chronic illness

Another Day, Another Surgery: My Gallbladder Removal Surgery Story

It has been a hot minute since I have blogged last and I am so sorry about that!

During my last post, I shared a little about the health struggles I was currently experiencing. We had the go kart drama on vacation but thankfully there has been no long term effects of that bit of action!

Otherwise, for months, I have just been feeling miserable. Sounds kind of normal for life with chronic illness but this was a level of misery above and beyond anything I had ever experienced. The word misery sounds a little over dramatic but honestly it is the only word that could remotely describe the intensity of what I was feeling. I was staying incredibly nauseous and this wasn’t feeling queasy or a little sick to your stomach. This was hardcore nausea. It even surpassed what I felt after my obstruction. I could not keep anything down and that is if I could even force myself to eat in the first place. If it did stay down, I had horrible, horrible stomach pains. I was constantly feeling weak/faint and I was losing weight at a rapid pace. So of course, my first stop was seeing my gastroenterologist. My primary (and amazing) GI was on sabbatical so I saw the PA and she immediately scheduled me for an EGD with the fill-in doctor for both the current issues and to follow-up on the adenomas that were removed last year to be sure they had no returned.

The EGD did not provide any helpful information. The good news was that the adenomas had not returned so I was super happy about that but the bad news was that we were no closer to finding out why I was so sick. This is where things get crazy.

For the record, had my regular GI not been on sabbatical, things would have progressed much differently. The following drama would have totally been avoided.

Because I was still so sick, I kept pressing the GI office for answers and begin to question if maybe it was my gallbladder that was causing the problem. Dr Fill-in said no and that he thought it was a heart issue so I needed to call my primary care doctor. I found this to be completely out of left field but I set up an appointment with my primary care doctor because I knew this needed to be resolved.

In the meantime, I had a check up with my neurologist and he did the nerve blocks and trigger point injections for my migraines (which hurt like nobody’s business but do make a difference in the occurrence and intensity of my migraines). He was also concerned about the nausea and weight loss and didn’t understand why the Dr Fill-in wasn’t taking it more seriously but when I told my neurologist about my fainting episodes, he did some tests and diagnosed me with orthostatic (postural) hypotension. Basically when I stand up from sitting or laying down my blood pressure can drop as many as 20 points which can result in fainting, dizziness, and feeling weak. Thankfully it can be easily managed. Gold star for solving one problem!

Now for the next.

I had my appointment with my primary care doctor and the first thing they did was an EKG and like we already knew, it came back perfectly normal. After doing an exam and going over some questions, he really thinks the source of my trouble is my gallbladder (even though Dr Fill-in dismissed it). He scheduled me for a HIDA scan to check my gallbladder function and within a week from that visit we had the results: my gallbladder had ZERO function. It wasn’t doing anything except taking up space. I wanted to call up Dr. Fill-in and put him on blast but I didn’t (although you can be sure when I have my appointment with my GI when he gets back from sabbatical he will hear it all).

I was originally scheduled for surgery tomorrow but last Monday, the pain and nausea was so bad that my husband took me to the ER and they decided to do the surgery that night. I had an absolutely amazing medical team from start to finish. God set up everything that night from the nurses to the surgeon on call. He knew what I needed to feel at ease and to be taken care of medically. The thought of surgery doesn’t make me flinch but the thought of the IV scares the crap out of me. The ER nurse got the IV in first try and I didn’t even feel it. . The surgeon and the OR staff were just as amazing. The moment I woke up in recovery, I was in pain but that heavy and miserable nausea I had been feeling for months was immediately gone. I mean I was nauseated from the anesthesia but that heavy, overwhelming feeling was completely erased. Although the scan did not show any stones, when they took my gallbladder out they said it was full of stones so it was a really good call to go ahead and get it out that night.

