Tuesday, September 16, 2014

Long Overdue Update

My healthcare adventure over the summer was a much longer and rougher experience than I had anticipated. Although I still have a way to go, I am finally back working and feeling much better. I ended up with a seroma and an infection, and I had several courses of antibiotics and getting the area drained. So much fun.  I still have pain in the area daily, and I still have a huge hard lump above my belly button. They will see about whether it needs to be removed in October, but we are giving it time to absorb first. I also still have some GI issues, especially with certain foods. I eat a pretty bland diet at this point to avoid problems. I do still get some pain on the lower left side, but it is mild and tolerable. I hope that this eases over time. It seems to mainly be when my GI is not happy in general.

My family was amazing during my recovery. I couldn't have done it without their help and patience. Morgan was truly a rock star nurse, and I know she will do a great job at it when she graduates and gets a healthcare job. Mike was so great at driving Morgan places and helping so much with errands and the house. He took over cat litter duty (still has it!) because of my weight lifting restrictions. My parents let me hang with them at their beautiful house that has an elevator! That made it nice to not have to worry about stairs. It also has the best view ever, so I got to sit in my anti-gravity chair and marvel in the beauty. My walks progressed from the hospital hallway to the short outside walks. I am not ready to start building up my walking program and maybe even some light swimming.

Unfortunately, I got a sinus infection or cold or something a week or so ago, and i was sneezing and sneezing and sneezing, and that caused some issues with pain and swelling. However, it is better now. I managed to travel to California for Stanford Medicine X with Morgan and then to TEDMed after that. It was a very long week, and I was so tired each day. I definitely need to work on getting my strength back so I can meet the social demand of these conferences. :) I got to attend my big brother's 50th birthday (old man now), and Tracy through a fantastic party for him. Unfortunately, I forgot that i hadn't been drinking for months, and I was wasted by the end of the night (sorry Mike and Tracy).

Of course, I second guessed my decision of having the surgery, the method of the surgery, and everything else that I could second guess when I was stuck on my cough feeling miserable. However, I already feel so much better than I did before the surgery, so I am feeling much better about it all now. :)

Advice for anyone having colon surgery like this:

1. Be prepared to be down for the count for weeks. When they say 8 weeks, they mean it. They aren't joking  :) If you get lucky and have a less invasive surgery than I did, you may be fine in less time. If so, you will enjoy it. If not, you will be prepared.
2. Do not be afraid to demand care. I probably should have gone to the ER when I first started having trouble, and I wish that I had gone earlier when the incision was having so many issues. I felt like such a pain to the office so many times, especially when i knew all the nurses and what was happening in their lives. :) It eventually got easier, and it is important.
3. GET YOUR RECORDS. Before the surgery, read all reports and visit notes. Make a summary or use CareSync to gather the records and get the summary for you.
4. Track your meds and pain levels. You can do this on paper or using tools like the CareSync app. Having this information tracked will definitely help you explain details that are easy to forget.
5. Tell your family exactly what you need. Don't be vague and expect them to know what to do.
6. Give yourself time to rest. If you rush, then it doesn't do anyone any good.
7. Investigate options for time off from your employer. There may be short term disability or Family Medical Leave Act policies that will help you. 

Tuesday, July 1, 2014

ER Visit - Bummer

Today, my incision looked wider, deeper, more red, and had much more fluid coming from it than previously. We decided that it was time to go to the ER. I have had mixed experiences with the Hilton Head Emergency Room in the past, so I was not thrilled to be going there. We have been there at least once a year in the last 5 years for Morgan, but I was a new patient to them.

Morgan drove me because she is the one who has been packing and dressing the open incision since Friday and could best tell the doctor how it has changed. My dad and Mike have been helping her, but they haven't been consistently looking at it each day. I was also having more pain than I was, so I mainly wanted to be sure that there wasn't something more serious than originally believed by my surgeon. Since we were visiting my parents for my recovery out of state, I didn't think it was efficient to keep calling the surgeon who couldn't see it live or do any testing.

We arrived at the ER and had to fill out a form. Nobody was seeming to pay attention, but eventually the security guard who quickly had Morgan sign in as a visitor got someone's attention. She told me to sit in the waiting room. There was a family there who was waiting for a family member who was already in the back, a man waiting to be seen, and us. Meanwhile, a man came in with a neck brace, and ankle wrap, in a wheelchair, and with crutches on his lap. He was taking all of the ER staff's attention as they couldn't figure out why he was in the ER when he was seen in the Savannah ER a few days before. They were all trying to speak Spanish to figure out why he wasn't at a spine doctor instead of the ER and then the man kept saying that he had a lawyer and the lawyer said he didn't need to pay. The one ER staff member said, "We aren't worried about your paying. We are just trying to figure out what you are doing here. " Classic.

A lady came to give me my license back and asked about my insurance card. I had forgotten it was still in my hospital bag, so I asked if I could fax it from my phone to her. She stood there amazed - literally jaw open and said, well yes if you can fax it that is great.

After about 10 minutes, I was called to triage. The triage room is really just a desk in the middle of the registration area. It certainly isn't private as everyone in the registration area (4 people when I was there) could hear every word. I am giggling because the insurance card lady is telling everyone that I can fax my card and that it is coming through. Only in healthcare can people be that exited about a fax, but Caresync came through for me in a big way.

The triage nurse is trying to remember questions and is writing them all on a paper towel. Seriously. She gets the general idea - surgery, leaking, opened, packing twice a day, started antibiotic, not getting better, and she had my history from CareSync that I had also faxed. Then, after about 8 -10 mins of this, another triage nurse who was not nearly as friendly comes to take over. She starts entering the paper towel info into the computer. She is clearly not happy that i had surgery at one hospital and that I am now seeking care at a different hospital. I keep telling her that my surgeon said it was fine to come here to recover at my parents where I would have more help than at the busy home I live in.  Finally, they take me back and I get changed into a gown.

