It is not by chance I am writing this in my bathroom at 12:55 am, it is a sleepless, restless night. We spent the last few days in Cleveland OH at the Cleveland Clinic getting a second opinion on my transplant surgery. Ever since the onset of the possibility I felt strongly that I should get a second look at something so major, hopefully to give the process some certainty……
The words stopped me in my tracks, and still do, “We feel you are too risky to undergo transplant.” We went from afraid we would’t medically qualify, as in not being severe enough to warrant transplant to now being too risky. I know I have been slowing down and symptoms getting worse, I am afraid it all makes sense.
You can imagine what a shock that was when we were really expecting this to just be the rubber stamp to continue the process with Georgetown as we have planned to do. The confirmation yup, replace small and large, remove gallbladder and ok…. But no, of course not, not with me not with this process.
The team acknowledged many things about the small bowel infection that I have had no medical support or understanding on until now. That infection is doing more harm to my body than we know. So the team suggested taking out the diseased small bowel, then rehab, gain strength and weight and then undergo surgery.
I wish i knew more, but won’t until I get a phone call from the Cleveland Clinic team Monday. More to come…… Please send support and well wishes during this important decision making time!! Thank you!!
Now that we have received notification that I am officially listed with UNOS and they are actively looking for organs for me I have A LOT to do to get ready. First on the list, my hair.
While I love having long straight hair in my normal day to day life, it becomes more of a nuisance than a convenience when in the hospital for a long stay. Knowing that I will be in the hospital 3-8 weeks post surgery I need something that dries quickly, that I can’t lay on and pull and that still looks cute.
Let me introduce you to Ana, my AWESOME hair stylist at Hair Cuttery Wilson Yards. You don’t need to go and pay for a fancy salon when you can find someone as talented as Ana in the neighborhood HC.
I figured we would end up doing the regular short bob hair cut my previous stylist preferred. It meant cutting inches off of my hair. And with my straight limp hair it would show every imperfection and I would constantly be trying to get my hair to curl perfectly under. But Ana had a much better solution, a mid-length bob in the front transitioning to a shorter bob in the back. I have to admit when she explained I had a moment of hesitation. But then it just seemed right. So Ana went to work, and inches and inches of my hair started hitting the salon floor.
It has been a couple of weeks and the cut is great, easy to take care of and looks great. It It has the appearance of length in the front but without the length and weight in the back and yet I can still put it in a pony tail. I can’t lay on it and pull my hair when laying in my hospital bed (I got to test this out in my hospital stay this last week). It is wonderful and just what I wanted in a cut! Thank you Ana for taking a potentially stressful and expensive experience and making it great!
Up next on the list of preparation is a tattoo. YUP!! a TATTOO!! So Chicago peeps any recommendations of really talented and precise tattoo artists? Mine will involve crisp text and perfect circles, so while the tattoo is rather simple I need someone that is extremely talented as any imperfection will be obvious. Send me your advise / recommendations. This is my first one, so I have no idea what I am doing!!!
Kind of ironic once you are listed with the most sophisticated organ transplant and donor placement system you await to get your official notification in the good old fashioned mail.
On Jan 10th I received the official letter in the mail, as of Jan 2nd I am listed as a Status 1, awaiting a match for an intestinal transplant!!!! Now the preparation and waiting for the phone to ring begins.
When we met with the Georgetown team they estimated a few months wait. These estimates are highly flexible as the circumstances are completely up to chance. I have a pretty good chance of finding a match. My smaller stature and 39 antibody level means that I have a medium chance to find a good match.
Once the UNOS organization finds me a match a coordinator from Georgetown will give me a call. We will assess the offer and either accept or decline the offer. If we accept I will grab my pre-packed suitcase and head to the airport to catch the first flight to DC. I’ll have about 8 hours to get to the hospital. Once there I will continue to be prepared for the transplant surgery.
One step closer……
Like many people, I am going to be happy to see 2017 end. But I would like to think my situation and reasoning is kinda unique. For those that are close with me, you know that since I had to have my colon removed in Aug 2015 I have never recovered……there were hopes and glints of recovery but it never happened. I am not a very public person and didn’t post to world of Facebook or Twitter anything about the experience in any kind of detail. If you are finding out about this now, my apologies, don’t be offended it is not something I was very open about.
I am happy to see the end of 2017 and the start of 2018 because I finally have hope of a full recovery and a quality of life I miss so much. I have been sustaining myself on IV nutrition at night for 12 hours a day for over 2 years. To go out into the world and pretend that I had it together, that I was ok. In the meantime I was enduring the biggest challenge of my life. I now see the merits and the flaws in being so private and have decided in the next steps to be much more public. As I type that I breathe deeply and tell myself not to totally freak out.
As of Jan 1st 2018 I will be on the list for a full intestinal transplant at Georgetown University. I have not in my recent status of heath and wellbeing been able to share the story with all of you one on one as would have liked. In the upcoming day and weeks I will reach out more, tell my story with pride and ask for help (something I REALLY don’t like doing.)
I have started this blog to help in the communication of my story. Please follow if you are interested / concerned. I will do my best to keep it up, to reach out more as I have a wonderful net work of people and countless contacts that are going to make this process a success. It it going to take support big and small in and in many forms to achieve the outcome we are striving for. Thank you in advance!!! Onward and upward!
Good bye 2017!! Don’t let the door hit ya on the way out!
HELLO 2018!! We are going to do great things this year, you just watch.
We have a lot of catching up to do. Since we have three weeks before I will be placed on the transplant list I’ll take that time to get the blog up to speed on what has happened so far. We will start tomorrow and just go with pertinent topic(s) of the day.
Want to learn about what is an intestinal transplant? Go to the FAQs tab for information and reference links on the technical aspects of my transplant.
This is the post excerpt.
HOLY SHI..NKEY!! Just got word that I am approved for an intestinal transplant at Georgetown. I cannot believe we are at this point. WOW… so here we are approval.
Now all of my thoughts begin to swirl. Where we have been, where we are going even just the shear fact that I am at this point in my life…all unbelieveable.
I look backwards and a see a long, hard, turbulent path. The last 2 years and 4 months a test I never thought I would endure. Looking forward I see the light of celebration after a very dark and difficult recovery. The light is enticing; the dark daunting.