Healthcare, Patients, and Consumers

Over the last 6 days, I have been battling a health issue - something wrong with my kidney. I cannot help but realize how SLOWLY this process works. I have been in extreme pain, and it has had far reaching effects on my life and my family.

First, I went to the ER on Saturday. I was told to follow up with a urologist. I called my existing urologist and 8 others and couldn't be seen until Wednesday. I was having trouble keeping the pain in control and I was starting to really worry. Without another option, I went back to the ER where I was told again to see a urologist. At least Wednesday wasn't far away at that point. Shouldn't' it be easier to get an appointment for situations like this?

Then, I see the urologist who orders a nuclear renal scan.  When he spoke with the ER doc on Monday, couldn't we have set this up to have done BEFORE the office visit?


They hand me a prescription for the scan and recommend the hospital radiology department that is closest to my house. I call them and they say they can do it December 5th. REALLY? That is 19 days away.


I call another hospital that is farther than my house. She says they can do it a 6 days from now which is my 40th birthday and the day I fly to Tennessee. I beg to have it done that day. She says not possible. I offered to pay her $100 if she could get me an appointment that same day. It didn't work, but I did get an appointment the next day. Better but still a long time. When you add in the time for it to be read and the time for the doctor to then get the reading and the time for the doc to then call me, it is a really long process.  Couldn't we allow patients to pay extra to speed up this process similar to how I can pay an after hours fee for other services?


The bottom line is that I have been to the ER twice, a primary care doc once, a specialist once, had a CT scan, two ultrasounds, and a nuclear scan, and 6 days after I started having severe pain, i am not a single bit better off than I was when it began. Yes, I have pain medicine that makes me be able to tolerate it, but it puts me to sleep and I can't drive when I am taking it. The time that it takes to accomplish this continues to add to the bill as nobody is as concerned about making me well as I am. The rest just seem to pass me on to the next person without any responsibility of SOLVING the problem.

I have seen a lot of debates lately about whether we should call people patents or consumers in healthcare. At this point, I think patient is the only word that can be used - especially since you have to have a lot of patience to get anywhere. I have been thinking about Morgan's day of diagnosis when I found out that we couldn't get a specialist appointment for over 3 months. There simply has to be a better, faster, more efficient way, especially in severe situations.

Thankful Day 17

Today, I am thankful for medicine. As much as I have been frustrated by the SLOW process of healthcare (blog coming soon), I had an incredibly fancy test today to measure how my kidneys are working. It was completely fascinating to understand how they were measuring the input and output. We have some amazingly smart people in this world. Also, I was humbled today by the person administering the test who has survived ovarian cancer, had a kidney stone that was 4cm (fist sized), and who is having open heart surgery now. She was such a positive caring sprit, and I am thankful for her.

Also, I am thankful to have met Dan Hutchens. He died very young last night, and he will be missed. I don't understand how that happens to such a young guy, but my thoughts and prayers are with his family tonight.

Thankfulness Day 16

Today, I am thankful for ice cream. Morgan and I had a rough day, and she asked if we could go get some ice cream. As we sat together and ate it, it seemed like everything would be ok. I cherish those moments.

Thankfulness Day 15

Today, I am thankful for my brother Mark and his spirit. Mark is always there for everyone he loves. It is so nice to have him to talk to when things are good, bad, and all in the middle. It is also fantastic to know that if I call mark and say, "is there any way that you can....", the answer is almost always YES. THANK YOU MARK!!! Love you.

Thankfulness Day 14

Today, I wasn't feeling well, and I am very thankful for the support of Mike and Morgan. They both came with me to the ER for the second time in three days. Mike drove us there and got food for he and Morgan while Morgan held my hand when I got an IV and helped me get the IV to the bathroom and back. They were both so loving and stood up for me when I was not able to speak for myself. I love you both dearly. THANK YOU!

Thankfulness - Day 13

Today, I was thankful of sleep. I got to sleep in today which was magical. It is a rare day where we get to sleep in and relax. I was feeling badly all day with this kidney thing, but with the meds I slept. Ahhh....nothing like sleeping in and being in your own bed.

Gimme My Damn Data

To quote e-patient Dave, "Give me my damn data." Around midnight or so yesterday the 11th, I starting having pain in my right kidney. Since i have an extensive history of kidney stones, I knew what that likely meant. However, this time seemed a bit different. Maybe an infection or something? The pain became unbearable around 7pm, so we went to the ER. I had pain medicine to take but this seemed just enough different than my "normal" kidney stone past, I felt like I should get it checked out. My kidney is VERY tender to touch. I don't remember ever feeling this before. I am almost in tears just from sitting in a chair and having the chair barely touch that area. Additionally, my right side is physically swollen where the kidney is.  That isn't typical for me either.