Before anyone else comes in, the ER doc comes in and he is super on top of it. Very friendly and concerned. He tells me that he is worried that I have an abscess and that he is even more worried that one of his surgeons may not be willing to work on me since my surgery was done by a different surgeon in Tampa. He says he is ordering a CT scan so we can see what is going on but he is super worried about the quantity of fluid and how deep the wound is.

I get the CT and they say it won't be more than an hour. This was at 4:30. Around 7 when I still hadn't gotten the CT results, I asked if I could take a pain pill. They said I could either do that or get something that would work faster through the IV. I choose IV since it was in and fast. Unfortunately, it then took 405 minutes for the nurse to get it, so I am not sure it was really faster.  The US was playing soccer and I think the game may have slowed down care a little.  He gave me Dilaudid and Zofran which helped a lot. It still took a long time to get the results which was apparently due to the outsourced radiologist company that they use. FINALLY we got it, and he said he was surprised that there wasn't an abscess and that he thinks we can continue packing and dressing 2 - 3 times a day until the fluid reduced. He also said to be sure to take the antibiotic (it was only day 2 of it at this point). He cleaned the wound very well and repacked it. He said to be a little less aggressive when packing if we could.

I was very pleased with the doctor and felt he was very caring. He even asked if my pain medicine was working for me and asked if I needed something else. Thoughtful. I told him it was working well, but that I am trying to get by taking less of it. He said to take it as i need it and that he was glad it was helping.

Morgan was picked up by my mom at some point and my dad was with me for the rest of the time. He drove me home, and I was thankful to my whole family for wanting to help.  I am not sure how people manage health issues without family as awesome as mine. I am also not sure how I would hav managed some of these issues without CareSync. I have tracked all my meds, including pain meds, antibiotics, advil, stool softeners, and nausea meds. It makes it so easy to see how much pain I am having and when I can take something else.

Hopefully, I will get better from here on out. I am relieved to know that it isn't an abscess.

Monday, June 30, 2014

Incision Problems

The weekend went ok with the packing, except that is is still leaking a LOT. It is soaking through the packing and my clothes 2 - 3 times a day. I called the doc today because I am still having significant pain, and I am worried about how much it is still draining so much.

The nurse called back, and she said he is in surgery until the afternoon and that she would talk to him and call back. Her name is Jennifer, and I am starting to feel like we are old friends since I have talked to her almost every day recently. She called back later and said that he wants to call in an antibiotic. I checked with CVS later and saw that it was Flagyl and Cipro that he called in. I have an intolerance to Flagyl (they tell me it doesn't count as an allergy but it makes me sick). I called my BFF Jennifer back again, and she talked to him about it. He then called in Augmentin instead.

Because I am out of state, they called it to my Floridalocal pharmacy, and then I called the pharmacy here in SC. They transferred it to the local one here in SC so that we could pick it up. I am not sure what happened, but somehow it was transferred to the other CVS on the island, so my mom had to go to two places. :(

Morgan packed my wound with 5 sheets of dressing and mounds of tape, and it held up MUCH better. Of course, it seems like I have a diaper on my belly, but it is better than it leaking.

Tonight, my wound was bleeding some. I hope that is not a bad sign. Hopefully, it will not be bleeding tomorrow. 

Friday, June 27, 2014

Open Incision and Packing

This morning, we arrived at the doctor's office right at 8:15. Dr. Tran came to see me at 8:35. He sliced open my incision and drained a ton of nasty fluid. He wanted Morgan and I to look at it but it was gross. He said it was like a geyser. Lovely.

He showed Morgan how to pack my wound and said it needs to be packed twice a day. He gave us a bottle of the wound packing stuff, some long Qtip with a stick on one end, and some gauze. Here is some basic instruction.

Basically, she uses the stick to shove the packing in and to lay it over itself until the wound is full. Then, she lays a bunch of gauze dressing pads on it with the first one fitting inside the wound. Then, she tapes it all up. My dad and Katie have been her main assistants with Mike taking her place with the packing one night. It is a team effort and it is my least favorite time of the day. GROSS and it hurts. He said it would probably take two weeks. Fun, Fun, Fun.

We did make the trip to Hilton Head ok. Morgan and Katie took turns driving. I took two pain pills and a Valium and it made the trip tolerable. I was fairly loopy though and the girls laughed at me at times.

My parents just built an amazing new house in Hilton Head, and it has an elevator which makes it easier for me to move around. It also has an amazing deck with a beautiful view, so I can sit there and at least be in beautiful surroundings while recovering. I am also enjoying getting to spend some time with my family even though I can't do the beach or swimming. :( 

Thursday, June 26, 2014

YUCK, Leaking from my incision

Today, I woke up and my pajamas were soaking wet. I got very nervous. After trying to figure out what was happening, it continued to leak nasty yellow-red stuff. I called the doctor, and the nurse said he was in surgery and couldn't see me until tomorrow morning. It was a disgusting day of leaking through anything I could put there. Gauze dressing pads would be saturated in a couple of hours. I finally resorted to wads of toilet paper on top of the gauze dressing. The toilet paper would at least absorb more and keep it from leaking so quickly.

My incision is also burning, and I feel like I have a fever even though the thermometer insists that I don't. :)

Morgan had to take a test at school, so I rode with her driving and was going to sit in the parking lot waiting for her. Travis was nice and came to pick me up for some lunch and to drop off an application packet that needed to be mailed.  He has a range rover car, and I couldn't get in it. The security guard at the school asked if I needed help. I was so embarrassed, but I did finally get in. Then, Travis figured out that he could pull the car by a curb and that worked much better.  :)

I had to change the dressing twice during the night and I was aggravated that the surgeon couldn't see me before the next day because we are leaving Friday morning to go to my parents house for me to recover there for 2 weeks. We also had to pick Katie up at UF where she had been to a journalism camp. But, they promised to get me in and out quickly starting at 8:15 Friday morning.

I am ready to get tho leaking to stop. It is really nasty.

Tuesday, June 24, 2014


Today, the doctor came around 8 and said I was good to go home.

