Well here is the post I have been meaning to make. I started writing it several times now, but I think that this is the perfect time to share it. Exactly one year ago today this all set into motion. I never saw it coming and didn’t know how much of an impact it would have on my and my family’s lives. WARNING: This post may contain graphic descriptions.
It’s been one year since I was in the worst pain of my life. (I wrote about it HERE.) It all started with a gallbladder attack, which I was no stranger to. I powered through the pain since my husband was at work and I had a two year old and a nine week old to take care of. Just when it seemed like my pain was easing up, it intensified to something I had never experienced. I was profusely sweating. I couldn’t stop vomiting. I was seeing spots. I felt like I was going to pass out. I was so scared. Dawson was crying but I couldn’t help him. Evie was laughing as I throwing up repetitively.
I started messaging my husband. As the pain got worse, the messages were more frantic. Finally I got through to him and he let work know he had an emergency at home and needed to leave. He worked in another town, so he had at least a 30 minute drive to get home. My mind was racing. Should I call an ambulance? Am I dying? Am I going to have to have emergency surgery?
After what seemed like a lifetime, my husband got home. We had just had our truck repaired and had a rental, so he had to install the car seats before we could leave for the hospital and I attempted to drag myself up to get dressed. Once that was done, he grabbed the kids, and made the long walk down the stairs and to the truck. Being July in Texas, the heat hit me. I wasn’t sure I was going to make it to the truck, but somehow I got there, stopping to throw up multiple times.
Luckily, we live one mile from a hospital. D drove me to the door of the ER and I made it into the doors before I practically collapsed on a bench. I had to fill out a paper that had my information and reason for being there and I could barely scribble out the words between vomiting. I processed through triage and was sent back to the waiting room. I couldn’t tell you how long we were left waiting, but time felt like it stood still. I was vomiting on myself and in agonizing pain. I just wanted it to all stop.
Finally, I got brought back to a room. They ran numerous tests and finally we had an answer as to what was going on: pancreatitis. I was admitted. The next few weeks are a blur of pain. I had several CT scans, an ultrasound, an enormous amount of antibiotics, and countless blood tests. I was released once, but ended up going back a few days later in pain again, this time for another gallbladder attack. All in all, I was in the hospital 14 days. My surgeon wanted to see me in six weeks, to allow the swelling and infection to dissipate, and she wanted to remove my gallbladder.
I went home for the “last” time at the end of June. My parents had arrived a few days after I went to the hospital, so they were still here helping with the kids so my husband could go to work and school. The first few weeks were rough. I was feeling pretty bad. I didn’t have an appetite and little energy. A few times, after eating something, I would get really bad pain and get sick. Just going to the grocery store to pick up a few things wiped me out. My parents stayed as long as they could, but had to get back to California because of my dad’s job. They had stayed a full month at that point.
I was beginning to feel a little better, but no where near normal. Over the next few weeks the persistent pain eased and I was able to stop taking my pain medication. I thought I was doing ok, but I was barely eating. I had little desire to. Out of nowhere I would have bouts of bad pain and a bloating feeling. I also (TMI) was unable to go to the bathroom without laxatives or softeners. I would feel fine for awhile, then, BOOM, I would be in pain again. Finally, my energy levels were improving and I tried to go back to my normal life.
At the beginning of September, Dave’s parents came to visit. I felt pretty good for most of the visit, save for one day of being sick. Shortly after they left, the State Fair started, so the four of us went out there. I remember that by the time we made it there, I was starting to have some pain. I had to sit for a little while and I took a pain pill. Luckily it eased enough for me to be able to walk around and have a nice time. A few weeks later we decided to go again and had a great time. Evie LOVED the fireworks and would ask every night afterwards to see the fireworks while looking out the window.
October rolled around and we just went on with our normal lives. Around the end of the month, the kids and I got up and started our day. I was picking up toys in the living room when I was hit with pain and nausea. After puking my guts out, the pain was increasing. I was so nauseated. I called Dave at work and begged him to come home to take me to the hospital again. He got here and loaded everyone up and I had him drop me off at the ER. I didn’t want the kids in the ER again.
Once I went to triage, I was brought back to a room pretty quickly since my heart rate and blood pressure were not good. They started an iv and did some blood work. Once they got the results, I was given pain medications, zofran, and fluids. I was given oral contrast to drink and sent over to radiology for a CT scan. When the results came back I was told it looked like my pancreatitis was persisting and I had a large pseudocyst. I had fluid collecting in July, from the swelling of my pancreas, but the doctors didn’t seem too concerned about it. Now it appeared that the fluid had changed and possibly contained some blood. I was admitted.
The next day I met with a new doctor. He was a surgical oncologist and had a treatment plan to propose to me. He said that I had severe necrotic damage to my pancreas. Additionally, since the fluid around my pacreas had not resolved on it’s own at that point, it was not going to go away without intervention.He told me that he wanted to do long term gut rest. This would both give my pancreas time to rest and hopefully heal and allow the pseudocyst time to “mature” and develop a solid membrane. To be able to do long term gut rest, I would have to receive nutrition another way. He wanted me to get a peripherally inserted central catheter (or PICC line) and I would get my nutrition in the form of Total Parenteral nutrition (TPN). If that didn’t work, the other alternative was a feeding tube, but that was not the preferred option. After the doing gut rest “weeks to months,” he wanted to repeat the CT scan to see if the cyst had matured enough to be drained (more on that later).
