Here is a little back story to this post, in January all was fine and normal. I was working 40-50 hours a week in management at a convenience store and I noticed I had been more tired than usual but I thought it was just from working so many hours and my shifts flipping back and forth from first to second, etc. Well during the middle of January, I started having pain in my ribs and in my sternum; I thought since there was bloating also involved that if I drank something carbonated and could belch that it would help. Unfortunately, this wasn’t the case. Things got worse. I finally went to the ER the next morning where they thought I had blood clots in my lungs, turns out they read the CT wrong and were not familiar with the anatomy of a Fontan patient. A month later, I was finally able to see the Adult Congenital Specialist who immediately wanted to throw me into the hospital without a plan of action, from then on it was a disaster.
If you know me, I don’t like hospitals. I don’t know if it from the amount of time I spent in them as a child or just the weird vibe I get when I am there. I’m honestly not a huge fan of even visiting people in the hospital so obviously, a Dr just wanting to admit me without giving a reason was very unsettling.
After numerous rants about my experiences from January to June, my mom told me I should write a book- I started thinking, a book wasn’t going to happen but a Blog, a Blog was possible so here we are. I invite you to join me in my journey as I advocate, raise awareness, educate, and create to stay sane (ok I realize I’m just simply trying to keep what little sanity I have left). I will share my story of how Congenital Heart Defects and Congenital Heart Disease affects myself and my family, as well as the impact it has on others who battle the same conditions or have family members with the same condition. I will have a few guest bloggers join me and I hope you will welcome them with open arms. I also plan on sharing the crafts I work on as well as anything else that is important to me.
You can find out more about me on my About page.
Now here is why you originally came, 10 things Patients want from Doctors.
- USE ENGLISH– although you went to medical school, we didn’t. Please explain things in terms we can understand. If you are going to use medical jargon, break it down to a level we can wrap our heads around.
- BE PERSONABLE– we are coming to you in times of crisis, while this might be your everyday thing, we need to feel secure around you; there is a good chance this is a new experience for us.
- EXPLAIN WHY– if you want to do something, explain why; tell us your reasoning. My biggest complaint is when Doctors just want you to be okay with wanting you to undergo a procedure or testing without knowing why it needs to be done or the benefits. If you feel I should be put in the hospital then tell me why.
- ADMIT WHEN YOU DON’T KNOW– be honest with us if you don’t know what the outcome or what the future could hold then admit that you don’t know. One of my biggest pet peeves is when Doctors just say something to have an answer to give. Don’t use scare tactics to get us to do things, don’t exaggerate how good or bad our condition is.
- DON’T PUT US THROUGH MORE THAN WE HAVE TO– while I understand that testing is important and it is how you determine what is going on, many of us either do not have insurance or our insurance is subpar. Tests and procedures are expensive and often painful. If something isn’t necessary then don’t do it, medical bills pile up without extra help.
- TAKE YOUR TIME– we are taking time out of our lives to travel to your office for our appointments if we got to see you for more than five minutes that would be great! If I’ve waited longer for you to come in the room than you spend talking to me, there is a problem. Don’t push us off on your Nurses either.
- COMMUNICATE– talk to us, tell us what is going on. If you want a procedure done or a follow-up appointment then you have to communicate that to us. I cannot stand when I get a letter in the mail saying I’m scheduled for a test (that I had no idea about) and I do not even know who ordered it!
- TREAT US LIKE FAMILY– Tell us what you would tell one of your family members. If your sister, brother, children, or wife had these symptoms, what would you recommend? Not everything HAS to be tested asap. We know some things can wait and see. Help us know the difference.
- DON’T BE A PILL PUSHER– medications are not always the answer and sometimes they can do more harm than good. As a patient with Fontan circulation, I already have issues with my liver. Be mindful of that when you want to put me on a ton of medications. I would rather go the natural route if possible than taking medications, those add up quickly too and insurance doesn’t always cover them.
- STOP WANTING TO SEE ME NAKED– please advise your nurses that if you don’t have to have me completely undress then allow me to maintain what small amount of dignity I have left!
Let me know what you would add!