Cindy's Christmas Miracle, 18 Lakeview Drive (2025)

02/05/2025

Just a post to keep our page alive. The last year has been a roller coaster of hospitalizations, but today Cindy is feeling good. We would like to keep this page alive to share more of the journey when appropriate. Stay tuned…

25/04/2023

Cindy post 4/24/23

I’m home!

At 6am Sunday, I graduated out of the ICU to the Transplant Recovery Floor. And I got a very cherished shower! (My first since Wednesday when I was last at home). If you remember from my transplant recovery, the Transplant ICU has no showers, no toilets. Only commodes (allowing room for 2-nurse support). It’s like camping…indoors. This works well for 99% of the ICU patients who have catheters. Why am I so often that 1%….?
I have never been SO. GIDDY. to be among plumbing again! Hello 6th floor!

There, I continued standard saline with no drink/food and some clearing prep until my pouchoscopy procedure. After waking up from that, I had enough labs consistently in range of normal that I was taken off IV entirely with the goal of 24 hours of eating/drinking on my own and still maintaining normal sodium and creatinine levels. Check and check! I was released today at 1:45pm! While waiting, I caught up family on status and had some very repetitive walks around the ward, did a few PT exercises I’d been remiss on for the last 2-3 weeks, and had a visit from my lovely former liver transplant coordinator Tina!

The pouchoscopy showed inflammation in my small intestine (Crohn’s flare) that needs to be addressed. Short term fix is high doses of prednisone until my gastroenterologist and I come up with the next drug to try to keep my Crohn’s under control. My first 3 months post liver transplant are done. Now it’s time to return focus back to my friends down the digestive trail (while not forgetting Liv). Ugh, it feels like children fighting for my attention. Get ready to see the prednisone “moon face”some of you remember from my high school, college, and UWP (the years of my high prednisone doses)

So here we are on the happiest Monday I’ve had in long time. A little bruised from the pokes, prods, tape and tourniquets…. But happy to be 🏡.
In my own 🛏️.
And full night sleeps 💤.
With my favorite 4 pak👨‍👩‍👧‍👦.
Praise be to Jesus.
❤️

23/04/2023

Post from Cindy 4/21/2023

Sooo. I’m back in Boston. Liv is fine! She is not the problem. It’s my Crohn’s and some “perfect storm” helpers. Here are pictures and of me and my view (one of the best at MGH)

I’ve been working from home full-time for a month and all has been good there. I’ve been having have a rough past few weeks healthwise. I was starting to add more than I could handle yet. I was not admitting to myself, let alone others, that on some days, I hit my energy limit and ANYthing (including basic need stuff) after that moment was wearing me down. Then some unknown thing caused me to detest the thought of food for a week. I always have diarrhea from my Crohn’s but was maybe experiencing a flare, as well. I focused on trying to focus on drinking and forcing down a very small amount of bananas and rice during that time to get some kind of sustenance.

All of this threw me into diving sodium levels, which represents the ratio of sodium to water in our bodies and cells. That sent me to the ER on Wednesday and admittance into MGH-Boston on Thursday.

Getting my sodium ratio back up is a slow and highly monitored process so that my neurological function isn’t compromised. Bloodwork every 3 hours and all in and out monitored closely. I am on the Transplant ICU floor for this process, the same floor I came out onto after my liver transplant surgery. A new liver transplant patient came in late last night. It’s been surreal overhearing explanations to him about things his body will start to experience over the next days/weeks as his now functioning liver starts to rid his body of built up ascites and toxins. I am definitely a fish out of water as a walking, self-functioning person in a sea of people fresh off major surgeries who need help just to move at all. I was standing up brushing my teeth and a nurse rushed in to see if I was ok. An alarm had gone off at the nurse station telling them I was having a seizure 🤣.