The bad news of the surgery was that I am full of adhesions. He didn’t take them down for the fear of them coming back worse but he can pretty much guarantee that I will have future obstructions and problems with adhesions. It was one of those things I knew but it hurt having to hear it out loud. He said that the surgery would take away the nausea and the upper-quadrant pain I was feeling from my gallbladder but that I would still deal with considerable abdominal and pelvic pain despite the surgery. His guess was that I would likely have another obstruction within four years. That scares the crap out of me. My obstruction experience was so traumatizing that the thought of reliving it possibly multiple times takes me to a place where I have no words.

The two takeaway points from this are:

1- Trust your gut. I knew something was wrong and I knew that I need to keep pushing until I found the answers. I would not have thought that my primary care doctor that I saw maybe once a year for cold or infection would have been the one to save me but he took the time to listen and he fought for me just as much as I did and I will forever be grateful for that man and what he did for me.

2- Follow your passion. I had let this blog lay dormant and yes, I had good reasons but I allowed my passion to be swallowed up in the yuck I was dealing with and I don’t want to let that happen again. This blog means so much to me. This community has saved me so many times over the years and I want this community to continue so that hopefully it can help save others. Living with chronic illness can be a lonely existence if we let it and I just want this to be a place where, yes, we can commiserate about the sucky parts of chronic illness but we can also find hope, joy, grace, encouragement, and love. I hope its a place where we can find the beauty in the every day.

 

I’m still recovering from surgery but I plan to bring A New Kind of Normal back to life and I am excited about things to come! I want to get back to the roots of spreading hope and sharing my faith but I am also excited about incorporating my love of makeup in a little bit too! Thank you to LucaLogos for the beautiful new design! I hope you guys come along for the ride!

chronic illness

11 Years Ago Today: Finding Purpose For My Pain

11 Years Ago Today: Finding Purpose For My Pain
When I think back to September 16, 2003, I remember two things. First, I remember how anxious and nervous I was about having my first surgery ever. When I was in high school, I took an Anatomy class and the teacher shared an article about a woman who woke up during her surgery but her body didn’t. Mentally she was awake and aware of everything they doing and can feel them inside her body but because her body was still sedated, she had no way of telling the doctors that she was awake. That story scarred me for life. When I woke up in the recovery room, there were all of the nurses buzzing around me that I immediately panicked thinking  I had woken up too early but thankfully, everything had gone smoothly and the nurses were just trying to warm me up to stop the shakiness from the anethesia.

The second thing I remember about September 16, 2003 was sitting on my bed giggling with my mom and talking about wedding plans as I knew John was in the next room asking my dad for my hand in marriage! We had already set a date and I may or may not have already had my dress but knowing it would soon be official was so exciting!

What I wasn’t aware of on September 16, 2003 was how much my life was going to change as the result of this surgery. Thankfully my journey from initial, constant pain to diagnosis was really short. I would say that within 6 weeks of meeting Dr H, she confirmed that I had endometriosis. According to the Center for Endometriosis Care in Atlanta, “in one study, the average time from the onset of symptoms to the surgical diagnosis of endometriosis was 12 years.” TWELVE YEARS. I cannot even begin to imagine!

As I went through college, my periods began to get worse as time went on. I would get terrible cramps, shooting pain down my legs, and awful GI issues. The summer of 2003, it became apparent that something major was going on. I was extremely moody and constantly exhausted. Pain in my lower back became constant just as I was starting my student teaching at a local elementary school teaching K-5 music. I thought that I might have had a UTI or kidney infection so I went to the local doctors office near campus. I had previously seen the PA for things like asthma flare-ups or sinus infections so I was expecting to pee in a cup and be sent home on an antibiotic to clear up an infection but instead I left with a referral to see an ob/gyn. It wasn’t a UTI or kidney infection. As soon as she said “female problem,” I lost it.

