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. Ahh....no more foley for me.

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

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. 

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 :)

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. http://www.tiggernut.com/Diverticulitis_Sources.html

Here is the great message board I found.
http://www.topix.com/forum/health/diverticulitis

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

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.

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?