My sodium levels started to reach near normal late yesterday, so now the focus is continued rehydration. I was already feeling so much more energetic Friday night as I was sneaking closer and closer to normal. I have a pouchoscopy scheduled today to assess my Crohn’s flare. This is my version of a colonoscopy since I don’t have a colon. Am not sure of my discharge date yet but am hoping in the next day or two…

10/03/2023

Cindy's post 3/9/2023

My most recent appointment was Monday 3/6 so thought it might be time to give an update. "Liv" is continuing to feel cozy in her new digs. My numbers continue to stay "in range", showing that my body is not ready to evict its new tenant. My next appointment isn't for another 10 weeks in May! This is not necessarily typical (if the numbers show risk of rejection, some patients at my stage are still returning to the clinic for weekly or every other weekly appts). I continue to get blood drawn weekly to monitor my levels. Last week I was able to drop from twice weekly labs down to once weekly. Yay!

I just formed a minor bit of Thrush in my mouth due to my good bacteria being killed from my anti-rejection meds allowing the candida take over and have a party. My anti-rejection meds prevent me from fighting its spread. This is treated with a swish mouthwash for a couple weeks. Apparently, this is one of the most common infections post-transplant. Other risks that will continue to be monitored are due to my immunosuppression (infections, food poisoning, cancer). The period of highest immunosuppressed risk is the first 6 months. Only another 3.5 months to go before I'm just regularly immunosuppressed.

One of my meds, prednisone, can cause bone loss. I've dropped down to a lower dose, but have had to take it in the past for Crohn's as well. I just had a bone density test and show signs of some bone loss (osteopenia). Hopefully, my body will start absorbing vitamins/minerals that it has been rejecting for years, to counteract the med so I avoid osteoporosis as long as possible.

Milestones that I've passed: driving, walking more than 30 min daily (I've had a few 10k step days...I'm not fast but am persistent). Also, my brain fog is finally starting to lift. Clear skies are coming!

I am coming up on my 3 months post surgery on 3/20 and will once again return to work. I am ready and I know that it will take time to adjust to the new pace. My department has changed quite a bit since I've been gone.

Up to now, I have been pretty focused on:
- resting (sleep is when our bodies heal)
- walking (the Pikmin Bloom app with its cute little rewards has been helping me get into the daily habit...the app will then be a habit I'll need to break soon). This is a picture of me walking around Fenway. No game, THIS time...
- taking my meds (I have an app that helps me manage this),
- avoiding lifting (this has gotten easier the longer I've avoided it...haha),
- and masking whenever in public.

This time has been a true gift and a breather to allow healing. I haven't taken full advantage of that gift during the last month, but...God has grace. And He reminded me this past week to give Him some time before life fills my calendar again.

I continue to be overwhelmed by the encouraging words, love, prayers, and acts of kindness that have been outpoured over my family. Thank you all, from the bottom of my heart (individual thank you's are coming soon!)

24/01/2023

Let’s hear it for everyday encouragers in our healthcare journey! 📣 This is a picture of Tina, my pre-transplant coordinator since Dec 2020. She kept track of my MELD score (the score used to rate me in the UNOS transplant list every 1-3 months——or every week as my scores got worse). When she found out I got a liver, she was overjoyed and planned to visit me in the hospital (even through I’d stopped being her patient once I got a liver. But due to the holiday week and weekend, and the fact that I hightailed it out of the hospital pretty quickly, she didn’t get to see me.

At my first post op appt in 1/4/23, Tina overheard someone mention “Cynthia” when talking to someone else. She asked, “are you talking about Cindy McAdam?”. They confirmed. She hovered in the hallway and heard my voice as I was getting ready to leave. With eyes beaming and tearing up at the sight of me in technicolor (instead of sepia toned) and looking so much better than the last time she saw me, she asked if she could hug me! It was such celebratory embrace of all we’d been through. She was starting a class with a new group of transplant hopefuls that day. What a roller coaster of a job she must have! Thank you, Tina, for seeing me beyond the numbers and illness and keeping the process personable. I was honored to have you as part of my team!

