Monday, September 12, 2011

View On Doctors Part 2

I hope everyone had a nice weekend. While most of the country spent the weekend in reflection, for me it was time to move. Now all my stuff is in the new house (still in boxes) and my mother and I have the joy of unpacking.

Over the weekend I received a comment on my post "My View On Doctors" that I felt needed a new post to give an appropriate response.

It was mentioned by someone (I'm sure there are more people who feel this way) that they are hesitant to question the transplant doctors for fear of not being listed do to "non-compliance". It is intimidating dealing with a doctor (or team) who ultimately make the decision on whether you get to live or die. That was my fear when I first met my transplant team. I know I can be argumentive, opinionated, and just plain stubborn. I didn't want them telling me that I wasn't a good candidate for a transplant just because we can't agree on how my health should be handled.

If you've read my posts about that initial visit, you know that it did not go well. I tried being nice and "compliant". I wound up in the ER (severe allergic reaction coupled with severe dehydration due to the tests). I had notified them that I had a contrast allergy and that I dehydrate quickly. The doctors said that there was nothing to worry about. That arrangements had been made to keep me from reacting. When I was told what precautions were being taken, I felt that it wasn't enough, but didn't say anything because I didn't want to be non-compliant. That was a big mistake. I was rushed to the ER, they thought I was going to start coding. I was in the hospital for a week before I was stable enough to go home.

So when I encourage you to take the reigns when it comes to your healthcare, I'm encouraging a proactive role in your healthcare. Research your disease, meds, nutrition, exercise and any other treatments. Prepare yourself for a conversation with your doctor. I'm not telling you to undermine your doctor. I'm not telling you to be rude and call him all kinds of profane names. They do deserve respect. But if you feel uncomfortable about something please speak up. You are a key part of your health care team, you know your body better than anyone else.

Thursday, September 8, 2011

My View On Doctors

I find the doctor-patient relationship quite funny. Patients hate going to the doctor's office, and some are afraid to disclose all information for fear of judgement. It took me 20 years to find a doctor I can work with.

As a CFer I deal with doctors way more than I would ever want to. Over the past 30 years I have developed my own theories on doctors and how to deal with them.

Doctors are not God nor are they one step down from him. Some may think that they are, but they aren't so don't let them make you think otherwise. They are human. Intelligent humans who went to school far longer than most people would want to.

They went to school so that they can give you the best possible advice. That's what a doctor basically is. He's an adviser. You come in and list out your symptoms and the doctor gives you advice on what to do about it. You can follow his advice, seek a second opinion, or ignore it. You are not required to do whatever the doctor advises you to do.

You don't have to listen to him speak that medical speech that might as well be Greek with how much meaning it posses to you. You can and should stop the doctor, make him speak in a manner that you understand, and do not let him leave until you fully understand what he is saying. You don't nod your head, pretending to understand what he says.

Make sure you know the side effects of any procedure or medication the doctor prescribes. Keep in mind you also can refuse any medication or procedure. They can't force you to take or do anything. Your doctor is supposed to give you the best possible advice so you can make an informed decision. He knows the decision is ultimately yours. He can't bully you into anything, so don't let him.

When at the doctor's office make sure to voice any and all concerns. Don't pay attention to him acting like your wasting he's precious time. Doctor's are paid to be there. They are paid to listen to you. And a concern that may seem trivial, can be a symptom of something far worse. Doctors rely on the combination of several clues (symptoms) to make a proper diagnosis. If you withhold a clue, he may give the wrong diagnosis. The wrong diagnosis does no good for you.

This what I have learned through the years. When it comes to doctors you have to have a backbone. Sometimes you have to be a little rude. I've had doctors tell me that I'm not that sick, I usually tell them that they obviously didn't graduate top of their class. I have doctors threatening certain actions if I don't do what they want and I threaten legal action. I have brought in photos of strange rashes just so the doctor would know what I was talking about.

