Emily

Day 10 post intestinal transplant. Biopsies are normal & show no signs of rejection. I’m still NPO (nothing to eat or drink by mouth) but I started tube feedings overnight & they’re going really well so far. The plan is to continue increasing feeds every 8 hrs as tolerated, wean down pain meds & hopefully have my NG tube removed tomorrow!! #intestinalfailure #gastroparesis #intestinaltransplant #fyp

Meggie, thank you for teaching me how to live in the “medical gray” & being a beacon of light, not only for me, but so many others. Your life is to be celebrated & although you may not be here physically, you will continue to live on in our hearts & memories. This isn’t goodbye, but see you later 🕊️ #chronicillness #grief #fyp

It’s crazy how much one person can change your life for the better. Each of these items hold great sentiment. I wish we could’ve met in person but our souls will meet somehow, someday #chronicillness #grief #fyp

Day 39 of being listed for a small bowel transplant. There’s a correction I meant to edit in but forgot. I don’t have to be on hold for transplant for the entire duration of antibiotics this time around. We’re hoping I’ll only need another week & ensure that I’m acutely recovered from the infection. It’ll take awhile to regain strength & get back to my previous (or new) baseline, but this is very encouraging news!! I really hope it’s smooth sailing from here & I can be discharged before thanksgiving. Thank you to everyone following my journey & supporting me, near or far 🤍 #chronicillness #intestinalfailure #gastroparesis #intestinaltransplant #hospital #centralline #mrsa #fyp

Day 46 of being listed for a small bowel transplant & I got the call!! Such mixed & bittersweet emotions since my excitement & happiness is someone elses devastating loss. Hopefully one day they can see that this is the greatest gift anyone could ever give… life. If anyone is able to contribute to my COTA fund for reimbursement of transplant related expenses, the link is in my bio. This will help cover expenses related to my family traveling into the city to visit me & food/parking costs for Jonathan as he stays with me in the hospital. Thank you all for following my journey & I hope to update soon ❤️ #intestinalfailure #intestinaltransplant #cota #fyp

Day 9 post intestinal transplant!! I’m elated to have survived everything leading up to transplant, the surgery itself & I’m just so ready to actually live my life again after 6 years of being so sick. I don’t know how to articulate how different I feel, but I’m hopeful that my life is about to change in ways I never thought possible. Thank you for the continued support & I will try to be more consistent with updates but focusing on healing always comes first 🫶🏻 #intestinalfailure #gastroparesis #intestinaltransplant #fyp

Day 22 post intestinal transplant. I forgot to mention they also found another clot in my left common iliac vein. This is where I had surgery that utilized a graft, so I will follow up with my vascular surgeon when recommended by my transplant team. The plan going forward is continuing the anti-rejection med regimen for this week. I will have my next scope on Thursday or Friday to see if there are any improvements. We are holding off on feeds until the rejection is under control & treated. Rejection has caused ulcerations & blunting of the villi (structures responsible for absorption) in the small bowel. As a result, tube feeds will essentially make me worse by increasing my ostomy output too much, leading to dehydration. The villi will grow back once I’m no longer in rejection!! I’m just happy to be feeling better & really hope this time it’s sustained. I’m focusing on the accomplishments & positives such as being able to walk a few feet, sitting up in the chair, bathing with OT, having my pain under control again, etc. Spending the holidays in the hospital doesn’t bother me this year bc this is the ultimate gift anyone could ever give or receive. I asked for intestines for christmas & got them!! I literally don’t want or need anything else (except my hospital retail therapy purchases hehe) 🙈 #intestinalfailure #gastroparesis #mitochondrialdisease #transplant #fyp

I haven’t posted an update bc I’m in rejection & have been feeling absolutely miserable from nausea, vomiting & pain. I’ve attempted feeds 3-4 times now but keep getting hit with setbacks. I’ve been completely bedbound & very weak. We’re continuing to have issues with IV access & more blood clots were found when they tried to place a central line in my neck today. I knew complications would happen & recovery wouldn’t be smooth, I just didn’t think it was going to be this rough 3 weeks out. But I have the best transplant team & I completely trust them with my life. Many admissions are difficult but this is different bc the “reward” at the end of this is hopefully a whole new lease on life. A life not connected to drainage bags, TPN & causing even scarier complications. A life where I can do daily tasks, light exercise & walking the dog without worrying about sweating under my central line dressing. A life that involves enjoying food & socializing more!! Looking back on this past year alone, it’s astonishing how many things changed for the better right before my eyes but I didnt realize it until now. If you’re struggling or having doubts of how a situation is going to play out, trust that it will. Things can & will get better!! My story is just a small example of that. Hang in there, you’ve got this 🤍 #chronicillness #transplant #fyp

I just wanna go back & give her a hug #chronicillness #engagement #hinge #medicaldevices #fyp

I try to remain positive & not complain about the suffering I’ve been going through recently bc receiving an intestinal transplant was what I always referred to as my “christmas miracle.” But I’m only human. I’m allowed to be scared, frustrated & in pain while still feeling grateful & appreciative. And in case anyone is wondering, yes this is a pep talk to myself #intestinalfailure #transplant #fyp

Day 32: listed & waiting for my miracle. I’m hoping this is a short, uncomplicated stay & that my line can be saved. I just wanna go home & continue “nesting” until I get the call. Watching everyone else out & about while you’re couped up is very mentally taxing. But the view is so stunning that it’s all worth it omg #chronicillness #intestinalfailure #transplant #centralline #tpn #fyp

This year I’m incredibly thankful to all my doctors that made discharge happen before right before thanksgiving day. Being home surrounded by my fur babies is where I’m happiest & where true healing happens. I’m thankful for all my friends, family, fiancé & community that has showed me unwavering support. I’m especially thankful to be able to embark on this intestinal transplant journey, which is rare & still a novel type of organ transplant. I’ve developed scary complications as a result of my central line & just praying my call comes soon. Now that would be my christmas miracle #chronicillness #intestinalfailure #gratitude #fyp

I can finally announce that WE’RE ENGAGED!! 💍 The “cotton candy” sunset & our special spot on this hike was just absolutely breathtaking. It has been almost a week & I still can’t believe he’s my FIANCÉ. Despite all the lightheartedness & laughter, once it actually sunk in that we’re engaged, I cried my eyes out because of how loved & beautiful he makes me feel. I used to think I was undeserving but he has always looked at me in a way nobody has before. He has saved me in ways I should’ve never needed to be. It’s true that when you know, you know. There’s nobody I’d want by my side through this scary, unpredictable, exciting, hopeful journey 🤍 #greatfalls #Hiking #dmv #proposal #engaged #fyp