Monday, April 28, 2014

Joys of my Recent Healthcare Experience

Settle in, this is rather long

Last monday night, I felt a strange ache in my left side before i went to bed. I was on day 8 of a new diet and exercise plan where I was easing back into eating well. I had done really well going to the gym for the first time in forever, and I was walking and already feeling better. I have had a very frustrating year and a half plus of getting in the groove and then some major medical issue with me or my family arises. So, I was not totally shocked when I woke up on Tuesday morning with the pain severe. It continued to get worse until around 11:00, I gave up and went to the urgent care. I knew I should go to the ER but I didn't feel like a responsible citizen of healthcare if I didn't try the urgent care first.

The urgent care saw me within 30 minutes and decided that I needed to go to the ER. They faxed my exam info over as well as basic demographic stuff saying that it would speed up the process. However, when I got to the ER, it didn't seem to make any difference at all. They were busy though, so I just tried to be patient. It was rather strange the way the ER operated. First, a guy called me to a triage room. I tried to hand him the info the urgent care gave me, and he said, "I don't need any of that. I am just drawing blood and starting an IV." He had every person in the ER coming in and going through that first - before any symptom questions or anything. Odd. Then, he sent you back to the waiting room. Then, a triage nurse called me about 30 minutes later, and she took basic vitals told me to go back to the waiting room. Then, despite the urgency of problems, it appeared that they took people in the order the arrived. I may be wrong of course, but there was a woman puking her guts up next to me and she was still there when I went back. I was in horrid pain but wasn't puking everywhere. There was a lady there for a hurt foot. She went in before both of us. She didn't seem to be in any major distress, so it all seemed a little odd to me. Finally, they called me back.

Just a few other observations before moving on. First of all, I was clearly having a difficult time walking. It hurt SO MUCH WORSE when I was standing and walking than when sitting. I was never once asked if they could help or if I wanted a wheelchair. Secondly, the waiting area of chairs is pretty far from the check in desk and triage rooms, yet I kept having to walk back and forth and back and forth. It was agony. Then, they had me walk all the way back to the room. I was truly surprised that they didn't even ask. Now,  I suppose that was also stubborn of me since I also guess I should have asked for one.

The ER moved quickly. They were amazed by the summary I sent them from my phone using CareSync where I shared all my recent kidney stone history as well as the summaries from my prior two diverticulitis attacks. This pain was in a different place than my last, but I knew it was likely one of the two. I felt powerful given them all that info and relieved that it could tell my story at a time that I truly didn't feel like it. Urine, more blood (not sure it was effective to do blood at the beginning if they just had to do it again so quickly), IV (the nurse in triage got blood but the IV didn't take), and a CT scan. I arrived at 12, was in a room at 1:30, had pain meds by 2:30, and had a diagnosis of Diverticulitis at 4pm. Not bad. I then sat in the ER until almost 9pm as they weren't ready to take me on the floor. I am sure those poor people waiting in the ER would have really liked the bed.

They started me on two IV antibiotics - Cipro and Flagyl. I told them in the ER that I think Flagyl made me sick last time, but it was oral so I wasn't sure if it would make me sick or not. I had Dilaudid for pain and Zofran for nausea. This kept me fairly comfortable but I felt miserable. I was allowed to have ice chips only. No food. No water. I honestly didn't care except for water as my throat was dry. Wednesday, I wasn't better. The pain meds helped, but by the afternoon Wednesday, I was puking. A lot. I didn't have anything in my tummy, so it was just that horrid puking that hurts. Thursday morning, I thought I really might die that day. The pain was horrid. I was puking. The puking made the pain worse. I had a fever. I didn't really feel like the nurses were being very responsive with how miserable i felt. Not really sure what I wanted them to do, but I didn't really feel that they were on top of it. I was too miserable to really tell them. Finally I lost it around 2 pm on Thursday when I was just sick of not getting relief. I named it PukeFest 2014 to make me feel better - it was so bad that it was at least worthy of a name.  I pushed the call button in the middle of another pukefest and nobody answered me on the call thing for what seemed like 10 minutes. It was truly probably 3 or 4 but isn't that too long? Shouldn't they at least ask what you need pretty quickly? I was trying to yell for help. Nobody came. Finally, someone came on the speaker but they couldn't understand me. They sent the nicest two student nurses in to see what was wrong. THANKFULLY they were awesome. They helped get me cleaned up (the cleaning lady had moved the puke bucket and taken my washcloths while I was sleeping), helped me get to the bathroom, changed my sheets, and got me into a chair to see if it would help the pain. They got the nurse and she called to get phenegran to help with the nausea.

FINALLY, I got some relief. At this point, i feel like I started to make a turn of for the better. They switched my antibiotic to Zosyn instead of Flagyl in case it was causing the puking. By Friday, I was still having pain but the pain was better, i wasn't puking, and the fever was down.  The moved me up in the word to clear liquids. Awesome.