Discharge meds

  1. Percocet 7.5mg/325
  2. Colace stool softener
  3. Zofran
  1. Start on soft diet
  2. Low fiber
  3. Work up to harder to digest things like steak or high fiber food over the next 8 weeks
  1. Walk as tolerated
  2. No lifting anything over 5 - 10 lbs
  3. Rest, Rest, Rest
  4. Return to work in 6-8 weeks
  5. Can shower now
  6. Can go in the pool two weeks after surgery (like to cool off and sit in the pool)
  1. Keep it clean and dry
  2. Call if it gets red to the touch or has pussy discharge
  3. Some slight moisture is ok
It was great to get home. Sophie was happy to see me. I missed her so. :) I had a pretty good first day home and walked in the cup-de-sac a little outside. I did still have to take my 2 pain pills every 4-5 hours though and the pain was pretty intense at times. 

Monday, June 23, 2014

Monday (Post Op Day 7)

The doc came in this morning and said that I could either go home today or tomorrow. I was still on the PCA pump and pushing it quite a bit, and I was still having more trouble walking than I had before. He decided to do a CBC to make sure that everything was ok, and then we would see how I was tolerating the pain medicine. He prescribed Percocet 5/325 - 2 tablets every 4 hours. I took two doses of that but I was still having pain of a 5 or 6 when walking.

We decided to stay one more night to make sure my pain was controlled and that I was going to be able to sleep ok. He increased my dosage to Percocet 7.5/325 and it was better walking around that night. I also had a little more dinner with some soup and a grilled cheese sandwich. I slept pretty well on the pain medicine which was another worry I had. I was very glad to have stayed the night. I felt so much more comfortable going home after the dosage change and the good night of sleep.

Mike came and did a run of stuff back to the house so that we didn't have so much left. Ready to go home tomorrow!

Sunday, June 22, 2014

Sunday (Post Op Day 6)

The doc came in around 9, and he said all looked good. I got moved from "full" liquids instead of just "clear"ones. He said that I can even move to soft food in the evening if that is going ok.

As I moved around this morning, I was excited because my gas factory was in full gear. It means I am healing ok. However, to my surprise, my first post-surgery BM decided to come! Yes, Poop! And quite a lot of it. It was very liquid.

When I was trying to clean up, I twisted too hard to the left and I really hurt my side. My pain immediately went to a 9/10. I was in tears and thought I had pulled something inside. I called the nurse and she told me that I probably didn't tear anything. I pushed greenie a lot and tried to calm down.  Finally, it got better, but it still was pretty difficult when walking. The day before I was walking 2 and 3 laps at a time, and now I was struggling to do a single lap. It was a little scary and depressing, but my pain was controlled with greenie. I just hated to push it as often as I was.

Mike came with a refresh of home supplies, and we just took it easy today.

The pet therapy people came again. This time it was a big dog. He was sweet.

It was around this time that the nurse brought me a diet pepsi. AHHHHHHHHHHHH

Morgan and I watched the X Men movie. It really isn't my kind of movie, but it was pretty good anyway. :)

I was feeling better around dinner, so I ordered a grilled cheese sandwich. It was so good. I felt like I was inching toward the land of the living again.

Saturday, June 21, 2014

Saturday (Post Op Day 5)

FINALLY!!!! At 4:05 am, I finally farted. Blare the trumpets and put out the news release. AND BRING ON THE POPSICLE!!!!

I immediately called the nurse. She says she will tell the doc when he comes and he will "probably" start me on clear liquids. I would like to see him try to wait. :) I happily counted my "gas" until he arrived around 9. I was beaming ear to ear and told him. I guess he hears this all the time or something because he wasn't nearly as excited as I was. :)

He started me on clear liquids, said the incision looked good. Keep walking. Stay in pain control. If I get nauseated, back off because the body just might not be quite ready yet.

I called the nurse for a popsicle. "We don't carry popsicles," the nurse says. What???? I have never heard of a hospital without popsicles. Oh well. They had lemon italian ice. That and shasta sprite like drinks. Yum. It was way better than ice chips. I savored every minute of my throat feeling the cold liquid. I went slowly but I repeated it until I didn't feel so freeing thirsty.  Glorious!

Mike and Morgan brought me back a banana popsicle when they came. Awwwww..... it was SO good. Otherwise, I walked and pushed greenie and ate some broth and italian ices.

Banu, Sarathy, and Anish came by today, and Anish brought me a get well picture. :)
Thanks Anish! i talk to Banu so much at work that it is so weird to not have talked. She had me in stitches over her C Section story where she refused to get out of bed to walk. Hysterical. Sarathy educated us on the World Cup as we hadn't been following it as much as we should.

 Pain was pretty controlled. Walking was awesome. I was told that it was 14 laps to make a mile, so i decided I was going to go a mile.  I was at 11 laps around 7:30pm.

Unfortunately, around 8 pm, i started having really bad pain.  Like the worst pain in days. I was in tears. I guess what happened is that I didn't push my friend greenie and I walked so much. The combination wasn't good. So, it took a while I resting and pushing greenie before I finally relaxed. I then stayed on greenie for a while to be sure. I decided the mile was less important than feeling well, so I am happy with my 11/14th of a mile.

Friday, June 20, 2014

Friday (Post Op Day 4)

Well, I made it to Friday. Still on gas watch. Doc says he still doesn't hear any bowel sounds. He said that I might have an ileum (a non-mechanical bowel obstruction) but that some people just take longer than others. He said he doesn't want to rush into investigating and wants to give it a little more time.  He says that my incision looks good and to keep walking and using my spirometer.

Mike came and took Morgan to horse, and I knew they needed some time away. So, they went back to the house and Morgan took a shower at home, played with Sophie, lounged around, etc. I took the opportunity to get some walking in alone. The staff at St. Joseph's was so fantastic. I had one nice lady whose name I cannot remember who would cheer for me when I went by the nursing desk. She was awesome. I will say that I definitely did at least a few extra laps over the days just to have her cheer and smile. Very encouraging. It wasn't just her though. Everyone was awesome. The guy Mark who cleaned the rooms was AMAZINGLY friendly and polite. He would always say hi if he saw me walking and ask how many laps I was up to for that day. He was very into the World Cup, so we talked about that some. Other techs and nurses would stop me and make conversation. I really felt like I was in an environment that was there to help me, and I think that is a big piece of healing. Once I got out of the ICU, I didn't have a single nurse or tech who I didn't think was awesome.

