infection in my lungs, taking prednisone to reduce inflammation caused by the fungus. Taking Bactrim for a staph infection also in my lungs. And taking an IV med (merripenem) for a bacterial infection that is also in my lungs. So I got hit really hard this time.

It's been stormy and rainy since I got home, so that means that I have to follow my doctor's orders to stay home and rest for three days. I think he planned this. He was actually considering letting me go last Friday but he said he knew that the moment I was released I was going to slow down. So he kept me an extra three days just to be safe.

My doctor is actually a pretty cool guy. He knows his patients habits and arranges our medications accordingly. He also explains everything and will even go into the science behind it. At the hospital, he'll come and check you out, let you know what your test results are, and if he's ordered more tests. All this while casually sitting in a chair like he's just visiting. And to top it off, he listens. He doesn't pretend to have all the answers. If I tell him a new symptom that baffles him he makes a point to get to the bottom of it. And he will tell you if he doesn't know. If more doctors were like him, patients would be way more satisfied with their care.

So my doctor sent me home with a bunch of meds and some tough stuff to consider. With CF you usually end up hitting a point where no matter how much work you do it's still not enough and that's when the word "transplant" is brought up. Unfortunately, I guess I'm at that point. I've been opperating at about 20% lung function for a year and this tear may be the first of many. I knew that at some point I would have to consider a transplant, but I had hoped I'd be closer to 40 before that. I also hoped that medicine would advance enough so that I could just grow a new set of lungs in a lab instead of waiting for a donor. But it looks like I might not get to.

I'm not debating whether or not to get one. I always knew that if the time came I would go for it. I mean if it's a success, I get to do things that I can only dream of right now. Shoot as soon as I get the okay, I'm going SCUBA diving. What's hard to swallow is the price tag and how much of your life you have to put on hold until then. In 2008 a lung transplant cost over $600,000. That includes doctor appointments, rehab, surgery, and anti-rejection drugs. That does not include room and board and transportation till you receive the okay to go back to your normal life.

For me the nearest lung transplant center is Stanford. So that would mean after the transplant, I would have to live near the center for at least four months. And because you only get a 4-6 hour window when an organ becomes available, I would have to figure out how to get there in a moments notice if I choose to stay in my hometown pre-transplant. So my life would literally be put on hold.

Another thing is that a transplant means no kids. I always figured that some day I'd meet the right guy and start a family. If I go through with the transplant, that nixes out having children. Anti-rejection drugs are too potent and dangerous for a child. I know that there's adoption or surrogacy, but so far every guy I've known has been dead set against those options.

Seriously, though. It's the cost that's holding me back. Insurance may pay a portion but not the whole thing. Which means I have to find a way to raise the rest, while trying to stay healthy enough for surgery, and finish school.

I also find this kind of ironic. For a while I had figured that once I was done with school and had a real job, I would start putting money aside to start a foundation. I wanted it to be able to provide funding to CF patients in need of transplants. Basically, the foundation would cover whatever the insurance didn't. I figured that with the stress of finances out of the way a person could focus on just the surgery. Because with CF, stress can make things worse. So if you're stressed out about paying for a transplant, staying healthy long enough for the transplant, and the transplant itself, it can really way you down. I had been working on this idea for a couple of years, I just never expected this to all happen.

Anyways, Life is full of adventures and it looks like I might be headed on another one. We'll see how this goes.

Tuesday, October 6, 2009

In Lock Up Once Again

Since my last post, I was found not to have the H1N1 virus. I was released on the 24 and was pretty happy to be going home. Just had some asthma issues but I figured that I could handle it. I spent three days at home feeling good and healthy. Was a little tired, but otherwise was feeling pretty good.

