chronic illnessfaith

Life Changes: When A Trip To The Hospital Changes Your Life

Life With Chronic Illness: When A Trip To The Hospital Changes Your Life

As someone with chronic illness, I have been in the hospital more times than I can count on both of my hands but this last visit was life changing.

It was scary.

Life changing scary.

It all started very early on a Saturday morning. Like many other nights over the past year, I spent the night up sick and vomiting. I have continued to have issues sleeping (which only adds to the ever-present crushing fatigue of chronic illness), my GI system was definitely not a happy camper and I had one heck of a migraine. I was up for hours vomiting. Every time I would take a Zofran, it would immediately be back up along with anything else I tried to put in my body. John would come in routinely to check on me. I was growing weak and I knew I was becoming dehydrated.

I don’t remember anything else until the paramedics were trying to get me out of the bathroom floor.

Apparently, there was a point where I made it back to the bedroom and passed out. John was sleeping in the other room since I was sick so he could get some sleep and for some unknown reason to him at the time, he came into our room to check on me. He walked in to me projectile vomiting while passed out on my back in bed. He rolled me on my side and I continued to throw up but struggled to come to. He managed to get me to the bathroom and called 911. He worked on getting me cleaned up and somewhat alert while waiting on the EMTs to arrive.

The first thing I remember is being over the toilet crying and completely confused by what was happening. I struggled to comprehend the paramedics instructions and had no idea of what had just happened. The next thing I knew, I was in the back of an ambulance on the way to the hospital.

We got to the hospital and after what seemed like an eternity, they got an IV going and fluids and meds on board. It took John awhile to arrive as he had to get Abby situated and clean up the mess I had created. Most of that day was a haze with the exception of feeling like a pin cushion from what seemed like a constant stream of lab techs and nurses trying to draw blood (the initial IV would flush and give fluids but would not give blood). I have the crappiest veins on the planet on a normal day. Add in the dehydration and my veins are practically non-existent. Its not a great feature to have when you live with chronic illness. I would estimate that it took about ten tries before they were able to successfully draw initial labs.

In addition to the dehydration from the incessant vomiting, they were worried about my kidneys as my labs showed abnormalities so they were going to keep me at least overnight.

I was admitted on Saturday and was discharged on Monday (we spent Valentine’s Day in the hospital – how romantic). In that time, I blew through two IVs and became known throughout the hospital as the impossible stick. My arms were bruised badly from hands to shoulders. They were worried I may have aspirated vomit while I was passed out so I was on antibiotics the course of my stay and given nebulizer treatments (thankfully, my lungs stayed clear and there were no signs of infection). they were able to rule out a possible obstruction early on but wanted to do a CT Enterography to check for other issues.

When they sunk the last IV, it was a major struggle and the only way they were able to secure a line was by using a small gauge IV. I wasn’t on constant fluids at that point so it was able to get the job done until they decided to do the CT. They needed a larger gauge in the bend of my arm to run the IV contrast. This was the start of a quest and finding a vein proved as difficult a search as finding the holy grail. I saw I don’t know how many charge nurses followed by ICU nurses before the finally called in two anesthesiologists. Room 443 was hoppin’ place to be.

After the anesthesiologists couldn’t find a vein, it was decided that we needed to give my veins a break and we would just do the CT on an outpatient basis. It was very unlikely it would reveal anything that would need to lengthen my stay and at this point, I was completely on board. I was exhausted and ready to go home. They discharged me at the absolute worse time weather-wise as an ice storm was rolling in but after an icy and heart pounding drive home, I was so beyond glad to be back with my family. Chloe didn’t leave my side for hours. Just like Charlie would have done.

The hospital visit itself wasn’t anything extraordinary but it was what lead up to it that has left a heavy mark not only on my life but on John’s as well.

I think it was God that woke John up and had him check on me at just the right moment but we are both plagued with the thoughts of “what if?” What if he hadn’t walked in when he did? Would I have eventually woke myself up or would I have aspirated and choked and the outcome have gone another way? Would I still be here?

I cannot even begin to imagine what John had to see when he came in the room to find me passed out and vomiting. I cannot imagine the fear that had to be running rampant through his veins. Getting me to a safe place. The 911 call. The clean up. Trying to figure out what to tell Abby. I know that the fear and the nightmares are still there and probably will be for some time. I wish there was something I could say to make it all go away but I know there isn’t.

My fears rest in the unknown. All the things that happened that I have absolutely no memory of. How could I have been so sick but be too weak to know it? To know that there was a great possibility that had John not walked in when he did, he could have found me dead instead of throwing up. Or worse, Abby could have found me. Those are the thoughts that haunt me. I still hold my breath at the sound of a siren. My life is forever changed knowing how quickly things could have gone in a different direction.

Rising Above Adversity & Chronic Illness

As scary as this whole experience was and how much the thoughts still plague my mind, I cannot help but praise God. Praise God for waking John up in time. Praise God that I didn’t end up sicker than I did. Praise God for another day, another minute, another second of life. Praise God for the reminder that life is so, so precious and nothing, absolutely nothing, should be taken for granted. Praise God for another day to share my story and hope that it can touch someone else’s heart and help them know that they are not alone. And praise God that He can continue to make broken moments beautiful, the weak made strong, and scary situations an opportunity to share His grace, love, and mercy.