This was a video Morgan took of me during the day.

After work, Vera, Sarah, and Melissa came by the this amazing picture! We use Zoom at work for video conferencing, and it puts everyone in a square on the screen. They all got on a video conference and took a screen shot to print out for me. So, now, i have my work friends right there smiling at me. There are some noticeable people who didn't make the picture, and of course, there is my step-son Chris who didn't get his video camera to work in time so it says You Cam instead of his picture. :) This picture is awesome and I really, really love it. The hospital staff are amazed by it too. The did a lap with me pushing my IV pump around the floor to get the whole experience. :) It was so nice to see them.

Then, Travis came behind them and did another lap with me. He brought some "I found an error in my medical record" buttons. I didn't bring them out though because I hadn't found an error at St. Joseph's (yet anyway!), and I didn't want to make the natives hostile :)

Friends visiting makes the time go so much faster and the laps so much shorter. :)

Signing off. Very, very, very, very sick of ice chips. SO THIRSTY. Want flavor. Especially a popsicle. A banana one. Or a grape one.  One day.

Thursday, June 19, 2014

Thursday (Post Op 3)

Mike came and took Morgan to horse this morning and Carmen came by to see me. It was nice to see her. I decided to step up my game walking and I worked up to TWO laps by the end of the day. I think I did 8 laps. It was nice.

It is about this point that you are either really lucky like I am to have fantastic support or you are really wishing that you had a different set of family and friends. :) Thankfully, I had two partners in helping me.

Mike has been the perfect support system for Morgan and I. He has come back and forth with whatever we needed whether that was jolly ranchers and Starbucks for Morgan each day or soft toilet paper and home supplies for me. He didn't complain about coming back and forth, and whenever I needed a leg moved, a pillow adjusted, a pole pushed, or a hand to get up, he was cheerfully there. It is really hard for me to ask for help, and he acted like he wanted to do it which made it so much easier for me to ask. I know it is tiring to work all day, drive kids around, remember to bring things back and forth, and then come and cheerfully help in not so fun ways.  Thank you Mike!!!

On my other hand, Morgan has been there staying with me each and every night. It is so nice to not have to worry about waking up alone in the hospital or to be looney in those late night or early morning hours. We all know that Morgan values her sleep, but it meant SO much to me that she was eager to help even in the middle of the night or (gasp) the early morning. She would even ask me if she heard me shuffling around or grumbling in the middle of the night if I needed help. But, I think most of all, Morgan provided laughter. She has a way of being silly and fun and entertaining that just lightens the mood. I really appreciated her "Momit" calls to which I would answer "Yes, Momit."

I can't emphasize how important it is to help friends and family if they have something happens and have to go to the hospital. GO VISIT THEM. Even if it is for 20 minutes. It really means a lot. If you can't visit, make silly videos and send them. Or text them something funny every day or send them something cheery for their room. It is really hard being in the hospital, and it is really a time where true friends completely make the entire experience. I feel very blessed.

On the gas front, there isn't any. My bowels don't have movement. The doc said that some people just take longer than others.

I am starting to get tired of ice chips. Some water would be good. Just water even. But even when the ice chips melt, I am being good and getting fresh chips. I have been tempted to just slam down the water, but I haven't.

I have my method of getting in and out of the bed down pat now. I put the back of the bed up all the way and then I flatten the legs part out by lowering it all the way. Then, I swing my legs around and push up with my arm at the same time. I can get back in bed alone now too but I really like it when Morgan or Mike straighten out the pad, move the pillows, pull the sheet out of the way, grab my second leg as I get in (kind of reverse I sit with my left leg on the bed and start to lean back while they put my right leg onto the bed for me and I lean back. Then, I use the arm rails to brace myself to scoot my butt back so that I am higher in the bed. I put the knees up and Morgan or Mike add a pillow under my knee).

I am still using quite a bit of greenie (my nickname for the green PCA button), but I am much more awake and I am really tolerating the pain pretty well by now with the PCA assisting me.

I had a nice treat today in that the pet therapy people came in. When Morgan is in the hospital, she always loves the pet therapy, so I was excited. I didn't get to have them sit with me on the bed like they do with Morgan, but I think that was probably so that they didn't accidentally hurt by belly. Bella was a Spaniel and she was very cute. Her mom brought her into the room in a stroller. Too funny.

Wednesday, June 18, 2014

Wednesday (Post Op 2)

Today was pretty good. I finally could stay awake long enough to have a conversation. I was still sleepy and slept a lot of the day, but I felt like I was coming back. No bowel sounds yet so only ice chips are allowed. I think I forgot to mention that I started getting ice chips yesterday afternoon. They are heaven after nothing. I was sooooo thirsty. I am still soooo thirsty. I am getting an IV with fluids, but I am always thirsty. I am so thankful to have a toothbrush that I can brush my teeth and spit it out and water to just swish around and ice chips. I also used lip balm a lot to moisten my lips.

Today, Lisa and Mark came to see me. It was so nice to catch up with them. Morgan had horse, so Mike took her and they escaped hospital land for a while. Lisa and Mark did a lap with me around the floor. By the end of the day, I got up to doing a whole lap (the hall had short cuts where you could do about half the loop, 2/3, 3/4 or all of it).

Lisa brought me this beautiful bracelet that says Partner's in Crime on the charm. It is so awesome, and I can't wait to ditch the hospital bracelet for this one :) Thank you Lisa!

I am not having any problems peeing, butt he elusive gas will not come. I have heard a LOT of fart jokes by now. Never thought I would spend so much time trying to fart. :)

Tuesday, June 17, 2014

Surgery Day (and Tuesday - Post Op Day One)

I had to be at the hospital by 7:15 for an 8:45 surgery, so I got up at 6 to take a quick shower. I took one last night with my antibacterial soap and everything, but I decided that I might want another one since it will be a while before a good shower takes place.

