Voices from the Roundtable

My Health 101

By Kurt Robinson

Another summer has come and gone. Although the weather would indicate summer is not over, the colder temperatures in the morning and the fewer hours of daylight tell me that fall has arrived. It was an eventful summer that was highlighted by my 25th birthday, a decent amount of golf (including quite a few holes I would like to forget), eating plenty of fresh berries, spending time with my family, friends, and girlfriend and, finally, a PICC line for several weeks and a few nights in the hospital to get a “tune-up”. While the last “highlight” was something that I wish hadn’t happened, I realized that it’s just one of those things that I needed to have done. We’re fortunate that we have the treatments and medications available to us to try to get our bodies healthier, even if it does come with several inconveniences.

Every time this Focus topic (Organ Transplants) comes around, I have a hard time thinking about what to write. That’s because I never have had an organ transplant. I don’t know what it’s like to go through, emotionally or physically. I realize not every transplant is successful, but I also have heard incredible stories from fellow Directors and others with CF, as well as those who have had a transplant who do not have CF.

The closest I can get to any of this, and it isn’t even remotely close, is having a “tune-up”. This summer I was given the choice of having my PICC line put in and then staying in the hospital for a few days, or going home and doing everything on a home health care/outpatient routine. I chose home health care for many reasons. I wanted the independence and freedom to be able to administer my own medications. I, like many of us, don’t like to stay in a hospital. I don’t feel like I get adequate rest, there is always someone checking on me at all hours of the day and night, and the food gets old really quick. And lastly, I didn’t want to miss any more time from work.

But after about ten days I realized I had made the wrong decision. My body hadn’t responded to the treatments, my PFTs hadn’t improved, and I knew I had only one option. It was one of the toughest days I have had in a long time. I cried for well over an hour after my doctor told me that I needed to be admitted that evening. I was frustrated because I felt like the ten days of home IV antibiotics were a big waste. I wanted to be able to spend the last few days of my girlfriend’s summer with her before she started volleyball practice. But more than anything, I did not want to go in the hospital. My previous trip, about a year-and-a-half before, was not a pleasant one. It was the only time in my life that I can actually say that I was truly scared because I didn’t know what was wrong with me. This time I knew it wouldn’t be as bad and the doctors reassured me that this was just a tune-up and nothing like my previous hospital stay.

They were right. My body responded quickly and in a few days I was out of the hospital and back to my normal life. I realized that the next time I have to have a PICC line put in I should think twice about the reasons I want to administer home IV antibiotics versus going in the hospital. I know that I got a lot more rest in the hospital. I didn’t have to worry about the stresses associated with having a PICC line and working at the same time. Nor did I have to worry about making sure to take the medications out of the fridge when I needed to or remembering all the steps for my treatments. That’s why they have doctors and nurses. That is why they call it health care, because they are there to care for us and to do their best to get us better.

That begins with putting your own health as the top priority, even if it comes at the expense of a vacation, missing time from work, or some other obligation or fun activity. This can be hard for me to do because I never want to miss out on anything or make anyone wait just because of me. But sometimes we need to slow down just a bit and say, “It’s going to be okay if I don’t get do to this.” or “Would you mind waiting a few minutes for me to finish my treatment?”. Most people are more than happy to do so.

It is also very important to be an advocate for yourself while you are in the hospital. Ask plenty of questions. Don’t be afraid to question a doctor or nurse when something doesn’t seem right. I was lucky because my girlfriend was also an advocate for me while I was in the hospital. We both made sure that the nurses were administering the medications correctly. It is okay to have a doctor or nurse write down on paper what time you will be receiving your medications and approximately how long each treatment will take. While we all would like to think that we are the most important patient in the hospital, the reality is that doctors and nurses have other patients and sometimes (but not often) make mistakes, too, and if you (and/or someone else) can be there to catch these missteps then it benefits everyone. Don’t be afraid to ask for more hours of uninterrupted sleep each night or to ask for food if you’re hungry.

Remember that YOU are the one that needs to get better and YOU are in the hospital to get better. YOU can make a real difference in your health and health care by putting yourself ahead of everything else. The outcome can be a positive experience and you will be proud of yourself and ready to enjoy a hospital-free life again.
Since fall has arrived it is time for me to pack away the shorts, bring out the warm clothes, watch plenty of volleyball and football, get my flu shot, and be even more conscious about my health as the cold season approaches.

Take care and keep smiling! ~Kurt

Kurt is a former Director of USACFA.