[bctt tweet=”Praise God that He can continue to make broken moments beautiful, the weak strong & scary situations an opportunity to share His grace”]

It has taken me so long to write this post for two reasons: 1) I wasn’t ready to relive it, and 2) how do you find the words? I wanted to share initially just as an update but it turned into something more. Something much deeper than I had anticipated. This was hard. Really hard. But it helped knowing that you guys are out there supporting me and praying for me. There are no words to describe my gratitude. My cup runneth over.

I want to find a way to mark this moment in my life for the good, not for the scary. I’ve thought that a new tattoo may be the way to go but I’m stuck on what to get. I’ve got so many ideas rolling around in my head. What would you suggest?

 

chronic illness

Another Obstruction: Not Quite The Thanksgiving I’d Hoped For

Another Obstruction: Not Quite The Thanksgiving I Was Hoping For

We had been counting down the days to Thanksgiving. Not just because we were looking forward to the food, time with family, and the shopping (let’s be honest – I love a good deal). We were counting the days because ALL of this was going to be happening at the beach. Yes, the BEACH. With the fight for disability still ongoing at the time and the way my health seemed to tank even lower than we thought possible this past year, we were most definitely vacation-deprived and could not wait to get the heck out of dodge and spend some time away. The fact that this time away was occurring at a place where we could listen to the ocean waves and stick our toes in the sand (albeit cold sand) made it even better.

My parents drove down to our place and then we were all going to drive east together for a week of family and relaxation at their beach condo. I hadn’t been feeling hot but that wasn’t anything new so we worked hard to get everything packed on Sunday night and the plan was to pick Abby up after lunch at school that Monday and to head towards the coast.

Unfortunately, my “normal” kicked up to a higher level of sick that Sunday night. Since I was up sick, John went to sleep with Abby since my parents were in the guest room (that way I can have lights and the TV on as a distraction and he could still get some sleep).  I continued to get worse through the night and my mom ended up getting up to be with me (mother’s love right there – I’m 34 but I still need my mama). It eventually got to a high level that was way too familiar and I knew I was in trouble.

Coffee grounds.

If you have ever had a bowel obstruction, then you will know exactly what I mean.

Instead of heading to the beach at lunchtime on Monday, I was headed to the ER. Thank God He knew where I was headed and He put an amazing team in place when I got there. The nurse landed the IV first try so they were able to get fluids and meds started right away.

My trip to radiology confirmed my fear and what my gut was literally telling me: another small bowel obstruction.

Thankfully, because I knew the signs and know my body, we caught it in the early stages. When they were working on getting me admitted, one of the hospitalists wanted to start a NG tube and even after I shared my previous NG tube nightmare experience, she was adamant that the tube be put in and the fact that I was “scared” shouldn’t be a factor. Fear wasn’t the issue. It was way more than being “scared.” The issue was that there was something anatomically wrong inside me that made inserting a NG tube a problem so I asked to speak with another hospitalist. When I explained the situation to her, she looked at my scans and backed me. She said that forcing the issue and going in blind could cause some major damage so she wanted to hold off to see what the next day’s scans said and if things were getting worse, then she would call in a surgeon.

I felt so strong not only standing up for myself to make sure that I was heard but for also being my own advocate and knowing my body and my medical history well enough to take on a hospitalist that didn’t know my history. I was wearing my “Be A Badass Everyday” awareness bracelet from FJJCreations and I totally felt like I earned my badass status for the day.

AWARENESS-BRACELET

Thankfully, since we were able to catch it so quickly, we were able to clear the obstruction and jumpstart the illeus (a section of bowel that becomes paralyzed) with NPO and meds within three days. I had a couple bouts of really low blood sugar that required quick intervention which were not fun at all so I definitely caught a glimpse of what its like for John to live everyday with diabetes and its not fun. The first time I went from 44 to 248 in under 5 minutes and it was the most miserable feeling ever. Thankfully, they were a bit more careful the next time around.

The bad news is that this obstruction occurred up high near the sight of where my gallbladder was removed meaning adhesions have already started working their way up. My previous obstruction have been lower in the abdomen where the small and large bowel connect. This one was located closer to the junction of the stomach and small bowel (basically, exactly where my gallbladder was located). My adhesions are spreading rapidly considering that surgery was less than four months ago which increases the chances of another bowel obstruction occurring due to adhesions.

The good news is that the doctor that took over my care once I was admitted put me on a new medication (called Relistor) that blocks opioid receptors in the gut that would allow me to keep taking the pain medication I need without having such a dramatic impact on the function of my bowels. It means giving myself a shot in the stomach every day from now until who knows when but it keeps my bowels moving which in turn can lower the chance of a bowel obstruction occurring due to an illeus and has allowed me to actually eat a solid meal every once in a while.