Sophie and Tally were like, "What? Why are you guys doing such weird things? Are we having surgery?"

We assured them that they can sleep, and we left Morgan and Chris sleeping to head off to the hospital. Mike had a previously scheduled business trip for today, so he will be leaving after I get out of surgery (yes, he offered to stay and yes I told him to go and that Morgan will take good care of me for two days in the hospital) So, we drove different cars to get there so that I could leave all my stuff in the car because the hospital said not to bring everything in until after surgery when you are in your final room.

The hospital is pretty on the outside. Let's hope it is good on the inside.

The hospital, St. Joseph's Hospital North, gave a great first impression. They had a desk where you check in. They asked me to go into admitting while Mike got a badge printed. In admitting, I was shown to a kiosk that had be checked in and ready to go in 2 minutes.
This also printed my allergy bracelet and my patient bracelet. Once I had that on, a nice gentleman escorted us upstairs to the second floor. He showed us how the elevators required a badge swipe before they will move. So far, I was loving the tech.

I was taken back to the pre-op area and they left Mike there and told him he could come back in a while. They made me LEAVE MY PHONE WITH HIM. I was not quite prepared for that early of a departure, and my heart skipped a beat. Amazing how attached we can become to little pieces of electronics. At that moment, I was receiving best wishes and prayer notifications from my dear friends, and it was comforting. However, I somehow managed to pry it out of my little hands and give it to Mike. :)

She asked me some questions and verified the procedure (colon resection and hernia repair with mesh). They had me scrub my whole body with these wipe things. She said it was because i would be getting mesh. I got in a gown and a warm blanket, and then they started my IV. I was apparently ready to bleed and made quite a mess. She put the IV in the weirdest spot to me - under my wrist. It was very difficult to put my hand anywhere that was comfortable, but it seemed to flow ok. 

The anesthesiologist came and asked about my past anesthesia experiences. I told him that I haven't ever had any trouble except that I do tend to wake up a little mean sometimes. He said that he has something extra he can give me at the end to help with that. 

Carmen and Jen were there with me and Mike until I went back. It was so nice to have them telling jokes and making me laugh. Then, I went back and was wheeled into a room. They said they were putting me to sleep and I was out.

The next thing I remember was that I was drowning. And Mike was there for some reason. Why was Mike there? He was supposed to be gone on a trip. And why was I drawing again? and OMG my belly hurt. My eyes had sand flying in them. 

The nurses started to tell me that my oxygen dipped into the 70's and that they were having a hard time getting enough CO2 out of my system,. So they had this CPAP like machine on me. It was completely miserable and DRY. I was already dry and coughing from anesthesia, but this thing made it worse. And I wanted to take it off to cough but they wouldn't let me. And I couldn't stay awake. And the nurses were kind of a little bitchy that I wasn't staying awake and kept making some snide comments like I didn't know. Like, shocker, there she goes again. Asleep. And they would say things to my family that didn't sound very nice. Now I might just have been sensitive at the moment, but all in all it was terrifying and extremely frustrating.

I was in ICU for all of Monday night and until Tuesday afternoon. I slept in tiny slices, and they kept asking me questions that they couldn't hear through the dumb mask. I kept asking to take it off to get a sip of water or to wash my mouth out or to have some ice chips or anything. I did get to swish my mouth out a coupe of times, but I was told, "Don't think that you are going to do this every hour or something." Since I am writing this later, I can tell you that I LOVED my nurses at St. Joseph's Hospital - except the only one I really remember in ICU. Morgan and I dubbed her the evil nurse. I was so happy to get away from her and to get to a new room.
Even on Tuesday, I was pretty out of it. I fell asleep in the  middle of conversations and I was in a lot of pain. I pushed the morphine button a lot. We named it greenie since a little light came on that was green to tell you when you could get the morphine. Greenie quickly became my friend. 
Travis came to visit on Tuesday, and he brought me flowers and a Product Manager Stay Calm shirt.

 I loved them. It was great to see a friendly face.  I wasn't allowed to walk at all until Tuesday when I was allowed to do a short walk in the hallway. It was certainly no marathon, but I felt victorious.

I did get my foley catheter out this afternoon. It was great, but the rule is that you have 6 ish hours to pee or they have to put it back. I was panicking around hour 5, but then the magical moment came. more foley for me.

Sunday, June 15, 2014

Prep Day - Surgery Tomorrow!

Since April 22nd, I have been feeling pretty rough and finally scheduled surgery a little over a week ago. I can't believe that tomorrow is actually the day. I am scared, but I am also so ready to get this taken care of so that I am not in pain. I have also been so very worried that my bowel was going to perforate before I made it to surgery, and the surgeon telling me that he had 3 recent cases that perforated before they made it didn't help my nerves. :)

So, last night at midnight, I switched over to "clear" liquids only. Apparently coffee and diet coke count as clear liquids which I don't understand, but I did have a diet coke late last night but none today.

Before colon surgery, you have to do a bowel prep similar to when you have a colonoscopy. For my colonoscopy in December, I had to take Ducolax tablets and drink miralax in 64 ounces of gatorade. It was disgusting and it made me so very nauseated. My surgeon gave me a fairly new bowel prep called Prepopik. It is SO much better than the traditional kind. It is two pouches of powder that you mix with 5 ounces of cold water each time. Then, you just drink whatever "clear" liquids you want and that is it! While I am pretty sure that no bowel prep is ever a fun event, this has been very tolerable.

I spent $145 at Publix today getting supplies - clear liquids, Jello, popsicles, italian ice and things for when I get home like pudding and ice cream. I got Morgan some snacks for the hospital and some other things like face wipes and such to hopefully not feel so disgusting while i am there.

Here are pictures of the kit and instructions.

Here is me mixing the first batch at 12:00.

Here is my drinking the first batch (Proof that it isn't that horrible)

 I will admit that right after this was taken, I did get a bit of an aftertaste that made me gag a little. But I think I just wasn't expecting it. It was kind of like when you take a big swig of a liquor and all the sudden it kind of has a backlash at the end. It was still easy and tasted pretty much like lemonade.