Now, when I visit my current doctor I bring a notebook with a list of concerns and questions. I don't leave till each one is covered. I also request copies of PFTs so I can compare them myself. I research medications so I'm aware of what side effects are cause for concern.

I listen to my doctor and take his advise to consideration. I don't always follow his advice (he knows it). This post isn't a bash on doctors or to put all doctors down. I like the doctor I have. He treats me as an equal and encourages me to make my own decisions regarding my healthcare. Unfortunately, not all doctors are like him. I've dealt with several attendings at the hospital who make me want to pull my hair out. And the doctors at the transplant center, while they are among the best they act like they are gods and I should obey their every command.

So remember, it's okay to stand up for yourself. You have the right to be spoken to not at. Your concerns are valid. No matter who the doctor think he is, he is only as good as the current advancement of science in his field.

Wednesday, September 7, 2011


Shortness of Breath.

The first time I saw that on my medical chart, I thought, What the heck? Why would they put SOB as reason for hospitalization. I know I'm an annoying patient, but man that's kind of a rude diagnosis. Later I was informed what it meant.

So yesterday, I called my doctor's office complaining of shortness of breath. I've been feeling pretty good all summer and suddenly I'm having a hard time walking without gasping for air. I don't know if it's the heat or if the darn buggers in my lungs decided it was time to fight back again.

After waiting at home for most of the day, I got a call back from the doctor's office telling me to start taking Batrim and call on Thursday. I keep Bactrim on hand for emergencies but I am not a fan of it. It dries secretions making it harder for me to get stuff out and I wind up feeling tight chested all day. Not to mention my sinuses feel all stuffed up when I take Bactrim.

I will be calling the doctor tomorrow and letting him know that I am still gasping and now all tight chested. I don't want another trip to the hospital and am hoping there's something I can do at home, if we catch an infection early enough.

Not too happy about how I'm feeling. Supposed to start moving on Saturday and need to feel at my best. Moving is not a fun ordeal when you're healthy so feeling below par is going to make it a challenge.

On a good note my grandmother and I are on our second blackberry pie from this season's blackberries. Blackberries grow like crazy at the family ranch. We're hoping to make jam out of the rest. If we make jam, that should get us through the winter. The crazy weather has made the other crops produce very little this year. So we are going to have to stretch what we have.

I'm going to go dig into a pie.

Thursday, September 1, 2011

September Update

September's here. I wish I could say that means the weather will start to cool down. But in this part of California it doesn't cool down till after Halloween. Then we jump from hot to freezing cold. There's no fall weather. We only get a week of spring. I guess that's the downside of where I live. It's either really hot or really cold no easing into the next season.

As of right now I basically have two more months of summer weather left.

Hoping for a low key September. I have no appointments scheduled for the month and am working hard at staying healthy. My niece has a birthday coming up so we'll be celebrating. She wants a purple cake and Snow White. Of course at her age, she'll have a new favorite by the end of the week.

I am supposed to move in the middle of the month. See how that goes. Something always ends up lost or broken. But I'll be moving from three acres to 20 acres. There's lots of trees and a creek. And the property is right next to the family ranch. Can't complain about the location. I just hate all the packing and unpacking. Medical supplies always seem to take up way too many boxes.

I am going to miss the snow. The new house is below the snow line, so no winter wonderland for me. Here you get plenty of snow to play in, but not enough to be annoying. I'm going to miss it. And I will miss the smell of pine trees in the morning. Pines grow like crazy here. It's beautiful looking out the window and seeing pines all the way up the mountains. Oak grows at the new place, not pines. Oak just doesn't have that same piney smell.

I think the most annoying part about moving is having to update my address. I have to contact the three pharmacies that deliver to me, my CF clinic, the transplant clinic, Social Security, IHSS, and my insurance. That's on top of having regular mail switched over. It's crazy and a headache. It took me a year of calling before Social Security finally updated my record. I'm going to hate going through this again.