23/01/2023

Cindy Post 1/23/23
Phew! Got my my labs on time in Maine, dropped mom off 5 hours early for her flight out of Boston and got to my Dr appt w 6 min to spare! Boston roads were clear upon arrival (just a little rain). During our appt, the skies let’s loose a bunch of snow in Boston and we ran into the storm again! We are on our way back home to Maine and the plows are ahead of us so we don’t mind the slow pace.

My appt today (2nd since surgery) was good. “Liv” continues to kick out my toxins with great lab results. This week revealed an abcess on the end of my incision. It was caught early and managed at home with bandaids and neosporin. How did the doctor test it? She literally poked a stick in it. Ouch!

My brain still has some brain fog (I was hoping that would clear instantly). I’m told it can take 6 months for some people to clear the fog. Lucky me. If I don’t remember things you told me in the last 2 years, I blame “Liv’s” predecessor 😳

All else is good so far. My next appt is in 5 weeks!!! And if all continues to go well, in a couple weeks, I may only have to get labs once a week instead of twice!

23/01/2023

Asking for prayers today to get us to Boston safely. My second followup is today and wouldn’t you know there is a snowstorm in Maine! The kiddos are home with a snow day (hopefully they won’t lose power with someone hitting a power line). Mom’s flight is today. We rebooked her to fly from Boston instead of Portland (which is getting 2 feet of snow today).

19/01/2023

Cindy’s post 1/19/2023
I suppose it is time for an update! Jeff took me to my first post op appt in Boston on Wednesday 1/4/23. I had a LOT of questions for my surgeon, who will follow me through post op. I found out I am truly limited to lifting 5 lbs for 3 months! It was a good reminder to take it slow. I will continue getting lab work 2x/week (which I can do locally)and my team will call to change my medications depending on my numbers. I’ve had adjustments each week. I was scheduled to go to Boston weekly for Dr appts but I’m doing so well that I don’t have to return to Boston for my next appt until 1/23 (that’s 2.5 weeks!). This was a surprise and relief for Jeff and me.

A couple of numbers that have amazed me…my hemoglobin (normal is >12), which 15 mos ago slipped to 4.7 sending me to the hospital and I’ve struggled to keep at 8-9 since, is now over 13! My bilirubin (normal is

03/01/2023

Cindy’s post 1/2/2022
Happy New Year! It’s been a quiet few days since being home and have just been enjoying being present with Jeff and the kids and my parents. A few games, a few naps, a few walks, a little puttering, conversations and hugs. Am so appreciative for the continued love, support, prayers, and practical help people have given and offered. It continues to overwhelm Jeff and me (and bring us to thankful tears regularly). I still don’t know what kind of recovery and needs I’ll have coming up.

I’ve had 2 sets of labs so far and both showed my liver levels trending in the right direction. Each time I’ve had to tweak one of my anti rejection drugs as we look for the sweet spot.

I have another set of labs tomorrow before my first post op appt in Boston on Wednesday.

I continue to heal and improve. I have a couple more days of pain meds as I taper off and then will just manage with Tylenol. My job is to work my way up from three 5-10 min walks to one 30 min walk daily. I had a 15-20 min walk today. I love that there is no ice right now making outdoor walks easy. I’m managing stairs well for a few trips up and down each day. I have no core left (and didn’t start with much) and still have to roll out of bed instead of pulling myself up with my stomach muscles. I still hurts bending over to pick something up. And I get worn out quickly. Am trying to pace myself and remember that it has only been 2 weeks since my surgery.

Along with building my stamina and exercise level, my focus is sleeping well, taking meds on time and consistently, getting labs 3x this week then connecting with my liver team, tracking vitals and ins and outs, hydrating the proper amount, and eating right.

My biggest challenge is eating healthily (high protein, low salt, low sugar, high veg/fruit). I love sweets and salty and need to retrain myself. I also need to ensure my Crohn’s doesn’t act up (some of you may not know about my Crohn’s.) Crohn’s is not curable so will need to continue to manage that as well…(a whole other story entirely).