The first shot at home was a little scary since they didn’t give me any kind of training in the hospital (thankfully I’m married to a diabetic so he showed me the ropes) but I can now give myself a shot without wanting to hyperventilate. Another badass point for me!

So while we didn’t get to spend Thanksgiving at the beach like we had planned, I am thankful that I got out of the hospital just in time to enjoy Thanksgiving day at home with my family and thanks to the new medication, I was actually able to enjoy Thanksgiving dinner! Hallelujah!

Point of the story: Living with chronic illness means living boldly and sometimes living boldly means advocating and standing up for yourself even against doctors when the time calls for it. You know your body better than anyone. Trust yourself.

[bctt tweet=”Living with chronic illness means living boldly which can mean standing up for yourself even against doctors.”]

And be thankful. Always.

chronic illness

Putting My Latest Hospital Stay In The Past & Looking Towards The Future: Reclaiming My Hope With Chronic Illness

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Another post, another trip to the hospital.

That’s right folks. Another trip to the hospital. And this one lasted almost a week.

I had my post-op checkup on August 4th and it went fine. Biopsies revealed what we already knew so there were no surprises there. He was surprised that my pain was still at the level it was and that I was still unable to eat. He said we would keep a close eye on it and I went on my way.

Two days later I felt like I had fallen into the seventh circle of hell. I was vomiting or dry heaving non-stop so I called my surgeon’s office. He wasn’t in yet but the nurse said that I could either go straight to the ED or she could get me an appointment that afternoon. Considering I absolutely hate everything about the ED, I opted to stick it out for the appointment. As soon as I got to his office, I went downhill and I went downhill FAST. By the time he got in the room, I was shaking from the pain and vomiting. Unfortunately Abby was with us and she had to witness it which shattered my heart. She was so scared and just held my hand. Of course he sent me straight to the ED, the place I had been trying to avoid in the first place. He didn’t want to go ahead and admit as I could have just been severely dehydrated and needed meds and fluids.

The ER is less than a half mile away so we got there quickly but of all days, the place was code red (meaning it was completely overflowing and they were on the phone calling in more staff when I rolled in).  Thankfully they saw how bad of shape I was in and I got slid through a little faster. A family friend came to pick up Abby and my mom had already planned to come down for the weekend so she just headed straight to the hospital.

Two nurses came in the room to start the IV and I warned them that I had really shoddy veins. They laughed it off and said not to worry, they were good. I hate that response because I know it means they aren’t taking me seriously and are going to half kill me before being able to sink the IV (why won’t they get one of those new devices that helps locate veins?!). I had one on each arm digging around. They would either blow the vein or not be able to stick it. I don’t think I have ever been so close to passing out. I felt my eyes starting to roll back in my head. Then I heard another nurse come in the room. She told the others to back off and she nailed it first try. She had been an army nurse for years and knew where to get people when you need to move quickly. She is most definitely a hero.

They started the fluids and meds and then the most God awful pain I had ever experienced in my life hit (I must have descended down to the 9th circle at that point). Had I know known better, I would have thought I was having a heart attack. I couldn’t breathe it was so intense. They gave me a shot in the shoulder for quick relief and while I usually hate the site of a nurse with a massive needle, at that point I didn’t care. It finally got me stable enough to go to CT. The scan didn’t show any stones or anything that had been left behind from the gallbladder surgery but their was some fluid and inflammation so they were going to admit me for the night for observation and to keep the fluids going.

That one night turned to five. We couldn’t get my pain under control nor could I keep anything down. Even ice chips would make me throw up. Over the course of my stay, they repeated the HIDA scan and an EGD. When my labs came in, it showed that my pancreas enzymes were five times what they should have been so the official diagnosis was pancreatitis. They dropped back down rather quickly but it still didn’t provide answers for everything that was going on. Once I was able to keep liquids down, I was discharged on the 11th with order to see my GI in Charlotte as soon as possible. I was able to see him last Thursday and he is sending me to a pain specialist he works with for a second option on treatment options beside pain medications. Praise Jesus! I have wanted to get away from my current specialist for quite some time but there is a lot that goes into changing clinics without looking like a drug seeker so with him making the referral and notating that we are looking for non-narcotic options, it will cut through a lot of the red tape and keep me safe.

I’m still not able to eat normally (Ensure and milkshakes are my current BFFs) but I am definitely feeling hopeful that change is just around the bend with the referral and the news that I finally having a hearing! My court date for my disability has FINALLY been set so we are in the home stretch of getting the whole ordeal put to rest! I am definitely feeling more energized and ready to take on the world. I read this post by my endosister, Kasanndra, wrote called “Why You Should Be Brave, If Nothing Else” and it was definitely something I needed to read today and maybe you do too. I am ready to put the past behind me, look forward to the future, and reclaim my hope with chronic illness.

I am working at getting back in the swing of things and get back on a regular posting schedule. I’ve also been doing some behind the scenes work to keep things running smoothly and to really put more of myself into the blog. If you have any ideas on what you would like to see happen on the blog or within the community, most definitely leave a comment or shoot me an email! I will be chatting with you again soon!