Hey everyone! I know many of you care so deeply about me, and care about my life and my journey, as I do for you! I’ve been trying to figure out a new way to share my journey where people may choose to read about me if they are interested but if not, they don’t have their feeds clogged with my long posts. I’ve also given up social media for the most part, it just wasn’t fitting into my life anymore. I’ve been through complete hell the past 2 years and I’m just now trying to find my way through all of it. I’m sorry to those I’ve lost touch with or have become distant from, this has been the worst time of my life and I just have trouble finding the energy to even talk or text much of the time. I do miss our friendships and I hope over time, I can redeem myself as a good, caring friend again. This also seems like a good simple way to document what I’m going through, because I hope, someday to document my story on a larger scale. Everyone keeps telling me to do it and I’m feeling called to do it, I just am trying to figure out where to start and this is it for now!
As many of you know, I’m approaching my 7 year double lung transplant anniversary in November!! But, many of those years have been wrought with personal loss and complex medical complications. I am so grateful for my team of doctors and providers, across 3 states, who have worked diligently to keep me alive and to help me through some of the worst personal issues I’ve dealt with in my life- usually while hospitalized. Im grateful for my friends and family, who even at the worst of times, when I don’t have much to give, stick by me and make me feel valued. I will always be grateful for my lung donor, a woman in her mid 40s who suffered a brain bleed. She gave me these 7 years when I only had days/weeks to live. I will always consider this a true miracle and I am so grateful to God for finding me deserving of His gift.
This year, 2021 has been amazing highs and many lows as well. Morgan and I are working on our relationship, and I was able to see her graduate from high school June 18- she will be heading to Coastal Carolina University in August. Things are moving in a slow positive direction with her and I appreciate any time we are able to spend together. As you know, my relationship with her is the thing I treasure most in this world, and has truly gotten me this far in my journey. Her journey has also been traumatic and life changing, but in spite of it all she’s thriving and facing the world head on. I won’t say more on this subject, but I will ask for prayers for continued improvement and healing for each of us and for our relationship. ❤️
I have also had many medical issues in 2021- ruptured disc in Jan, neck surgery in Feb, I had a pulmonary embolism after my neck surgery, i also had bacteremia 3-ish times (I can’t remember) - which has equaled 5-ish hospitalizations since January. The infections all ended up starting in my kidneys but because I wasn’t responding to the antibiotics the 2nd time, they removed my port and had to surgically exchange my dialysis catheter to be sure the infections weren’t coming from there. I have also had numerous ureteral stent exchanges. My last hospitalization, I ended up with a short term nephrostomy bag, another stent exchange and because of a bunch of “Issues” I was discharged from the hospital ONLY 3 hours before Morgan’s graduation. Jamie flew in for the graduation and ended up being my lifeline to getting there., along with hospital staff who all worked together to help me get ready. Jamie got a wheelchair and she was my chauffeur for the entire event. I definitely couldn’t have made it without her wheeling me around but she was here and I made it and I was able to keep my promise to Morgan… but timing was a little too close for comfort!
This week, I started training to do home dialysis. I am so excited for the opportunity to do this and I am already feeling like I have more control of this situation. I’m sure I’ll post more about this later, but yesterday I set up the machine and hooked myself up with the nurse only reading me instructions! My schedule is 5 days a week m-f for training which I’m actually loving bc I am on a schedule. My hope is to go back to subbing this fall at least a couple of days a week once I’m actually dialyzing at home which should be in about 4-5 weeks. I have been able to continue working as a tutor with one student.
My next medical hurdle is having my left kidney removed. The timeline for that is maybe early fall as long as I don’t have any more infections. I wanted to be at home doing dialysis before that happens so I don’t have to worry about getting back and forth to the center while I’m healing ❤️🩹…dialysis centers are necessary but they are very chaotic and for me being in the center has sucked the life out of me emotionally and physically.
I’m hoping I can make a trip up north soon for a full exam at UPenn, and a kidney transplant evaluation. I am looking for people who would possibly be interested in donating a kidney. With a kidney, all of this dialysis stuff would go away and I might be able to feel pretty normal again. My leak has stopped, it’s my kidneys and issues related to renal failure that have caused most of my issues the past year. I am not ready for a kidney yet, but within the next 6-8 months, I plan to actively be working through the evaluation process. Mostly, I have to get this infection stuff under control and my team feels the best way to do that is to just remove the kidney. I started the transplant evaluation process at UPenn but with covid and then all of these hospitalizations, I need to be stable before I go through a rigorous transplant evaluation and before I travel. 🙏❤️
If anyone would be interested in donating a kidney or knows someone who might be interested, please contact me privately, I do have a lot of information from UPenn for potential donors! Please share my need as you wish as the more people who know, the more people might say yes! I do feel like a kidney transplant would be the best possible scenario for longevity and quality of life. To be completely honest, my quality of life has sucked since starting dialysis, I hope home dialysis will give me more control and peace.. but it’s still dialysis and still extremely hard and relentless on my body, mind and spirit. 💚
My life has been pretty lonely and depressing this whole year, but as I type this I realize that I still have tons of hope and strength and I will just keep battling these hurdles, because as Morgan said, ‘Mom you have more lives than a cat!”
Please follow and communicate with me here because I rarely login to Facebook anymore. I’m just posting there because I know many of you are still there.
Also, my email is firstname.lastname@example.org if you would like to communicate more privately. I’m learning to love emailing again. I have a lot of time to sit and write while on dialysis 2-3 hours every day.