My first concern with this was if I could go home. With two young kids and being a one income family, I couldn’t be in the hospital for weeks or months on end. Luckily, my doctor reassured me that I could do this all from home, mostly on my own. I would have to get home health set up as well as a pharmacy to get my medications delivered to me. I would have a nurse come out once a week to take blood and to change my dressing. The pharmacy would use my blood tests to tweak my TPN formula to my needs and deliver them once a week.
I had the PICC line inserted the day after I talked to my new doctor. It is done in your room. They bring in a big machine and use ultrasound to find the vein in your upper arm.They told me it was best to place it in my dominant arm, so it was inserted into my right arm. The whole proceedure is sterile, complete with do not enter sign, face masks, drapes over me, hair nets, etc. My arm was well numbed so I didn’t feel it. After placement, I had a chest x-ray to ensure it was sitting correctly.
I started on TPN soon after that. Because of the glucose in the mixture and the damage to my pancreas, I had to have my blood sugar monitored and receive insulin shots when needed. I was taught how to give the shots to myself so I could do so at home as well. After they saw I was tolerating the TPN and I got home health set up, I was almost ready to go home. A nurse from home health came to my room to give me an overview of how to use the IV pump at home, and they arranged for a nurse to come to my apartment as soon as I was released to teach me further and get me set up.
I got home and my nurse arrived with lots of supplies, including the pump, saline flushes, heparin flushes, alcohol wipes, gloves, tubing, and a week worth of TPN bags. She did my admission paperwork and walked me through the process that I would have to do every day. I was to be on TPN 24 hours a day (or as close to that as possible). I would have to disconnect the old bag, flush my lines, prep the TPN bag, prime the tubing, and restart the infusion every day . Unfortunately, I got very sick that night and returned to the ER early the next morning. I was admitted (again) for several days. I was mostly dealing with horrible nausea, stomach and nerve pain, and the resulting dehydration from vomiting.
I was released again at the beginning of November. My mother in law was here to help with the kids for a few weeks. After she left, my husband went on medical leave to help me, watch the kids, and take me to my appointments. A few weeks after starting TNP, I developed severe nausea again, this time accompanied with a feeling of pressure on my stomach. Luckily, after a night of vomiting every time I tried to lay down and zofran not working, I had a doctor’s appointment. He believed that the nausea was because my cyst was maturing and putting pressure on my stomach. He gave me a different medication for my nausea and ordered another CT scan.
The new nausea medication worked very well for me, but made me sleepy. Luckily, over time, I became accustomed to the feeling of the pressure and the nausea improved significantly and I no longer needed medication for it.
Being on TPN was a very big adjustment. At first, I subconsciously babied my arm with the PICC, but that was not what you should do. I had horrible neck pains and my muscles were so tensed up. My nurse had to massage out the knots. It would feel like little electric jolts of pain in my neck.Once I got over my fear of hurting my arm, I noticed my pain going away.
Now I’m a super clumsy person. Add in long tubing to the mix and things get interesting. I was constantly getting my line caught on everything, which was not a pleasant experience (and yes, it can be ripped out of your arm). I would get caught on door knobs especially, and occasionally forget I had the backpack and try to walk off without it. Waking up in the middle of the night to go to the bathroom and forgetting I had an iv coming out of my arm was fun.
One of the hardest things about being on TPN was that I was hungry. The TPN did not take away the hunger pangs. My body was getting the nutrients it needed (except for lipids since they wanted to avoid irritating my pancreas), but my stomach wasn’t getting the memo. Over time it became less bothersome, but it was always there. Occasionally I got a sweet “treat,” but it was out of necessity. Since I was on insulin and had to monitor my blood sugar, I had both highs and lows. I always made sure to have something sugary with me because hypoglycemia could hit me without warning.
My dressing could not get wet, so my arm had to be wrapped for every shower. The best method was press and seal wrap and medical tape. The dressing itself was very irritating to my skin. I would develop rashes and wake up subconsciously scratching my arm. Dressing changes were both torture and relief. The PICC site had to be scrubbed down, which burned but also scratched the itch that wouldn’t go away. My nurse tried to change up the positioning of the dressing each week to give some of my skin a break to heal.
I also had to be careful with the position of my arm as certain positions would cause my pump to alarm. I also wasn’t supposed to lift anything heavy (over 5 lbs actually), but with two small kids that was almost impossible. I will admit I had to break that rule many times. I also may have gone bowling using the lightest ball available. My arm ached for days but I had fun.
Going out in public was interesting. I would have people stare at me, touch my line, freak out thinking I was going to trip on my tubing, and ask invasive questions. One stanger in an elevator was shocked that they would “let me go home with that,” and told me that he hoped it wasn’t chemo. I was asked in the checkout lane what was wrong with me.
