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!

My Magic Wand

We all had a pretty good weekend. I had a dear friend take me to a concert on Friday night and the band was great. It was pretty mellow and it got me thinking a lot so that is always a scary thought! As opening band was playing my girlfriend was telling me about the headliner and how she follows them and just how great they are. I didn't think that we were talking very loud, but apparently the lady and gentleman in front of us scolded us for talking like we are three years old or something. Of course it upset me. It wasn't because they had been talking too or that they didn't tap the teenage girls on the shoulders in front of them for giggling and talking the ENTIRE time for both shows, I was angry that they made me feel guilty.

It finally dawned on me how much anger I actually have. The majority of my anger comes from our battle with CVST and people's nature. I haven't once been angry towards God, which I know some people go that direction when a crisis hits, and I haven't been mad at Ryan for the clots, I am just super ticked off at all the ignorant people around me. I am upset that a driver cut me off, what if I was on my way to the hospital to visit Ryan; I am mad at the idiots sitting in front of me because I needed to be there and chat with girlfriends; I am just mad at anything and everything around me.

I am so lucky to be in the real estate business because yesterday as I was putting up a listing sign I beat that sign with my mallet and boy did it feel good. It brought me back to the Swedish Hospital stay where one day I showed up just in a terrible mood. I was just so upset with everyone around me and Ryan just looked at me and said what's your problem, why are you so mad. I of course had several good reasons to be upset that day, but I just told him I want to punch 18 people in the face today. I've never been in a fight or been a violent person, but I felt for a split second I wanted someone else to feel, and I mean REALLY feel pain.

It's like the scene from Steel Magnolias where M'Lynn says," I don't think I can take this! I-I just wanna *hit* somebody 'til they feel as bad as I do! I just wanna hit something! I wanna hit it hard!" And then Clairee grabs Ouiser and says, "Here . . . Hit this! Go ahead M'Lynn, slap her!" By that point you are just crying your eyes out and then laughing your butt off and that's it, that's how I feel. I just want to hit someone until they feel as bad as I do. Most likely slapping someone in the face wouldn't be good for me or for the other person, but maybe it would!

Because I decided I can't go around slugging people in the face, I want to have a magic wand and it would look similar to the huge Hamburger Helper hand and when someone annoyed me (friends, you can breath easy right now, ALL of my anger has been directed to total strangers) I'd pull that little beauty out and slap them across the face. I am hoping it leaves a giant red mark across their face that says in red, "I didn't show GRACE."

Grace is an interesting word isn't it? I feel like more and more people don't know what that means and don't care at all to show it. Why do the women in the stores like to tell me how to parent and why do doctors act like I can't watch a spinal tap, and why do people think because I am a blonde (not natural of course) I must be uneducated. I don't walk around and judge people and to be totally honest since this all happened to us, I now shrug off all rudeness and just say well maybe they have a lot more on their plates right now than I do.

I of course am not advocating people have to act or behave like me, but what if, what if people just showed more grace in their day, do you think we'd notice?

Speechless

This morning I had the opportunity to thank all of my MOPS moms that were so feverishly praying for us and I think for the first time in my entire life I was speechless. How do you thank someone for saving someones life? There is no doubt in my mind that without these prayers my husband wouldn't be here today. I know the Lord heard their pleas and bestowed mercy on us. What do you say? What do you say to the thousands of people that have genuine concern for Ryan and us and prayed day and night for him, I don't know. I feel like thank you will never be enough. It tears my heart out because some of these women I haven't really even bonded with yet alone been as good of a friend to them as they have to me. What do you say? I feel so embarrassed and ashamed that I haven't taken more time to be a better friend. I'm not sure how to build on those friendships from here. I don't know, but I'll think of something.

I keep thinking about our first appointment with the Internal Medicine doctor and how he told Ryan he's really lucky to be alive. How Ryan's body was trying to shut down and he is so fortunate not to have any permanent damage. Part of me wanted to say, well do you know how many people are praying and prayed for Ryan, of course his body wouldn't give out; then the other part of me wants to let it sit in the bottom of my soul and just dwell on the what ifs. Of course the first option is much better, but the second is the one that gets me emotional.

I am starting to feel great about a lot of this and we are getting back into the routine of things. I learned today that I don't think I'll ever be able to hide my emotions when it comes to my love and fear of Ryan. The thought of loosing him breaks me, but knowing he's here with me now lifts me up. I couldn't do this journey without all of these amazing people in our lives. Remember, Prayer Changes Things.

Oh to be Humbled

When Ryan and I were driving down to the doctors appointment we were talking about so many other families that have it worse or have had it worse. We had a friend that had flesh eating bacteria on his face, another friend almost lost her children, another friends son has CP, our great friend is battling a brain tumor and chemo, and another friend of mine has a brother in law going in for brain surgery on Monday for the umpteenth time.

If Ryan can come out of this with just a few headaches and surgery and of course the thousands in medical bills (that you're really never prepared for), I'd say we are incredibly blessed.

