Where's the Energizer Bunny When You Need Him

This week we have Thanksgiving to look forward to. As I am writing this, I'm looking forward to the Thanksgiving Feed my Bible study is having Tuesday. Pretty excited since it means I get an extra day of eating.

My doctor appointment went fairly well. My weight is slowly creeping up. No change in lung function, but using the oxygen while I exercise seems to help me with the gaspiness (They call it shortness of breath or SOB). The doctor says the exercise will help keep my heart and muscles strong. So that seems to be the goal. Try to keep everything else in working condition while my lungs go down the drain.

He did say that some CFers last quite awhile where I'm at now. I told him it wasn't a problem of "lasting". It's has to do with my quality of life. I'm very adaptive, so while I can't run or swim, I keep my mind busy and I'm okay. But what happens when I can't keep my mind occupied? And besides, it's pretty depressing sitting around and watching everyone else doing all the things you used to enjoy. I did say that if I hit a point where I can no longer eat, I'm calling it quits. Food is more than nurishment to me. It's an experience. And taking that away would make me completely miserable.

On a happier note, my niece visited this weekend. Since it was way too cold outside (cold air gives me severe coughing spells), we stayed in and had a picnic on the living room floor. She really seemed to enjoy it. Then we put on aprons (my grandmother made my mother and me these cute aprons out of Hawiian style fabric). I took pictures of my niece wearing my mom's apron. It was too cute. Then we baked chocolate chocolate chip cookies. She had fun with all the mixing. The hard part was not letting her eat the raw cookie dough. Children don't understand why they can't just lick the bowl. Besides the health reasons, I didn't want her having a sugar high with no outlet for the energy. The cookies turned out great. My mom took my niece to deliver the cookies to nearby relatives. She was pretty thrilled.

When they returned my niece donned on the apron again and helped my mom make dinner. She enjoys putting all the spices in.

After my niece had returned home, I was pretty worn out. I don't have much energy to begin with and she seems to take all I have. I love having her over though. It's just that with kids this age, you have to change up activities every 15 minutes or they get bored and start getting into trouble. Fifteen minutes is about the max for their attention spans. I have learned to divide big tasks into several little tasks and with that I can keep her busy longer.

I do envy her energy. I miss the days where I could just go, go, go. I miss singing without getting light headed.

For transplant related posts please go here

November Update

I know it's been a while since my last post. Things have been chaotic. Lost a family member at the beginning of October. His memorial was at the end of October. We are now trying to get back to our lives. The world doesn't stop just because you lose someone, but how do you pick back up? You can't pretend that person never existed. And you can't curl up into a ball letting the world pass you by. I would think that the best way to honour a loved one is to live the best life possible that you can.

I have been using the oxygen for about a month now. I get to do a lot more activities. So that's good. I miss swimming though. Since my sats only go down when I'm active, that's the only time I have to use the oxygen. I don't need it for sitting at home. I see the doctor on Monday to tell him how I've been doing with the oxygen. I also have to talk to him about my shakes. I've been slowly putting on weight which is great, but I received a letter from my insurance saying that they weren't going to pay for my shakes anymore. I can't afford the shakes on my own and I can't afford to be losing weight. So I need to know what to do next. Insurances never make things easy on you.


I had an appointment at the transplant center. It was short. I had let the social worker know about my stepdad's passing. She was surprised I had shown up to my appointment. I explained that in my experience when a doctor cancels on you, you get a new appointment within a week. But when you cancel on a doctor, you're lucky to get an appointment within two months. There was no way I was going to cancel. She seemed to understand. She notified the rest of the team about what had happened. That's the nicest those doctors have ever been to me. It even shocked my mom.

Halloween marked my Holiday Kick Off. For me, it means pouring through cookbooks and drooling over various recipes. I love food and I love preparing it. The idea of experimenting with a new dish makes me excited. I look forward to sharing my experiments with family and friends. Luckily, they seem to enjoy being my guinea pigs.

As far as the holidays go, I am getting booked. My dad is visiting the first week of December. I'm excited. Trying to find things to do that week. And I get to see my cousins. My Bible study group is having a Thanksgiving dinner this month and next month we have our Christmas party. These two months will be bittersweet since I'll be bumped to next next Bible study group at the first of the year (I'm getting too old for this one :o) It also means I'll be handing over the reigns to movie night to someone else. Not sure who yet. But I am looking forward to the next two months. I'm hoping to end the year with a bang.

For transplant related post please click here.

October Update

September was pretty eventful. I wound up in the hospital due to severe dehydration. The attending their completely irritated me. He would not listen. He kept ordering lab draws to the point that I had bruises and my veins were going on strike. I kept trying to tell him to lay off and he wouldn't. I was so happy to finally be going home.

At home I wound up with a severe allergic reaction. So I was on Benadryl for a week. So I was pretty useless during that time.

When I finished home IVs I went to my follow up appointment. My lung function had actually gone down. I needed a break from IVs so I didn't go back on meds. I did gain all the weight back that I had lost while sick. The doctor did a walking test on me. I've been complaining for awhile that when I walk around or try to work out, my heart rate keeps going crazy and my brain starts to scream at me. But I kept getting told that I was having an anxiety attack. I couldn't understand why a simple walk would cause an attack so I just kept pushing myself.

So my doctor ordered a walking test. Instead of testing my sats after I walk (which is how the walking tests at the transplant center are conducted) my doctor ordered that my sats should be checked while I am walking. Well, while walking I dropped to 85%. When I stopped and sat down my sats shot back up. So now when I workout or exercise, I have to use oxygen. It's going to take some getting used to.

My doctor also took the anxiety I feel when I get labs done into consideration. Since I already do relaxation techniques and am still having issues my doctor ordered some anti-anxiety medication. I'm supposed to use it only for labs. We're hoping that it'll relax me enough so that my veins won't constrict. We'll see how it works the next time I have labs.

The following day, I had to take my dog to the vet. He managed to get a fox tail deep into his paw. The vet had to sedate him and really go in deep to remove it. She let me stay in the room for the whole procedure. My dog is back to normal now. He's already trying to chase the sheep again. I don't think he got the memo on how to be a Lhasa Apso.

During all this, I was moving to a new house. So the stress with being sick was combined with the stress of moving. We still don't have everything unpacked.

I also was able to talk to COTA about keeping my blog open. We came to an agreement. I get to keep my Fight to Inhale blog going and use their site for all transplant related blogging.

As you can see it's been a pretty hectic month.

For transplant related posts please click here

Somber

A lot has happened since my last post. I was planning on providing a lengthy post today. That post is still in the works.

Today is a somber day. Last night my stepfather passed. My mother found him when she got off work. The coroner told us it looks like he had a massive heart attack. Everyone is trying to cope with the news. My mother is taking it very hard. No one should find their loved ones like that.

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.

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.

SOB

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.