So, off we go to St. Joseph's North - the newest ER and one close to me. It was a fabulous ER from a design perspective. Very nicely done. My nurse, Tiffany, was awesome. They ordered a CT, urine, and blood tests. I had some Toradol via IV and some Zofran. It helped for an hour or so and then the pain started getting worse. I think Tiffany must have gone on break as we couldn't get ANY help for almost an hour. My pain was getting worse and worse and worse and my IV was dry. My daughter pushed the call button three times and went into the provider hallway to get help. It was an excruciating hour. When she came back, she administered the morphine that was ordered an hour before. The CT scan showed stones in kidney but no stone in ureter. However, it showed inflammation in the ureter. The doc said that I may have just passed a nasty stone and the inflammation may be causing pain that feels similar to a stone. I asked for a copy of my blood work, urine, and CT scan, and I was told that I couldn't have it. I would have to wait until Medical Records on Monday.

Today, I am still in extreme pain and even with the toradol, percocet, and zofran, the pain is pretty significant. I keep sitting here wondering what the results all showed. I wish I had the CT report, the blood work, and the urinalysis report.

Recently, I found the Society for Participatory Medicine (SPM), and I loved all that they are doing. Managing Morgan's care with her Dermatomyositis can be a full time job just trying to keep her health information recorded and organized. I feel strongly in the e-patient movement and enabling patients to be partners in their healthcare and having choices in the treatments that they receive. Now, this kidney stone event has just added to my love for this movement. GIVE ME MY DAMN DATA!

Day 12 of Thankfulness

Today, I am thankful for pain medication. Today has been a day of a LOT of pain medicine. At around midnight as the new day began, I was in a hot tub at a party. My back started to hurt where my kidney is. Since I have a history of many kidney stones, I immediately had that ugh feeling.  So, I was very thankful for pain meds for my head (tequila) and for my kidneys (dumb stone). As a by product, they also helped with the realization that my poor vols football team is DREADFUL.

Day 11 of Thankfulness

Today, I am very thankful for the veterans who fought for our freedom and for the veterans who make stands to protect our freedom. I am so proud to be an American and I appreciate all of the sacrifices each and every veteran made/makes for all the rest of us.

I am also thankful today for the fact that my daughter wanted to be with me so badly on 11/11/11 at 11:11 that she passed up going somewhere with her friends so that we could spend alone time together at that specific moment. What an amazingly sweet idea. I LOVE YOU MORGAN!!!

Day 10 of Thankfulness

I am thankful to have a wonderful home where we have great times as a family. I love the open layout of the house which keeps everyone closer than our old house where kids seemed so far away when they were upstairs. We love the screened in porch "room" the best as we get to be outside without all the annoying bugs. :)

Day 9 of Thankfulness

This is probably cheating since i already listed family, but I am so incredibly thankful to have my parents as my parents. I truly cannot imagine better parents. Of course, when I was 16, 17, and 18, I didn't quite have that opinion and I am pretty sure they wanted to disown me a few times. :) Man, I hope that Morgan is a bit better of a teen. :)

But, the important thing (as my other says) is that they have been such incredible role models for me and they have ALWAYS ALWAYS ALWAYS made sure that I knew they were on my side. When I think back on my life, no matter what the situation was, I always call my parents and talk about it. They listen, try not to judge, and offer advice or assistance or sympathy or just listen. They also know that i might not do whatever it is that they are suggesting and that is ok. They allowed us all to make mistakes without holding it over our heads for the rest of our lives like I see happen with friends parents.

Also, they are so amazingly generous that they have always tried to make sure we had things even if it meant they went without. I certainly didn't always understand that as a kid, but I do now. They have taken us to amazing travel places so that we could experience them, and it has been incredible to get to see such amazing places. However, the BEST part of any of those trips (hands down) is that we spent such time together as a family. It has provided all of us with such a foundation that we can all rely on when times are good and bad.

My parents also worked very very hard. They taught us all that hard work is a very important personality trait. All three of their kids are extremely hard workers and I think that is a direct lesson from our parents.

On top of it all, I think they really taught us how to treat people. My parents have a great respect for people. We were taught that respect early on and you can see it in all of our lives.

I could probably go on and on and on and on about my parents as they truly are the most incredible people I know. THANKS MOM AND DAD!!! I love you so much.

Day 8 of Thankfulness

I am so very thankful for CureJM! When my daughter was diagnosed with Dermatomyositis, we were lost until we found CureJM. They are an amazing group who do incredible things educating on JM and advance the chances of a cure daily by funding direct research.

Day 7 of Thankfulness

I am so thankful to be living in the computer age and to get to watch technology advance so quickly. I love being part of this experience and getting to go from using a commodore 64 to having such amazing things as amazing choices on TV, unlimited access to content on the web, microwaves, iPhones, iPads, computers that do so many more amazing things every day, iTunes, "apps for that" and so much more. I think about all of the changes in my 40 years (ALMOST), and I am excited about what is to come. I can't even imagine what my kids will create since they have grown up with this mindset.

Day 6 of Thankfulness

I am so very thankful for the Wesley Chapel Tri Team. I have accomplished so many goals and gained so many new friends from this group. But even more importantly, they kick my butt if I don't show up. I love that about them.