My skin, I’m told, has noticeably turned toward a pinker tone versus the yellow jaundice of my skin and eyes I had for several years. Jaundice is caused by the build-up of a substance called bilirubin in my blood. This happened because my damaged liver cells couldn’t process bilirubin. Some of the bilirubin will take longer to expel since it has attached itself to proteins in my body that won’t leave until those proteins die off. I had a levels of 7-8 bilirubin this last year(normal is less than 1). My labs on Saturday measured at 2.1! So my new liver (I think I’ll call her “Liv”) seems to be pumping out the old stuff. After “Liv” works overtime to rid my body of the mess left by my old liver, it should be a breeze processing moving forward (I pray).

I love reading all the end of the year reflections from friends and family. ❤️I’m not quite ready for more reflection yet but imagine that will come in the next month…

I know some of you are going through trials now with loss of loved ones, surgeries of your own, financial challenges, broken relationships, illness, weariness, loneliness, etc. I’m praying for you, as well, for God’s peace to overwhelm as you endure this time and come out the other side of it.

29/12/2022

We are home!!! We arrived to the most awesome welcoming committee! So amazing! Our hearts are full! ❤️❤️❤️❤️

29/12/2022

Cindy post 12/28/22

Yesterday I was discharged!!! Yay! The Drs came by in the morning and said the increased lab on 12/26 had dropped again so everything still looked good. Praise God! I have been taking meds to remove fluids collecting in my body so was a captive to el bano. My last drain and central line stitches were removed, as well as my last 2 IVs and all my heart monitoring stickers. I’ve got no strings!

Yesterday was a busy day of education on my nutrition, discharge , next steps, and meds. Some meds are more temporary, some lifetime. An army of pharmaceuticals will help me continue to heal, sleep, ward off infections, and convince my body that the new liver belongs. The anti rejection meds I’ll be taking for the rest of my life…apparently our bodies are naturally very suspicious by nature (sounds like a New Englander😉). I will be taking my own daily vitals and have myself quite a little welcome bag with Bp pressure cuff, thermometer, deluxe pill box 💊 , pill cutter, sunscreen, masks, sunscreen, and hand sanitizer.

Now I enter into the period of tweaking these meds to match my specific body’s perfect dose. I’ll start with bloodwork 3 times a week and weekly scheduled appts in Boston to monitor and tweak until we have the right dose for me. The good news is I have been deemed healthy enough to go home and do the bloodwork in Augusta and drive to Boston once a week instead of having to stay in Boston. I just need to be prepared to jump in a car (driven by Jeff of course) at a moment’s notice if my labs are screwy between appts. We’ve decided to have my first labs on Thursday morning in Boston and head home to Readield in the afternoon once we find out the labs look good. I can’t wait to come home tomorrow!

Today (Wednesday), mom and dad hung back with me to chill, rest, and visit while we stay at a friend’s home on the Boston area while Jeff took the kids into Boston to the Science Museum. Both trios had a great day!

My parents were reflecting today again how thankful we are to God’s gift in His perfect timing with so many perfectly planned, hand guided big and little logistics He made to gift this liver with me. I know He still grants miracles and hear about miracles happening but I never expect them for me. I am honored to receive a miracle and will Praise Him and credit Him as long as I have breathe. He doesn’t always bless us with a miracle. I’ve been blessed through hard times, struggles, “No” answers, things being taken away, death, and ways that most would not call blessings. I praise Him for them all…. The bottom line: the true gift is ANYTHING that brings me closer to Him (my liver is just a bonus).

28/12/2022

Our favorite MGH inmate was sprung from the clink tonight!! ❤️ We are convalescing at the home of a dear friend, loaned to us for the week (blessings abound!) A huge thanks to other friends for entertaining the children for the day while Cindy and I got educated by many care providers and to Cindy’s parents who helped me flash pack three gift baskets for Cindy’s care teams and then patiently waited in the wings “at home” for Cindy’s release. Happy family tonight!

Cindy's Christmas Miracle

02/05/2025

25/04/2023

23/04/2023

10/03/2023

24/01/2023

23/01/2023

23/01/2023

19/01/2023

03/01/2023

29/12/2022

29/12/2022

28/12/2022

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