Help Hope Live for Kirsten Steele

December 4, 2024

I hope everyone had a wonderful Thanksgiving, we had a quiet one due to both Robert and I being sick. We were able to have a quiet dinner here at home and it was really nice. We worked together preparing it and best of all I was able to enjoy it. This Thanksgiivng brought about so many emotions, so thankful my donor made the decision to be an organ donor but sadness that their family is celebrating the first of many holidays without their loved one. It is so bittersweet. I was thankful I was able to truly enjoy the Thanksgiving meal, without getting sick for the first time in many years, thankful for the beautiful family and many sweet friends that have joined us on this journey. It has been a long one and I have forever to go. I also celebrated 8 months this past weekend. I just cannot believe how quickly it has seemed to have passed. I am getting a monthly endoscopy and colonoscopy so that biopsies of my new organs can be taken and monitored very closely for rejection. All of the biopsies thus far have come back just fine. I'm currently on TPN, IV nutrition, to help with issues I have been having with low blood sugars. When I'm on the IV nutrition my blood sugars stay fairly stable but when I'm not on the iv nutrition and just rely on eating I am getting low blood sugars too often. They call it reactive hypoglycemia and I do not get any symptoms until my blood sugars are in the low 50's. Having blood sugars that low can be dangerous, I wear a continuous glucose monitor that alarms for me and for Robert too. This has been helpful especially at night, I often won't hear it alarm, Robert will hear it and wake me up. This whole thing has definitely been a team effort with not just Robert and I but all of you too. Even with small hiccups that have happened along the way I am so thankful for God's plan and how beautiful my story has played out. I couldn't have written the story any more perfect if I had tried and if you know me ypu know I would have tried. ?? God is so good all the time!!

May 10, 2024

Wow, 6 weeks today!! Time has passed so quickly, I just can't believe it's been a month and a half! Healing and recovering have been my focus these last six weeks and things are going well and my Dr's are super happy with my labs and progress. I'm hoping to start outpatient PT and OT so that I can start safely rebuilding my strength and eventually my core exercises. Right now I'm not allowed to do much core wise because I'm still healing. But I'm excited to start doing more.

I know almost every post and each update is super positive, and that is because things are going really well. I want to say that it isn't all rainbows and puppy dog tails everyday. I have hard days, and this week there have been quite a few really hard days. Each week has its struggles but I have always fought this health battle with a positive attitude because when your sick Dr's can only do so much, the other side is you and your attitude! I tell people all the time that your attitude is half the battle. Guess what? When I'm having a tough day you won't see me or really even hear from me, but I can assure you I'm going to get through it and make the best of the next day. You can't live wallowing in self pity, or blame the world for your problems. YOU are your own best advocate, you are responsible for yourself, coordinating Dr's appointments, making sure each Dr knows what the other is doing, making sure that you are getting the best care out there, it all falls on you. Being critically ill becomes a full time job and it's hard because of everything I listed above. I wouldn't have made it to transplant if I hadn't become my own advocate or lived in a state of constant self pity, my attitude and my amazing team of different specialists got me this far. I'm am so thankful for each one of those Doctors, they are truly amazing. And with transplant we got rid of my very sick organs and got super healthy ones, this brings a whole new set of issues and "upkeep" of its own but I am so blessed to be able to take this on. I thank God each day for my transplant, my amazing family and friends for all the support we have received and continue to receive. I can't wait to share how God's hand has been on this entire journey. I hope everyone has a fantastic weekend! Happy Mother's Day to all the moms out there!!

Look for another update next week!