The ATM Ate my Card

I rushed through a Bank of America ATM yesterday as I realized Morgan didn't have $20 for the carnival she was going to. Instead of crossing the street and going to my bank, I took the "easy" way and used the Bank of America that was right there. About 2 hours later, I look for my Debit card and it is gone. I retrace my steps through Publix and think it must be somewhere. Then, with that feeling in the pit of my stomach I realize that I left it in the Bank of America machine.

So, Wachovia figured this out years ago and gave you your card back BEFORE it gave you money and a receipt. I guess Bank of America hasn't figured this out. I am so used to getting the receipt and moving on, that I didn't even think about this different machine. Shame on me.

Thankfully, some nice person called it in as lost immediately so it was all ok. Whew. Score one for the good guys.

Day 5 of Thankfulness

As I continue the month of thankfulness...

 I am thankful to have always had a job that paid the bills - sometimes barely! But I have always made it. I have gotten to do some amazing things in my career, and I feel lucky and blessed to have gotten to know so many amazing people and to do some many things to help people.

Day 4 of Thankfulness!

Day four of thankfulness

4. I am thankful to have some very special friends. You know, the kind who are there for you when you are your best and who celebrate that but also the kind that are there when you are your worst and who pick you up and kick you in the butt to get you back on track. I don't know how I would have survived the last year of my life without my great friends (and family of course!).

Thanksgiving Thankfulness

I have seen people posting every day about things they are thankful for. I am a bit behind, but it sounds like a good thing to do.

So...I guess I have three to catch up on...

1. I am so very thankful for my incredible family. I have such a fantastic family in my parents and brothers who have been fantastic to me as I have grown up. I have a fantastic family now with my wonderful husband Mike and all four amazing kids. I have a great new family of "in-laws" who gave Morgan cousins - lots of them! I am so very thankful for ALL of them.
2. I am so thankful for having the chance to be a mom and a step-mom. I didn't think I would be able to have a child myself, and Morgan has been my miracle child all the way through and then some. We have been through good and bad times, but I am so thankful to have her! On the other hand, being a step-mom has also been an amazing experience with three amazing kids. It is amazing the different relationships you have with different kids, and it is so very fun and amazing to watch them grow.
3. I am very thankful for my husband Mike! He has been such an amazing friend to me and has been so supportive of me and of Morgan. He is a great dad to all the kids, and I know he loves them all very much.  I am sure these crazy career changes have been hard on him, especially when the travel tables reversed and I was traveling more than him! I am so lucky that we met at good ol Medic back in the day. :)

Ok, those were probably the easy ones! :) Whew...only 27 more to go!

New Beginnings

I had forgotten how refreshing change can be. I tend to agonize over big decisions carefully weighing all the options and making excessive lists of positives and negatives of each option. In the end though, I think I always end up going with my gut. Sometimes, that works. Sometimes, not so much. I hope this one is right because it certainly feels right!!!! The buzz I have felt today (no I haven't been drinking this time) has been electric. Something is amazing about creating new things from scratch. I truly love it!

What a whirlwind of a few years with three aquisitions within a 3 year period...a bit too many. I have thought of writing a book on what I learned through all these acquisitions. I certainly learned some things that work well and some things that SHOULD NOT BE DONE - EVER! :) It is funny what acquisitions do to people. The first two were SO close to me that it was difficult to see everything happening at the time. The second one I felt much more prepared for, but still looking back it wasn't so clear. However, the third one was a little farther removed, and it was so very interesting to watch how people handle it. Sometimes, I saw others make the same mistakes I had made in the past, and I thought,  "wow I won't ever do that again." Other times, I got to share experiences with others and help them figure out ways to deal with situations in a positive way and that felt really good.

It had been such a hard fall last year when the product that was my baby was not going forward. It had such amazing potential, and I felt much like I do with my kids when they don't get a shot at something or something doesn't go their way. But, it could do such great things! But, don't you see this amazing thing? Seriously, you don't get this? I understood the business decision and why, but it still hurt. Then, I had new teams and we really came together. I really felt great progress being made, and I enjoyed them all. We had fun, and we worked hard. So, this made it hard to make a decision. I find over and over in my life and career that the people are really what make all the difference. Part of my challenge with the software issue wasn't the software, but it was having to tell the team that it wasn't going forward. Worrying about the team and not wanting to lose the great team we had. I also didn't want to let me newer teams down.

In the end though, we have to do what we think is best for us. I really enjoyed my time at all of these companies - weird that with them all combined I had actually worked for the same company since 1997 even though I left in 2005 and ended up back through the acquisitions. A ton of great people there, and I have so many friends there. But, when an opportunity of a lifetime comes around and has the opportunity to make a huge difference on the lives of your child and other people like her, you just have to go for it. Otherwise, you might always wonder....what if. So, new beginnings, new challenges...here I come!!!

And, I actually have ZERO business travel booked at this time which is really, really nice. Ahhh...bed....I missed you. :)