I remember when I first got sick, and it was the night before my gastric emptying study. I was up really late looking at what could possibly come from a failed GES and the top concern was gastroparesis. Me being the worry wart I am, I looked deeper into gastroparesis, I stayed up watching "my journey with GP" videos crying because I was scared. Me and mom just tried to sum it up to the fact that the disease is extremely rare, so that brought a lot of relief to think about. So fast forward, it's the next day and I'm at baptist, I go in and I'm watching the screen of the x-ray for the 5 hour span that I'm there. I went in pretty confident, but as the picture on the screen stayed the same every time I went in for a scan I started to become beside myself.. I walked out bummed, the rest of the day bummed. At that point all I could do is wait for my doctor to call with the results..So now it's the next morning and I got woke up from a phone call at 8:24 in the morning from my GI (I always go by the "no news is good news" saying, but at this point the doc is calling 20 minutes after the office opened so my hearts already skipping beats) I pick up and she tells me that my stomach has delayed emptying, meaning I did in fact just get diagnosed with what was the most terrifying fear in my head at that moment. In that moment I can't even explain the pain, the hopelessness, the loneliness and everything in between that I had been feeling all at once.. I was googling and googling cases of GP and crying scared of having such extreme weight loss as I was seeing some of these men and women have. I was mortified of getting a feeding tube, I was mortified of getting a PICC line placed, I was mortified of being admitted in hospitals as frequently as I was reading others had been. I had thoughts of, "how am I going to date? No guy is going to want to be caught dead with a girl on a feeding tube." And "how will I even be able to go into public with a tube hanging from my face?" But life went on no matter how extremely hard and exhausting it was, I was in and out of the hospital 2-3 times a week from pain and nausea, doctors didn't know how to react nor treat me. Their lack of knowledge caused them to simply pump me with fluids, nausea meds and pain meds and send me on my way. During all this my GI doctor had me on and off lots of meds that were believed to treat gastroparesis and not a single one of these meds had worked. Eventually my liver had started to fail, I was then placed in the hospital and admitted for a week. This was the most miserable week of my life but I honestly believe it may have saved my life.. during this week I had lots of tests done lots of blood work and lots of nurses trying to force me to hold food down, with failure every time. At that point they realized that with my stomach acting as it was I wasn't able to gain the nutrients I need to survive, I then had a PICC line placed (which was one of many fears I had bc of this horrible disease) before the procedure began my nurse prayed with me, we prayed for my disgusting horrible disease to be cured and we prayed that my procedure go smoothly. It was a short procedure but the pain caused it to feel as though it took hours, I instantly started to feel relief after the procedure was over and I started getting TPN (total parental nutrition). At this point the doctors and nurses were still trying to shove food down my throat and even sitting in the room with me as I ate to mark off the possibility of an eating disorder. After about a day of being closely monitored my GI had come to the hospital and told me that my best chance would be to have an NJ/NG tube (nasal jejounem/ nasal gastric) placed, which was one of my worst fears at that point, but I agreed. That night the nurses had come in to place my tube, it was a messy process but it was done. Almost immediately I had started getting tube feed and was on constant feed. After a few days color began to come back to me and my liver returned to normal. I was released and sent home to be put on homebound along with getting home health nurses to visit me once a day sometimes even twice a day. I was still on continuous feed which I slowly and slowly began to only be able to tolerate less and less, this disease is a progressive disease and I felt as though it was getting worse and worse and was now slowly reaching a severe case. I then went to my GI follow up appointment where my GI had taken me off of home health.. a couple days later I was vomiting again which then caused my tube to come out of place. I got ahold of my GI who then made an appointment to place my tube entirely through my intestines, after he told me he had scheduled that, he had then said that he would start referring me to Mayo Clinic's around the US and as he began to hang up the phone he informed me that he was no longer going to be caring for me and my case... I went back to being in the hospital 2-3 times a week, ER doctors and nurses had known my face when I came in at this point. Fast forward to now, (4 weeks later) I am weaker, I am thinner and I'm way more exhausted than when this disease first took me as it's victim. I am still in and out of the hospital 2-3 times a week, I now tolerate one tube feed a day due to the severity of my disease now.. Today I had an appointment with a replacement GI and I loved her, she was an answered prayer as soon as she walked in with how attentive she was to me and my problem, she listened to my cares and concerns and was in no rush. She even started a referral today for doctor Abel who I've been wanting to see for months now. She also sent him a request to place a gastric pacemaker in my abdomen, the waiting list for this doctor is extremely long, but is still an answered prayer.. When my journey began I was 205 pounds, today at this moment I am 120 pounds. I lose 5-7 pounds on a good week, on a bad week I lose up to 10 pounds. I'm still in the hospital frequently. I'm currently still homebound, and at this moment I don't care about going in public with my tube and a guys impression of me and my tube is the least of my concerns. I've lost a lot of friends because not many people stand by when things get tough, but I'd really like to thank my bestfriend and my second family for driving 2 hours to see me and being there for me with emotional support..I'm really grateful for those who have stuck around with me and EXTREMELY grateful for my mom during this whole process and can't thank her enough for her support mentally and physically.. And for everyone who has been taking my sickness and hospital admissions as an "inconvenience" to you and your time, I'm sorry that your mindset and personality is the way it is. I'm alive and I'm happy, because I've come close to hitting 6ft a few times now and I can't let myself be anything but positive and grateful.
We greatly thank you and appreciate your prayers tremendously!!!
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