I then had to drink 40 ounces of "Clear" liquids over the next 5 hours. Because I am an overachiever, I had that completed within an hour. :) I had water and diet cream soda in a can. I love cream soda so I figured that would be my treat of the day.

By 12:52, I was already spending a lot of time in the bathroom. It was pretty constant until around 4 when I got a little break.

I did my 6 pm dose and for some reason I could feel the liquid turning warm while i was stirring it. I added two ice cubes to it as I had read that it is nasty if it isn't cold. It actually was much easier with the ice cubes and didn't even have the weird after taste.  Drinking 5 ounces of a lemonade tasting drink is nothing. Easy Peasy.

I did start having some popsicles and white grape juice around 5. I was feeling a little puny I guess because i hadn't had any calories. It really helped, so i have tried to have something with calories pretty often since then.

I am supposed to do a shower with antibacterial soap tonight or tomorrow. I was thinking I would do it in the morning so I would be ultra clean before going in. I know after being in the hospital bed for a few days makes you feel disgusting, so hopefully starting with a good shower will help :)

I am not sure that my prep has done all the work it needs to do yet, but I hope that it will before the morning. I am leaving the house at 6:45 because I am supposed to be there at 7:15. My surgery is scheduled for 8:45.

See you tomorrow! I hope I am going to be able to sleep. 1

Saturday, June 14, 2014

Today's Mission - Update Advance Directives

It may not be the most exciting goal for a Saturday, but my goal for today was to wrap up some loose ends for work, help celebrate Father's Day early for Mike since I won't be able to tomorrow, watch Morgan ride Riley, and to update my Advance Directives before surgery.

This morning, I got up early and took Morgan to ride Riley. I love watching her ride him. She looks so free and seems to have so much fun.

After that I rested for a long time and worked on wrapping up some things for work before my surgery. It is stressful leaving things open and worrying about what will happen. I feel better now that I got a lot of those things finished. I did have to take pain medicine as I was really not feeling well. I had the same issue yesterday which makes me really glad that I am scheduled for Monday. I have this fear of it perforating before I can get to surgery especially since the doctor said the last three he scheduled had perforated before he got them on the table.

Mike opened his father's day presents and we talked about my Advance Directives. We haven't had that conversation in a long time. I wrote out a new form and made sure to put all the details down. I do not want to live like a vegetable or be unable to enjoy my family. In those cases, I do not want heroic measures. I have to find two witnesses who are not my medical surrogate or a blood relative, so i guess I can do it at the hospital when I get there or get a neighbor to do it tomorrow. I really think that we should be more open and talk about these things when we have the choice. Why is it so taboo to express our wishes? I guess I am really crossing the line talking about colons AND advanc directives. I mainly want to be sure that my family knows my wishes so that they aren't burdened with making decisions that might cause guilt. Hopefully, they won't need it for a long time, but I feel better knowing it is there.

We then went to a dinner for Father's Day since i can't eat tomorrow. Mike even got a free bottle of steak sauce. :)  It was a nice relaxing day. I am glad I got to spend it with Mike and Morgan.

Tomorrow is PREP DAY. I am using a new type of prep so hopefully it won't be too bad. 

Thursday, June 12, 2014

My Search for A Surgeon

Since I have had 5 attacks of Diverticulitis with 2 in the past month and 4 in the past year and a half, the doctors said I need to have part of my colon removed. I do not want it to perforate and have to get an emergency surgery that results in a colostomy bag.

I have always had a pretty practical opinion of looking for doctors and always felt like it was good to research but then if you didn't like them, you could just find a new one. Well, with surgeons, it is a bit different. You only get to pick them once and then it is out of your hands.

Since I talk to people about being an engaged patient, I decided this was a good exercise to practice my skills. I asked my doctor for recommendations, and I also asked physician friends and other friends who they recommended. I quickly decided that there was another problem. In Tampa, it appears that most of the surgeons only go to one hospital. So, I might like the doctor but not the hospital or the other way around. For example, our dear friend and colleague Debbie died in the hospital 2 years ago. Her bed was rusted in the hospital, and I did not feel that they gave her the best care they could have. I really did not want that hospital even though I was assured by the first surgeon that they had done millions of dollars of renovations that made it much better.

So, I searched for the recommended doctors and I also searched for surgeons as well as colorectal surgeons. Healthgrades seemed to have the best information on the doctors and the hospitals, but the information didn't really speak to me.

For example, here is one of the doctors I spoke to.
First, his experience was good in that he was board certified and the procedure I am having is listed.

Then, it lists review from patients. As you can see the ratings are pretty good, but there are only 20 of them. More disappointing for me is there were no "amazon" style reviews where patients just told their story in their words. 

Then, I could look at the hospital for colon surgery. Not the greatest mortality. :(

So I repeated this process for each doctor and I saw 4 surgeons in total. I had all of my records thanks to CareSync, and I could share with them my Health Timeline that had a brief summary of all 5 of my diverticulitis attacks as well. I also had the CT images and a second opinion comparison read of 3 of the recent scans. I felt so confident that they had the story and it was so nice to watch them process it and comment on how nice the summary was.

The first one said he would do it robotically but he couldn't fit me in until July 15th (remember there is a risk of perforation due to my recent events so this was a LONG time to hear in May).

The second one said that he does them open where they slice you long ways down your belly and he said that he didn't think he would be the best person to do the surgery.  

The third one said that he would do it hand assisted laparoscopically because of the time under anesthesia and that he can feel the colon better. He was very patient and answered all of my questions. He told me how many he had done and what his error rate is for leaks (only 1 in the last 200) without me even having to ask. I like that this was important to him.

The fourth one said he would do it all robotically. He seemed insulted that i spoke to four doctors and said that it really didn't need a second opinion and that I needed the surgery. I didn't want to tell him that I wasn't getting an opinion on whether to have it but who to have do it.  He is probably a fantastic doctor and was actually the one I had planned to go with before meeting them, but then I just didn't really like his answers about error rates and such.