Coming into late November, I was getting used to the PICC and TPN. I settled into a routine and started feeling better overall. I scheduled my CT scan for right before Thanksgiving to check on my cyst. Right before my appointment, I found out that my insurance denied my CT scan. Over the next TWO months (no joke), it was a fight to get my scan approved. My insurance kept saying that my doctor had to call them and explain why it was needed and my doctor’s office kept assuring that he would call. I was getting no where and my home health nurse (who was awesome) was pulling strings on her end to try to get it approved. FINALLY, in January, we found out that because it was a new year I didn’t need approval to have a scan since it would be the first one of the year.
Around this same time, my parents came out to help me again. This allowed Dave to return to work, which we desperately needed. My dad had recently retired, so they didn’t have to worry about him needing to return to work this time.
I finally had the CT done at the end of January and followed up with my doctor in February. At my appointment I found out that my cyst had matured and that I was going to be referred to a Gastroenterologist to deal with the cyst. I also got the good news that, after months of not eating or drinking, I got the thumbs up to ease back into eating starting with a liquid diet.
I got my appointment set up with the GI end of February and at my appointment he told me how the procedure would go. They would do an endoscopy, specifically an esophagogastroduodenoscopy (EGD) and endoscopic ultrasound (EUS). They would examine the wall of my stomach adjacent to the cyst, which was very large (23cm), and, if they were able to, he would cut a hole into the cyst and insert stents to allow the fluid to drain into my stomach. If they were unable to insert the stents, then I would have to have a more invasive surgery with external drains inserted.
The day of my procedure in March, I was put under general anesthesia and had a breathing tube to help prevent me from aspirating during the procedure. The procedure was pretty quick and I was home in the afternoon. I got to see pictures of the cyst as well as found that my gallbladder was full of stones and should be removed (duh).
The next day, my throat felt raw. It was very painful.I started running a fever, which is not good when you have a PICC line. When my fever wasn’t going away, I went to the ER with my dad and found out I had an infection. They did a CT scan and drew blood cultures from both my arm and my PICC. I was admitted. I ended having a staph infection and was put on IV antibiotics. I had feared my fever was due to my stents, but they were fine. It was determined to be caused by my PICC line. I had to have my original line in my right line removed and a new one inserted in my left arm. This time insertion was more painful because I wasn’t numbed enough. They also did it differently where I didn’t have to have a chest x-ray afterwards. I got to go home after about 4 days, where I continued to give myself IV antibiotics 3 times a day, in addition to TPN, for the next 10 days.
My infection did get worse before it got better. My infection levels went up and I was sick in bed for a few days, but I did avoid another hospital visit. My parents had appointments and such, so they went back to California for a few weeks March-April. While they were gone, I got great news. Because I was able to eat with little to no pain and my cyst was draining, I was finally going to get off of TPN! To ease me off of it, I had one week that I had 12 hour infusions and then I was DONE. I was going to keep my Picc for my upcoming procedures since I have bad veins, but I was having increasing problems flushing the new line, probably due to a clot. I didn’t want to have to have to use cath-flow (basically a clot blaster) again, so because of that, combined with the increased risk of infection, I had my line pulled. Sure enough, after the line was out, my nurse showed me the blood clot that was in the end of it!
My last week of TPN
After my parents returned mid April, I had an appointment with my surgeon and we arranged my gallbladder removal in May. I had another CT scan for my GI doctor and arranged another endoscopy, this time to remove my stents, just 2 weeks after my gallbladder surgery. It was a long few weeks in May! I had surgery right after my son’s first birthday, an IUD inserted that same week, and the stents removed soon after. My parents also had to go home 2 days after my stent removal.
So here we are in July! I healed from my surgery pretty well. I had my surgery followup and was told I didn’t have to go back unless I had any issues. So far, mostly good. I have had 2 scary instances where it felt like I was having a gallbladder attack but I don’t HAVE a gallbladder anymore. I have to follow up with my GI in September to ensure that my cyst hasn’t recurred, and I will bring that up with him then. In the time being, I have been watching what I eat and trying to make changes, like eating a more/mostly plant based diet (basically vegan). It is difficult, I’m not going to lie. I am still working on it. I have been experiencing some pain since starting TPN (my nurse told me that the pure vitamins and minerals in the TPN can go to your joints) mostly in my knees and tail bone. I am trying out yoga and stretching to help relieve it.
Beyond a few negatives, I feel GREAT! I feel better than I have felt since I had pancreatitis, if not before that. I know this post is overly negative, but I feel like this chapter of my life has a happy ending. I am thankful that the treatments, although taxing physically, mentally and financially, worked. I am thankful that I can live normally again and that I got more time to spend with my family. Thinking back on it all, it’s almost like watching someone else go through it, if that makes sense. It feels like it happened yesterday and a lifetime ago at the same time. A year ago today I wasn’t sure I was going to make it through this. Today, I am proud to say that I did.