Saturday, March 17, 2012

Patient vs Medical Professionals:Do Your Homework!

Many people place medical professionals on such high pedestals, that they forget to remember that medicals professionals are human beings, too. Yes, medical professionals are highly trained and schooled, and dedicate their lives to helping others, and we would be in a world of hurt without them, but we must not think of them as being perfect or flawless. They can, and do, make mistakes, forget important things and may even sometimes seem cold and uncaring. We should not judge them, and we should be certain to only associate with ones that we can relate to and personally trust, but that doesn't mean that we should not question or check-up on them.

Take my recent encounter for example; the renewal of my life saving drug; Dasatinib, also known as Sprycel. Sprycel is the drug that I take every day, which enables me to continue to live with chronic myelogenous leukemia, also known as CML. My doctor has made it perfectly clear to me that my chances of survival depend entirely upon me taking this medication, at the same time every day, without fail. He has made certain that I know the importance of consistency, (no skipping doses)so that the leukemia is less likely to mutate, and find its’ way around the drug, thus endangering my life.

Knowing this has caused me to be absolutely diligent when it comes to taking my medication, despite the way that it makes me feel. My consistency has resulted in a very rapid deduction of “bad” cells in my bone marrow; this is a very good thing. Since my health insurance does not cover prescriptions, and a one month prescription of Sprycel is over $15,000, I have been fortunate enough to have Bristol-Myers Squibb come to my rescue with their Destination Access Program. This program allows me to receive the Sprycel from them, at no charge. This is a program that must be approved on a yearly basis.

Since I was diagnosed with leukemia last February, I was placed on the program the last week of February, meaning that in order to continue receiving my medication without it being interrupted; I would have to be re-approved into the program by the end of February. Needless to say, I knew the importance of not having a lapse in medication, so I started this process as soon as I could; the first week of January.

Now allow me to preface this next paragraph by stating that this process really is; quite simple. It is a matter of faxing DestinationAccess a one page application, and my tax return. To be eligible for this program, you must not make more than $75,000 per year if you are single and $150,000 per year if you are married and your insurance must not cover prescriptions. In addition to this, your physician must send in a one page form that has your diagnosis on it; he must sign and date it. He must also send in a prescription with your dosage, and the quantity box checked; there are two choices, 30 and 60. This form must also be signed and dated; simple, right??

HaHaHaHa!!!! This is where the fun began. It has taken eight, yes, I said EIGHT weeks for this process to be completed. Today, with one pill to spare, I received my medication. The reason, in my opinion, is utterly and completely ridiculous; it seems as though my doctor has an assistant that handles this portion of his workload; a smart thing in my opinion, as this frees up his time, allowing him to see patients and to do what he does best. The problem with this is that his assistant was obviously unable to follow simple instructions. Because of her lack of either reading, or comprehension skills, I, along with Destination Access had to call, and email her, no less than seven times, in order for her to properly deliver the two, completed forms, in order for me to receive my medication. Because these are medical forms regarding a very potent and expensive medication, they must be accurately filled out; no exceptions.

I have never seen so many different ways to screw up two forms; everything from not checking a box to no signature to a missing date. She took so long to get it right, that the doctor had to fax a new prescription form, because the old one had expired. What finally got my case approved was my sending a personal email to my doctor to explain the situation. I must say that I was not my “nice” self that day and even said that I felt as though I was going to be “dead” before they managed to get these two pieces of paper right. After he received that email, my papers remarkably arrived at DestinationAccess with all of the i’s dotted and t’s crossed.

I suppose my reason for this rant is that even though you may be dealing with highly trained medical professionals, you must continue to do your due diligence and be your very own, patient advocate. Had I not called, and continued to check with Destination Access on the progress of my case, I still would not have received my medication and would be entering into the danger zone. It is always good practice to follow up on anything that is truly important to you, or your health. Ask questions and double and triple check everything. Be smart; know your body, your disease and your treatment, don’t let someone’s ineptitude affect your health, your mind or your spirit. Make certain to trust and believe in yourself, and to do whatever it takes in order fulfill your needs.

Monday, March 5, 2012

A Frog in My Throat!

My Froggy Girl!
So, upon arriving in Phoenix, I get into the family wagon and immediately starting hugging and talking to the kids. My four year old granddaughter says, “Nana, what is wrong with your voice?” I respond, “Oh, honey it is nothing to worry about, I just have a frog in my throat.”

We continue the long drive to their home, and after about five or so minutes she says, “Nana, how did the frog get in there? Did you leave your door open when you were sleeping?” Of course, her mother and I cracked up and I said, “No, I didn’t leave the door open,” and before I could continue, she said, “Well then, he must have come in through the window. Why did you leave your window open?”

I told her that I didn’t leave my window open either, and that it just sounded like there was a frog in my throat because I was a “little bit” sick. This seem to satisfied her wild imagination; at least until morning. As soon as I got up, she wanted me to talk; I did, and of course, the “frog” was still there. She was a bit relieved that I still had my frog, and really glad that he did not leave my throat and move on into hers. However, she was a bit surprised that he was still there.