We are kind of having some trust issues with Ryan's internal medicine doctor, we found him to be quite arrogant and not really listening to us, not to mention he acted too busy to manage Ryan's blood thinners. After we meet with the neurologist she called the internal medicine doctor and asked him why Ryan's numbers haven't been consistent and that she feels something else needs to happen to get his numbers therapeutic. He told her to send Ryan over and he'll do a blood draw. Well, he ended up meeting with Ryan and he kind of went wacky, he told Ryan to take three shots of Heparin, then increase his doses, and then he told Ryan that he told Dr. Chang if she was so concerned about Ryan and his coumadin levels, she should manage them. Really? Really? How is it possible to have someone in that role of a medical professional question and judge another professional because he felt she (the owner, the hospitalist, the one that specializes in critical neuro patients) was wrong in being conservative. At that point we lost what little faith we did have in him.

To make matters worse his nurse was telling Ryan what a long day she was having and how stressful her job is. She just started complaining about patients and her job. It really got us thinking, you know, we all face challenges everyday for some of us that's just getting out of bed is a challenge and for others that's retraining your brain to learn how to feed yourself as an adult, we ALL have challenges. But, what we don't need is we don't need to see people not being humble for what they have. This nurse works with hundreds of patients a day that are grateful just to be able to get out of bed and get their chemo, she sees patients that have beat the odds and are walking and talking again, and you know what she has a pretty amazing patient that should have died two weeks ago with blood clots in his brain and he was unable to move portions of his body and he went without seeing his family for nine days; sorry she had a long day. I've had a long three weeks.

A few days after Ryan was released we went to Costco to buy some bookshelves for the girls. We went to three different Costco's before we bought them. I pulled the car up in front of the store and Ryan was loading it in the back and we were having problems getting it in. We sat there for maybe about two minutes getting this thing in, well a car came up behind us and started yelling at us and telling us to get our asses moving. I walked up to her window and said sorry it should only be a few minutes, she continued to curse me out and said a whole bunch of things. I wanted nothing more than to walk over to that drivers side of that door rip her ass out of the car and tell her look we've just spend nine days in a hospital because my husband has blood clots in the brain, I'd LOVE nothing more than to beat you with my bare fists so you can experience how tough it is to manage blood clots in the brain, you game? She upset me so bad and I dwelled on it for days, I think I'm still angry as I write this. I guess you can't expect a lot from humanity.

I used to have this passion for mothers of children with disabilities how and why that was my passion I have no idea. I think it's because everyday I wake up and I know I am not a strong woman and how hard it would be for me to take that new role on. Although my heart still aches for those parents my thoughts are with those that have to be everything to their spouse in their time of discomfort. When we were on the critical care neuro floor at Swedish, Ryan by far was the youngest on the floor, by several years. I think the next youngest person was a Colorado State Patrol Officer and he looked like he was in his late fifties. His children and wife were there everyday and although we never spoke to each other I felt their pain and they felt my pain. It's a weird world to be around people that are fighting for their lives and to see the raw emotions and the faces of the families. When I use to go and sit with Ryan for his soft chemo my heart ached for all of those people that were there alone, so many people went through their battles alone, how terrible.

I can say that at so many points of this I too have felt alone. I was never alone I know that and I know that at any moment I could have called a friend and I wouldn't have been alone, but you are you are really alone at times. I just can't imagine if truly no one was EVER there how difficult that would be. I guess that's what makes us different as believers, because in our hearts we know that we are never alone, He is always with us.

Spiritual Warfare

So, I decided to create this blog, mostly for myself. I am not one to sit down and journal, but after posting a few updates about my husband Ryan on his caringbridge websitehttp://www.caringbridge.org/visit/ryanheckenberg , I found it therapeutic to write and get all my feelings out.

A brief summary, my husband, Ryan, is 29 years old and we were high school sweethearts and have been together 11 years and married for 7 of those 11. Ryan has battled ITP in the past and we went through that journey together in 2004 and he relapsed in 2007. Now Ryan has "extensive" blood clots in his brain and this is our new journey. On the ride with us is our two little girls. Hayden who will be three in April and Ally who just turned one in December.

I remember sitting in the hospital room with Ryan at Good Sam and of course I looked awful. My eyes were swollen from crying so hard for days and just feeling the pressure of Ryan's seizures and having that emotion of being so helpless. I was so helpless, I couldn't do anything for him. I wanted so bad just to take his place, I wanted to give his body a rest, I wanted to punch someone in the face, I was just filled with so many emotions.

One of the nights I had this overwhelming sense of coldness and I knew, I knew right away, Satan began his attack. I quickly prayed and told Satan to go away and Jesus would make me warm again, and sure enough I was warm again. It was hard for Satan to get to me that night, but I assure you he tried.

I've now come to acknowledge that my biggest fear in this is loosing Ryan. I sometimes wake myself up in the middle of the night to watch him sleep and make sure he's still breathing, something I did all the time when the girls were just little tiny babies. I get so sick to my stomach thinking of doing this alone and Satan knows that and he plays on my fears. I battle Satan minute by minute and I am so lucky I have friends praying for me and helping me through this.

A friend of mine gave me some good advise, first she said talk back to Satan, yell at him if you have too, which I am. Second, thank God in advance for healing Ryan. Wow, what a concept right? Thank the Lord for doing this, I love it, what a great thought and it just shows that I am confident He will heal him. I know the Lord will heal Ryan, I know it, in my heart of hearts I know our life will return, but as of now, I continue to walk by faith and on eggshells.