God knew what He was doing as Dr H was new in town so I was able to get an appointment quickly to get checked out. Dr H has become my rock the last 11 years. I honestly don’t think I could have made it this far without her. I had my first appointment in early August and on September 17 it was confirmed that I had endometriosis. It was a lot to take in in such a short amount of time but being the geek and researcher that I am, it didn’t take me long to catch up. I was able to find a support group for young women with endometriosis and still maintain friendships with some of the ladies I met in that group. I went on to be the program director of that group which I loved but when I knew it was time to step back from that role, A New Kind of Normal was born soon after.

So many things changed in that 24 hour span. There was joy and sadness with excitement and anxiety. My world was turned upside down but as things started to settle into a new normal, my purpose was revealed. God was going to use my pain for something bigger than I could have ever imagined. He was going to lead my journey of finding purpose for my pain. That purpose is A New Kind of Normal.

 

What comes to mind when you think about your diagnosis? How has that diagnosis changed your life and your purpose?

chronic illness

My Endometriosis-Specific Ultrasound

I promise I had no intuition of dropping off the planet the last two weeks nor did I anticipate not finishing out Blogging for Endometriosis the way I had planned. I have spent so much time beating myself up feeling like there was so much more that needed to get done or that I should have been able to get done. I have looked in the mirror more than once and wanted to put a big L on my forehead. But I am trying to show myself grace. The same grace that I would be offering anyone else who was in the same situation and I am allowing myself to fully accept it.

That said, I do apologize for going AWOL on the last half of endo awareness month! 2014 has most definitely not gotten off to a great start and it seems like the more time that passes, the bigger nosedive my health seems to take. Hopefully all of the recent doctors visits, procedures, and consults will lead to a turn around!

Last week, I had my endometriosis-specific ultrasound. From all of the information that was given to me prior to the ultrasound, this is new technology that is currently only being offered in two locations in the US (here in Charlotte and at the Mayo Clinic in Arizona). This type of ultrasound allows endometriosis lesions and implants to be more easily seen during the ultrasound which can aid in diagnosing and treating endometriosis by not only being a non-invasive way to monitor the endo but also helps provide a guide if surgery is necessary by showing where trouble spots are located. To be able to get a clearer picture of what is going on, this ultrasound requires a bowel prep.

This was all of the information given to me before the ultrasound beforehand. I’m not sure if I had just built everything up so much in my head or what but I was completely let down by the experience. Maybe it was because it was brand new technology or because it is only offered so few places but I just went in with the grand idea of what the ultrasound would look like or how detailed the results would be. Honestly, if I hadn’t been told that this was an endometriosis-specific ultrasound, I wouldn’t have known it was different than any other pelvic ultrasound I have had in my doctors office. There were no large implants seen but smaller implants and scar tissue are still not able to be seen so I felt like we were really no better off than we were when we started. I definitely cried but the doctor reassured me that in no way was my pain being discounted and really validated my feelings and my experience. So far both doctors that I have seen at the Women’s Institute have been great.

After reading the ultrasound results and going over my medical history and ops reports, the team would decide which direction they thought would best to treat my case. If they thought surgery would be the best option, they would call to set me up with Dr S. If they thought an alternative treatment option (such as medication, physical therapy, etc) would be the way to go, they would set me up with Dr M (who did my ultrasound). They called yesterday and I will be seeing Dr S on Friday! I’m both anxious and relieved because I finally feel like we are taking a step toward finding relief. I’m not sure what the game plan or time line is but will definitely keep you updated!

In the meantime, I am prepping for my repeat colonoscopy tomorrow! Including this one, I have done four bowel preps in 6 weeks. Not fun. And because my colonoscopy had to be aborted in February because the prep was ineffective, I get to do a double prep for this one. Awesome. I had to drink 2 bottles of magnesium sulfate this morning and have to drink 4 liters of NuLyte between tonight and tomorrow morning. I want to throw up just thinking about it and I have to start drinking in 15 minutes.  I just keep reminding myself that this time tomorrow it will be all done and I shouldn’t have to do another prep for a long, long time! Keeping all fingers and toes crossed!

Tomorrow’s start time is 12pm so if you happen to glance at the clock around lunch say a prayer or send some vibes!