So, my surgery is scheduled for June 16th. I have to do the prep on the 15th, and my pre-op testing on the 14th. I was excited to know that there is a new kind of prep where you drink a packet in 5oz of fluid twice during the day and otherwise you just drink clear liquids. Sounds SOOO much better than the Dulcolax and Miralax I had before colonoscopy.

As I have been reading blogs and message boards, I haven't found a site that really summarizes the whole process from the beginning. I decided that even though it is nasty colon stuff, I should be that person. I have really wanted to read someone's experience from the beginning to the end. I hope that this helps at least someone :)

Monday, May 5, 2014

Excellent Resources for Diverticulitis

Patients really are the best. Of course, doctors are important and necessary for treatment. However, as I have learned from our journey with Morgan and my recent healthcare experiences, patients really do have invaluable information to help other patients. I have read thousands of posts now by patients with diverticulitis. Some in their 20's, others around my age, and some in their 60's. The stories are all very similar. At least half of them are confused over what they are supposed to do. A large percentage of them are worried that their doctor isn't taking them seriously or isn't up to current research on diverticulitis.

For example, there have been several studies that say that corn, nuts, and seeds don't have anything to do with diverticulitis. Most doctors still tell patients that is what causes it. Having said that, many patients on this message board feel that these items may be a trigger for them. But I think the point is that what happens seems to be very specific to each patient. What triggers it for one patient does not trigger it for another.

Last fall, there were at least two studies that said that lack of fiber and constipation did NOT have a higher rate of diverticulitis and that too much fiber may actually CAUSE diverticulitis. Yet, I was just discharged from the hospital and told to do the low fiber/low residue diet for a few weeks and then to add as much fiber as I could tolerate to my diet. Many people on the message board seem to indicate that too much fiber is bad for them and causes flares. Again, it seems to be individual based.

ALL of the patients who have had multiple attacks are frustrated and willing to do just about anything to get their life back. There are many posts saying that they are surprised at how little is know about this disease. It seems that the current standard to have surgery is after 2 attacks, but now there are studies that show that four attacks is a number associated with better outcomes.

How do these patients know all of this information? It appears that the doctors are either not aware, dismiss the studies, or choose not to share all the information with their patients. Patients are motivated. They are in pain. They are frustrated. They miss work. They can't take care of their family. You can hear the anxiety and fear in the posts. So, while having to rest to get better, they read. They discover. They share with each other.

Here is a FANTASTIC site that I found put together by a patient.

Here is the great message board I found.

Do you know of other great resources? Please share if you do.

Sunday, May 4, 2014

Why Getting Your Records and Understanding Them Is So Important

If you have been following my Diverticulitis journey through healthcare, I have an important message. Please be sure that you get your medical records and read them. Nobody is more likely to catch errors than you or your family. It is your body, your history, and it is much more likely that something abnormal will jump out at you. This is one of the main reasons we started CareSync. it was so difficult for me to get all of Morgan's medical information and then to have access to share it in a meaningful way was very time consuming, costly, and difficult. A binder was the most effective thing I found before CareSync, but that is extremely inefficient.

So, my CT report had a significant error in it. As you know, I was hospitalized for 5 days for diverticulitis, but this is what the report said.

"CT scan does not show mild focal wall thickening and surrounding mesenteric edematous changes within the very proximal rectosigmoid consistent with acute diverticulitis."

It goes on to say that everything else was normal except small kidney stones in my right kidney (shocker. I seem to always have at least one kidney stone).

Does anyone see the word that was a typo? I will give you a hint. It is not a medical word. Still don't see it? It is the word NOT. It says it does NOT show changes consistent with acute diverticulitis. I contacted the hospital when I saw the report thanks to Dr. Mihale and CareSync Medical Group.

I was going through my mail from yesterday, and I got a letter from my primary care doctor. It said,

"We received your CT scan of your abdomen and pelvis from Florida Hospital Wesley Chapel the other day, and Dr. Yousef found some kidney stones. He would like you to come in for follow-up. Please call us to schedule an appointment."

Now, I was lucky in this case that I was actually admitted to the hospital and got a lot more information over the course of 5 days, but imagine that I had this test and went home from the ER. My primary care doctor would never have even questioned the CT report. Imagine looking at that report a year from now. Would anyone remember or believe that it was an error at that time?

At CareSync, we have found that about 34%of patients have reported finding errors in their medical record when CareSync gets them and puts them into a format that is easy to read.  I have found that in the QA process for CareSync, it is MUCH easier for me to spot an error in a member of my family quickly than it is for QA to check data back and forth on fake patients we use for testing. I have realized through this process that doctors are looking at data like our QA look at our fake patients. The data requires a lot of study to catch errors. It is also kind of like when you write a paper and don't see the errors because you are so familiar with what you wrote. As a patient, we can be the best editors and error catchers that exist.

Please be sure to get your medical records. Of course, I highly recommend letting CareSync do the work for you, but if you don't want to use CareSync, then go to your doctor or hospital and request the records yourself. Read them. Look for things that might be wrong. It really is important.

Saturday, May 3, 2014

What is Reasonable Service to Expect?

My healthcare struggles continued this week. I was dicharged from the hospital on Sunday night (at 8pm - kind of silly that it too until almost 6pm for my doctor to even show up to see me on Sunday, btu that is another story). By Wednesday, I was having worse pain than when i was discharged. I was assuming the antibiotics weren't working. Considering they keep saying that I need to be careful or I will have to have surgery, I am being careful and cautious. I do not want to have part of my colon removed unless I absolutely have to do so.

So, I called my doctor's office at 8am on Wednesday morning and left a message with whoever answered the phone. As a bit of background, I have been seeing this GI doctor since December of 2012 and this is my third diverticulitis attack that he has treated. She took a message and said he would call back. By noon, I was crying in pain and very nauseated. I called back and spoke to the same person who informed me that it might be tomorrow before he called back. I reiterated to her that I was feeling worse, just got out of the hospital, and I that I really needed to talk to him or someone from his office who might be covering. She said that she would TRY to get him to call me that afternoon but it might be the next morning.