The highlight of the day was that we had a final audition for a main stage speaking opportunity and of course it was scheduled for Friday at 4 well before I was in the hospital. Since they were trying to make a final decision and it seemed kind of like it might cloud the picture, we decided to do the audition from the hospital. Travis came to my hospital room, and Morgan was the guard. The hospital nurses were actually super nice about it and made a sign to not disturb me during that time. However, RIGHT before we started, the heart monitor they had me on the whole time went up rapidly to 160, 170, 180, 190! The nurse came running in the room to make sure i was ok. She apologized but said she had to be sure. LOL I guess now I have proof that I get nervous before presenting. :) Then,  my IV started beeping. So, Morgan stood there and pushed the silent button every 2 minutes for the whole presentation. I was so happy when it was over and went ok. You seriously can't make this stuff up. Life as a start up company.

By Saturday, I was doing better. Still having pain, but much better. No fever. No pukefest. They said they didn't want me to go home until I was eating and pooping. Gotta love GI issues. They gave me a soft diet on Saturday, and I tolerated it ok. Sunday, they finally let me go home. I was told to call with fever, pain that wasn't improving, and to see my GI doc in 2 weeks.

All in all, you forget how frustrating it is to be a patient. It is hard because you don't feel well, and then you are out of your entire life routine. Morgan was so nice to spend every night with me since she knows what it is like, and Mike was fantastic and driving her places and bringing us things as well as keeping the rest of the family going. I was so thankful for my family and Carmen, Jen, and Lisa for visiting me and bringing flowers (well and travis for the demo bonding). I will say that if you ever have a friend in the hospital, go visit. I know it is a pain and out of the way and inconvenient and even unpleasant, but it really does mean the world to people when they are stuck there. At least it did to me. Ask if you can bring anything. Lisa brought me diet coke, and it was SO nice to have when they finally said that I could have one.  I guess to sum it up, it really is all about the little things. Compassion, empathy, family, and friendship really do make all the difference in the world.

I kind of haven't really taken this whole diverticulitis thing very seriously. This is technically my fourth attack of it, and it is the third in the last year and a half. They seem to be getting worse with each one, so I guess I need to really get serious and figure this out. I am scared and don't want to ever feel that way again, and they keep using that surgery word which is also very scary.  I have found very little patient story type data on the internet or twitter, so I have decided that I am going to try to write more about it here. Maybe one day it will help someone. I did find a message board that has been helpful already. You can find it here.

Saturday, April 5, 2014

Charging for Medical Records is NOT the Right Thing to DO

Rare disease moms have to stick together. There aren't many people in the world who really understand our lives. So, when you make things difficult for one of us, we rally around each other to help.

Recently, another rare disease mom tried to get her 6 year old's records from the hospital and doctors where she gets seen. Shockingly, she got a $1106 bill! Her daughter was seen by the hospital and doctors, there were fees charged and paid for the services, and now that she wants to understand what happened better and wants to have a record of it for future use, she is charged an extra ONE THOUSAND dollars. 

Another rare disease mom also is struggling with the same hospital for a $600 bill. I was also charged hundreds of dollars to get Morgan's records from this SAME hospital.

Since I work at CareSync, we usually are able to help people with these problems. We help organize their records and give them tools to not only store them but to share them in meaningful ways with family and other doctors. However, every once in a while, we run across situations where healthcare tradition and bureaucracy show the true craziness in healthcare.

Each state can make up their own rules for medical record fees, and HIPAA requires that the patient be given access within 30 days. However, HIPAA allows state rules on the fees. I would argue that charging someone $500, $600, and especially $1106 for their medical record is not really making the records accessible to the patient.

Here is a link to many state fees
Here is something specific to Illinois
Here is a survey by AMIA of several hospitals on what they charge

CareSync has tried to help in these cases, and our Chief Medical Officer even requested the records and even called the hospital himself multiple times to try to get some reasonable outcome. The lowest they would go to was nearly $600 and they will continue to charge for each single visit afterward for an approximate $28 per visit (includes a "handling fee"). 

What other industry do you not get some record of what happened? When my air conditioner broke this year, I got a written account of what happened. When my car needed work, I got a written account of what was needed and what was completed. Every month, I get a phone bill that gives me a record of what calls were made.

I posted this on twitter this morning, and there were quite a few great tweets in support of this. I understand that it is work on the part of the hospital or doctor, but isn't that work part of the fee that is charged the patent and her insurance?

See tweets as a PDF
As you can see, there were quite a few different people posting similar thoughts here. So, what can we do? Any other ideas? How do we solve this for all patients? It is so important for patients to have access to their information.