She said, “Nana, you were supposed to sleep with your mouth open so the frog could go back outside. I made sure that I kept my mouth closed, all night, so that he couldn’t come and live in my throat. How long do you think he wants to stay in there?”

Needless to say, my “frog” stayed in my throat for my entire visit, as well as for many, many more weeks after returning home, but I will say, that my “frog” made me smile more often than not!

Gotta’ Love Kids!!

Sunday, March 4, 2012

CML and the Holidays!

For me the holiday season has always meant spending time with friends and family. It is a time to gather and enjoy each other’s company, and to be grateful that we are all still around to do so. Since this year was the first year, in which the holidays have rolled around since I was diagnosed with leukemia, I was especially grateful to be alive and able to enjoy time, with those that I love.

I was sick with some sort of upper respiratory “thing” for most of the holiday season; of course, it began three days before my visit to see my son and his family. I was not sure what to do, as I didn’t want to take any chance of getting my four grand kids sick, so I made the dreaded phone call to my daughter-in-law. She simply said that if I could make it and felt up to it, to just get on the plane, because risking getting the kids sick was a far better option, than telling them that I was not coming.

While I did not feel very well, I knew that it was my only opportunity to see the kids before Christmas, and well into the new year. I figured that it was a one hour plane ride, and I could be sick there, just as easy as I was sick here; but there, I had four beautiful faces to look at, that would certainly improve my mood. We really had a great time, and I came home exhausted, but my heart was so full, that I did not care!

It seemed that no matter what I did, I could not kick the cough and fatigue; my oncologist figured that it was viral, and would just take time. Despite being sick, my white count was only 6,130; it is normally in the 3,900 range, so it was elevated, but obviously not enough to kill the virus. Ugh, the joys of CML!

The “crud’ lasted well into the new year and is responsible for my lack of energy and passion. I missed dancing more often than not, and I have neglected my blog, as well. It was all that I could do to keep up with dinner and the laundry, and the few extra holiday things, thrown in from time to time, (thank goodness for online shopping!). It is my favorite time of year, and I was missing out in a big way. I understand how people can become depressed during the holiday season; fortunately I did not, probably because I was able to channel what energy that I had, into doing something that I really enjoyed.

I did not realize how many of you actually missed my stories and information, and worried when you did not “hear” from me; hopefully I can stay healthy and become more focused on that book that so many have encouraged me to write. I will also attempt to catch you all up and to write about all of those great things that some of you have been wondering!

Here’s to a better New Year!

Things to Help Make Your Hospital Stay Better!

This is a re-post by request!

If you or anyone you know and love should end up in a hospital bed; here are a few tips to help make your stay more comfortable.

First and foremost is when you are in your room, close your door! There are many reasons to keep your door closed both night and day. The most important one is that it is so much quieter; you and your visitors are allowed peace and privacy. You can escape from the hustle and bustle that is going on around you; and at night you can actually get some sleep. The other critical reason for keeping your door closed is that unless you WANT to be a fish in a fish bowl, you will protect yourself, not only from the other patients’ stares as they are doing their laps, but from all of the other patients’ visitors as well, not to mention the plethora of  hospital employees that continually roam the halls.

Let me just tell you what I saw on my daily jaunts around the nurses’ station; there were several very elderly people, some falling out of chairs, others’ lying in their beds with their heads dangling and their moths’ open; almost always alone. It was very depressing and sad. Then there were the screamers, which every time you walked by they would scream out in pain. Yes, I know I screamed when I had my bone marrow biopsy, but my door WAS closed! One of my favorites was the guy that had his bed sitting straight up; he had his shirt off, his covers down and he thought that he was “all that, and then some”, it was hysterical, he would look you straight in the eye and grin when you walked by. Rather, creepy! Sometimes you would witness a patient with a full room of visitors and often you witnessed patients hobbling to the bathroom with their rear ends sticking out of there hospital gowns. So unless you want to become part of the entertainment; I would suggest closing your door. And yes, you can train the hospital staff to close it behind them when they leave; it just takes a few reminders per shift.

Second important tip is to be really nice to the hospital staff. You are at their mercy! This trickles right down the chain of command and gets you two egg croissants when you ask for them. If you are nice to them, they answer your call button on the first buzz.

Third tip would be items of comfort; have someone bring you your own pillow, slippers, socks,  robe and jammies. You will be much more comfortable in your own clothing and resting your head on your own pillow. Ear plugs and an eye mask are essential; Desert Regional Hospital actually gives them to their patients.

Other items of comfort might include Charmin toilet paper, soft Kleenex, Chap Stick and lotion, a hairbrush or comb,  snacks that are available when you are hungry and an electric hot pot that you can either make tea or coffee, or heat up that cold soup from lunch when you are ready to eat it. A notebook and pen are also nice to have so that you can jot down questions when you think of them. A large folder or envelope is helpful in keeping all of the papers that you will be receiving organized.  A bag that holds all of these things and hangs on the side of your bed is great, too.

Bricks for the Brave!!