I continued feeling badly Wednesday night. Thursday at 1pm, I still hadn't heard anything so I called back. She says, "Oh, he hasn't gotten to his messages from yesterday yet but he should get back to you today." I asked her if I could just come get seen. She said no, he would have him call me. So at 5:30pm, SHE calls me back - not the doctor. She says that he is going to call in pain medicine. I didn't need pain medicine - i have that. I wanted something to, ummm, you know actually make me feel better. I told her that I had 5 days if IV antibiotics and was feeling better, and that after 4 days of Augmenting, it was getting worse. She says, and I am seriously quoting her, "Umm, well I am not really sure how long it takes to get better from diverticulitis." Kind of scary that they have this person calling people from a GI office. I insisted on talking to the doctor because I really think the antibiotic isn't working.

He comes on and acts like he doesn't even know who I am. I reminder him that I just got out of the hospital and that I am on Augmentin. He asks me if there was a reason I am on that and not Flagyl. I told him that it made me very ill in the hospital. He asks if I want to try Cipro. I am really not feeling confident in his abilities at this point. I say yes. He calls it in. Hopefully, this will work, but I am definitely searching for a new GI doc.

I ask friends for a good recommendation for a GI doc in Tampa. The earliest appointment I could get was June 9th. Not sure I really want to wait 6 weeks so I will keep looking. Anyone else have recommendations of either a good GI doc?

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. 

Wednesday, January 22, 2014

I am a Patient and I Need to be Heard

Today was a monumental day for me. Morgan is in the hospital again for aseptic meningitis that she got from getting the IVIG treatments that help her Juvenile Dermatomyositis. It is frustrating because it is the treatment that helps her that also puts her at risk for the painful and serious condition of aseptic meningitis.

Anyone who knows Morgan knows that she is NOT a morning person (she comes by this naturally!), and she really is not the most pleasant person in the early morning. So, here she is in the hospital with a severe headache, and she is having trouble sleeping. She has a hard time going to sleep at night and then once she wakes up, she has a hard time going back to sleep (and this is WITH morphine).

As her hospital is a teaching hospital, there are medical students and residents and attending docs and her consulting specialists. Morgan was ranting about how they come in early which is not good for her sleep, and they don't come in together. Then, they go in the hall to talk about her and then they ask me to come to the hall to talk about her. So, she was voicing her frustrations, and I grabbed my handy iphone as it felt like a star was being born. Morgan finally hit a point in her trials as a patient where she has had enough.

Here is the video that was created.

Morgan sharing her frustrations

She is so very right. Why don't they consider the patient and what their preferences are? Couldn't they at least see the kids who wake up early first and then see the ones who don't wake up as early? Couldn't they coordinate their visits to try to come at one time? Today, she had two medical students come at two different times. Then, she had a resident. Then, she had the attending, and then the first specialist. Really? That is the best we can do for someone who is struggling with severe headaches? I am pretty sure that rest is probably MORE important than the medications they are giving her.

Next, she starts with the part that really made my heart proud. She said, 

"I am a patient, and I need to be heard." 

What a powerful statement. We talked a lot about her rheumatologist, Dr. Nickeson, who doesn't come to see her when she is sleeping or at least he tries to come later. He also sees her once a month while she is in the hospital for treatment instead of forcing us to drive an hour each way to also see him in his office. That is listening to the patient and putting the patient at the center.

I shared her video with a group of people who believe in participatory medicine where patients are empowered, equipped, enabled, and and engaged. Their responses were so heartwarming, that I read each of them to Morgan as they came in. I also shared the video with parents of other JM kids, and I heard over and over, "We feel that way too." I realized that Morgan doesn't believe in the "old way" of doing it. 

Tonight, we got an email from a physician who told a 13 year old boy who has to go into the hospital a few times a year about Morgan's video. He said, "She get's it." And then the best part was that he said, 

"If they want to examine me or draw blood, they're gonna have to watch this first."

I hope that Morgan continues to find her voice to tell it like it should be in healthcare. It is time for healthcare to change. The patient really needs to be at the center of healthcare, and it should work the way THEY want it to work.

Morgan, I love you, and I am so proud of you. I hope tomorrow is the day that you feel better. 

Tuesday, January 14, 2014

Patient Preferences Are Important!

Morgan got her monthly infusions today. We ran into some interesting pushback from the IV nurse.

Since Morgan has been getting these infusions for over 3 years now,  she knows what works and what doesn't. She is pretty clear on the matter.

They always draw labs from the IV site when they start the IV, but at least 80% of the time, the samples have hemolyzed and they have to come stick her again in the morning at 5am (she is NOT a morning person). So this time, she told me that she was going to ask them if she can just have labs drawn separately in the beginning instead of having them done from the IV. I told her that if that is what she wants, then she should ask. As you all know, she is pretty shy. I didn't think she would actually do it, and I thought she was going to look at me to get me to ask them when they came in.

The IV nurse came in, and she asked Morgan if she had a location preference. Morgan said she prefers her hand. The nurse is looking and she says, "I would prefer to go here" and she pointed to the underneath part of her arm. Morgan said, "No. I would prefer it in my hand." I was so proud of her. She was nice and polite but she looked her in the eye and told her what she wanted. The nurse put it in her hand.

Then Morgan told her that she didn't want labs drawn from the IV and would just rather get them from a lab stick. The IV nurse was all hot and bothered by it and kept insisting that she could make it work. She said something at least 6 times that seemed like intimidation tactics to me. Morgan held steady and not only held to what she wanted, but she also tried to educate the nurse. She said that it actually hurts worse when they do it through the IV because they have to push and pull on it, and when they do it for the lab it is quick and doesn't hurt.

After they were finished, the IV nurse went to find Morgan's regular nurse and went on and on in the hallway about how she REFUSED to let her draw labs from the IV. I was appalled as Morgan was so very nice and polite while asking what she wanted.

Patients have a right to have things done in the way that meets their preferences. Go Morgan Go!