Speaking To Doctors

I was given a wonderful opportunity today to speak in front of the women of my MOPS group and share our story about Ryan's journey with illness. I think the more and more I get to share about it the more and more it gets easier. I find it almost embarrassing how people can come up to me and call me an inspiration and say wow I don't think I'm that forward or I can't do what you did. To be very honest, it wasn't me, I get just as nervous asking tough questions as you do. I never once asked the doctors if the blood clots were fatal, I knew the answer (I researched it, I read the autopsy reports), I knew the percentage, I just didn't want to hear anyone say yes. I didn't want the slightest doubt in Ryan's head that he wasn't going to be okay. I put all my trust in the Lord and He helped guide me.

Before the doctors would come in I'd say a prayer and just ask the Lord to be with me and ask all the right questions. His hand was on me the entire time and I could feel it, I knew it. I'd write out a list of questions to ask them so I was prepared. I HATE the feeling of not knowing or being unprepared, I just hate that, so after several times of feeling guilty or getting upset with myself for not asking the "right" questions, I just started taking notes.

The night after Ryan's surgery I went home and literally researched the fatality rate of blood clots in the brain and I went through a ton of case studies and I looked closely at the two men that were in their late 20's and early 30's about how and why they died. It was so hard for me to read that, but once I changed my attitude and looked at it like, I am reading this to SAVE my husband's life, I am reading this to discredit this case, it all made so much more sense. One guy the 28 year old, was bleeding every time he used the restroom for a week straight and he ended up hemorrhaging on his brain, well gee that didn't take a rocket scientist or a internal med (sorry I am loathing all internal med docs) to figure out that's not good. He hemorrhaged on his brain and died. I read the report and the autopsy and thought, well if he starts doing that I won't wait a week! The other guy was a little harder to figure out, but he had a pre-existing condition, well Ry did too, but I didn't spend too much time on that one, I just read about all his warning signs and tried to compare us to them.

Because I had all that info it got me started on the list, such as what about this; is this a warning sign; what are the warning signs; what should be avoided, ect. So, I guess basically where I am trying to go with this is, here are the things I want you to do if you ever feel intimated by doctors and don't know what to ask and what to watch for.

1. First and foremost, you need to be Christ follower. I have found this journey to be IMPOSSIBLE without Christ's hand, let me say that again, YOU MUST TRUST IN THE LORD. I'm not advocating you need to be an expert or be a church goer or anything like that (cool if you were). I just want you to believe and trust in Him. You can't just say well maybe there's a God, no you need to lay your life down before him and proclaim your love for Him and say you can't do this journey without Him, because I am telling you, you can't.

2. Pray before you meet with the doctors. Ask the Lord to guide your words and thoughts and help you to ask those tough questions. Ask for a clear mind. Ask for peace. Ask that the doctor be attentive to your questions.

3. This is where the list is handy, so get those questions asked first. At this point, this is where things get tricky, because depending on their answers you either feel good or you feel bad. There is usually something in that conversation that triggers you one way or the other. That is your gut talking to you, so trust it. I have found very few doctor visits where I am like, oh okay, most of them are like, yes I like this guy or no you don't know anything and why would I put you in charge of my care. I will say sometimes the gut comes into play at the second meeting with them as well. The doctor could be a nice person, but if they can't explain to you what's going on well enough for you to understand it, do they really understand it? For example, this was one of my most used questions and I used this early on with the bout of ITP. Have you seen this before? Have you treated patients with this similar diagnosis? Stop there, listen, if they say no, MOVE onto a different doctor. Your loved one is NOT their guinea pig, remember your loved one is NOT their guinea pig. If they say yes, follow up with how are they doing now, that opens it up for two things, one are they a good enough doctor to keep in touch with their patients and two, did they successfully treat them? If you hear something like, well unfortunately they passed, asked why, what condition lead them to that journey. Here are some good questions to include on your list:

• If the condition got worse what would that look like and how would you treat it?
• Is this the best hospital for this condition? This is a hard question, most docs will say yes, so if they say yes, I've asked this, Is this where you'd take your loved one if they had the same condition? If you get the No, you have an honest doctor and I bet they could get you to where you need to be. If you're already at a top hospital, say like Swedish, I'd believe the doc. I can't tell you how many times I heard, you're at the right place, we specialize in this, we've won awards on this, ect. Research your hospital; how does it rank and compare, same with docs, try to research them. I asked this question at Good Sam, but the reason it's important is the neurologist told me if things got worse Ryan would go to Swedish. So, once he said Swedish, it set me up for Swedish is the critical place to be, does that make sense?
• What is the plan for now? What specifically are you treating? This was interesting because with the clots I was so worried about the WHY are there blood clots and the doctors were more concerned about the clots themselves. Once, I got that theory the why was less and less important, does that make sense? They were there to treat the clots, once the clots were treated we moved onto the why. So can you see how you're making progress in asking questions and setting yourself up for the next step?
• I liked to ask questions I knew the answers to, for example, It's a good sign even with the clots that he has full use of the left hand correct? I'd ask something like that because the good docs would take that question and run with it, they'd confirm you're correct and then you'd get a follow up like, absolutely that's why it's so important that if there is a change in this, that, or the other we know how to treat. They'd elaborate so that's helps you build confidence in your doctor.
• When will we be released? This question comes into play in a few, but it sets you up for the future.
• I'd also like to summarize our conversation and ask some of the same questions or repeat what they were saying, for two reasons, I want to make sure they know what they're doing, ie being consistent and two they were paying attention to your questions.
• Can we get a referral to another doctor, we want a second opinion? I usually saved this question and the, We'd prefer to be at a different hospital question for last. I didn't want to upset the docs or set them up for failure in the beginning. I believe in giving them a chance before completely discrediting them before they have a chance to explain. Every time I have asked this, the answers was always no. Once you hear that no, BELLS should be ringing loud in your head about now. Then you know you are not at the right place and you're not with the right doctor. This is the reason you ask when will we be released prior to the transfer question, so you can hold them to your discharge. Here's where things can be tricky, you may just get an a hole for a doc, I know I've been there, this is what I found out. When we were trying to get out of the hospital with a transfer and no one would give us that and it was a Friday night and our insurance company was closed I sucked it up for the weekend. I called United Health Care Monday and explained our situation and said I asked and asked for a second opinion and a different hospital and everyone kept telling me if we leave at will we are 100% responsible for his care since we didn't have a doctors consent to leave,UHC care said that was completely false. She said even if we left on our own will and went to a different hospital our coverage would have remained the same for both hospitals. They didn't want us to suffer through bad care, that's not what it was intended for. So call your health insurance company and ask that question, what do you do if you're in that situation. If they tell you just what I told you write it down, document EVERYTHING they said, write who you spoke with, the time, the date, everything, so that way you have record of it. You can always leave a hospital at will, trust me, you can leave, no one is forcing you to stay there.

4. Be prepared in what you want. Meaning think of a list of doctors you want to see (either a specialty or a specific doctor). I did both. If you're unsure about a good doctor, I've always used the 5280 Top Doctors as a great starting point. I had one doc tell me that the list was just a popularity contest and he may have been right, but most of them have years of experience and are respected by other doctors. Other doctors nominate those doctors. I know in my profession I can tell you the heavy hitters. It's okay if you're doctor isn't on that list, we had a ton that aren't and it doesn't mean anything, it's just a starting place remember. Your insurance can give you a list of doctors in network, so read through those and research them, the Internet is a great place to start. I called the offices of some doctors and spoke with nurses and staff just to get the feeling of how the office is and if they were familiar with our diagnosis. I spoke to anyone that was willing to listen to me (I just told our story)! I moved on if the staff was short with me or didn't answer all my questions.

5. Build a support staff around you. You will feel alone at times, it's okay to feel like that, but take full advantage of the people in your everyday life. Do you have a nurse or doctor friend, do you know a good EMT, do you know anyone that's been through something similar, if so call them, pick their brain. I remember praying about what hospital to take Ryan to once we got released and I called my brother who is a fireman and asked him, he said consider University, but he was going to call his EMT buddies and I called my cousin who is an EMT for Denver and I prayed before I spoke to her and asked the Lord to speak through her and give me the answer I needed. The first thing Susan said was Swedish. If she every had anything happen to her or anyone else she loved without a doubt she'd be at Swedish. I knew at that point, my brother called me back and told me Swedish. Can you see God's hand in this, this is why you need to be a believer, because He gives you the discernment, it's all there. It's also good to have someone there with you at the hospital to encourage you as well that you are asking the right questions and they can help you and help your loved one. Know your boundaries with this though, if you're a private person and do better alone, play on that, but it's always good to talk to someone. It can be a family member, friend or even the hospital Chaplin, which sometimes is the best resource.

6. Finally, if you don't have the support staff and you still don't think you're comfortable in all of this, I promise you I am here for you. Call me and I'll try to help or if you just need a fire ball to come to the hospital and raise my voice, I can do that, I also know a good Italian family that has some baseball bats in their cars (just kidding, but seriously I do and I did have that offer extended to us)! I can just come and sit and pray with you too. Sometimes you just need people to pray with you and for you.

Well, I know that was a ton of info to take in, but I hope it can help at least one person. This is hard, this is really really hard to get through. God has outlined our path and changed my heart and mind to help those that don't think they have a voice, I am here to tell you, you have a voice and it's okay to use it!