By Monday though I was having trouble breathing. I figured that I was just a little out of shape from the flu and it was nothing to worry about. By Friday, I was gasping for air when I would brush my teeth. I called and went in to see the doctor and ended up being sent back to the hospital. Turns out that I had managed to get a small tear in one of my lungs, causing air to leak out. This would explain the difficulty breathing and tight chestedness. X-rays didn't show wear the tear was located but they did show air bubbles in my neck. Can actually feel them when I press the sides of my neck. Kind of like pressing on bubble wrap. A little freaky.

So for the past few days I've been going through blood tests, ultrasound on my legs, X-rays... Just to make sure that I don't have any other problems going on. Good thing is I don't have any clots in my body, which I could have told the doctors that since I had none of the classic symptoms of clots (swelling in legs, pain...). My white blood cell count was pretty high though. When I had the flu it was only at 5 now it's at 20000. That means I'm trying to fight off some sort of infection. And I lost even more weight. So since the flu, I have lost over 10 pounds. It took me three months just to get to my goal weight. So this is a serious setback.

I'm back on IVs for now. The tear seems to be healing since I can walk short distances again without gasping for air. I can brush my teeth without feeling like I'm going to pass out. And the air in my neck is slowly going away. My oxygen levels are going up slowly (currently at 94%). And I have managed to gain back a pound. So I am improving. It's just a slow and frustrating process.

Unfortunately, with this hospitalization I have missed too much class to catch up. So I had to file a Planned Educational Leave Petition for the quarter. Means I won't be getting my degree till March 2010 now. Sort of a let down, but my health is more important. Going to have to find ways to keep my mind busy till I can go back to school in January. I only have two classes left, so I feel a little frustrated. My goal is so close, yet so far away at the same time.

This hospital stay had a stressful start. First I get sent here for not being able to breathe, and then I felt like I was dealing with nurses who just had no clue. I had a nurse try to access my port, turns out it was her first time and she missed. Twice. You have to realize, a port is an easy stick. Just have to get the needle in this rubber thing that is under my skin. Much easier than trying to find a vein. In the end they had to have an Action Nurse (someone who specializes in IVs) come up and access my port. She was a nurse I used to know in Peds. She did one stick and was done. Pretty simple.

The port issue wasn't the only stressful thing I dealt with. The hospitalist (doctor assigned by the hospital) kept treating me like a child and she wasn't telling me what was going on. And she kept changing my medications without even notifying me. She even ordered finger sticks before and after I ate. And she ordered heperin shots. I finally just had to start refusing things, just so she would contact my real doctor.

The whole time I was having a hard time breathing and I was thinking that this was stress I should not be having to deal with. Finally got to a point where my mother started staying the night with me so that my wishes would be respected.

Things have gotten better since my own doctor stepped. The finger sticks stopped, and he gives me answers. Even if it's a "we're still trying to find out what's wrong" at least he keeps me in the loop. He doesn't want me going home till I show more improvement. I guess he's making sure not to have a repeat of sending me home and me having to return a week later.

Throughout all this I am surprised that they don't have some sort of note in my chart saying that I'm a noncompliant patient. I had to lecture an instructor on the importance of asking a patient for permission to have a student do a procedure, before letting the student do it in the first place. I was pretty pissed at her and may have come across rudely. The doctor had ordered that I receive my flu shot and pneumonia vaccine. Not really a big deal, but for some reason it was decided to let a student give me the shots and I wasn't consulted. The student's shots really hurt and then the instructor was telling the student that she should be present for another procedure that I was going to have. All this right in front of me without asking if I was okay with it, so I told the instructor that she needs to ask the patient first. She looked a little shocked that I would say such a thing but at least she didn't try arguing with me.

Don't get me wrong, not everyone here is incompetent or unfeeling. I have nurses who are on top of their game. One even brought me information on a new drug that the hospitalist had decided to put me on without even consulting me. When I complained to the nurse, she brought me info on the drug to read, so I could make my own decision on it.

I figure this is a good time to give a little warning to my readers. Some of my articls will be planned out. But times like this, I will put the article I've been working on aside to give you a taste of what is going on right now. Given time, I might actually be able to include some photos so you can have a better view of what it is like.