Thursday, July 29, 2010

I'm Baaack!!

I’m home, I’m home! Thanks to the generosity of my donor and her family, the commitment of my wonderful doctors and nurses, the unrelenting support of my parents and family and the unfathomable love I’ve received from all of you, I have a new heart, am home, and am doing quite well.

A huge thank you to Marguerite for keeping everyone informed of my progress – even as she logged long hours at the office during one of our busiest times of the year.

The last eight days have not been pretty, but I’m told I’m making good progress. I even walked out of the hospital today because the wheelchair was taking too long! My first heart biopsy result was negative for rejection today, so that’s a GREAT first step.

I have so much to say and share, but I haven’t built up much strength just yet. I did want to post a quick note to confirm that I have made it home and to thank you for the outpouring of support. I am so touched and humbled by all of your kind words. The piles of e-cards I received were a true inspiration and gave me the fuel I needed to power through each day.

Thank you for joining me on this journey. I have a long road ahead and truly appreciate your continued support! More to come soon…

Tuesday, July 27, 2010

Day 6 - Cheeseburger in Paradise

UPDATE FROM MARG - Very short update tonight as things are progressing smoothly at the hospital. Our girl enjoyed a delicious cheeseburger from Rafferty's for dinner tonight. And I'm guessing that it tasted better than any cheeseburger any of us have ever had.

She was a little uncomfortable with pain today, but otherwise recovery is going smoothly. Nurse Dreamy did her job last night and Andrea finally got a good night's sleep. The doctors are hoping to spring her from the hospital on Thursday - fingers & toes crossed that all continues to go well. Many thanks on Andrea's behalf for all the great comments & well wishes - please keep them coming!

Monday, July 26, 2010

Day 5 - Out of the ICU!

UPDATE FROM MARG - Happy to report that Andrea has officially moved out of the surgical ICU and onto the regular cardiac step-down unit. She continues to feel good today and even ate a full dinner tonight - her first real meal since Tuesday night, and a critical milestone because it was her first meal without sodium restrictions since October! Next stop: that slice of pepperoni pizza she'd been dreaming about.

Andrea's iron levels have been low, so they gave her another unit of blood tonight. The doctors don't seem to be too concerned, and are keeping a close eye on her. Her nurse for the evening is named Dreamy, so she's hopeful that this means she'll finally get some sleep...

Many of you have been asking what you can do for Andrea & her folks. Right now, e-cards, comments on this blog, and prayers are the best offerings you can make. When she is released from the hospital, I am sure Andrea will appreciate any care packages you'd like to send her way, but in the meantime, please just keep cheering her on! Thanks for your continued well-wishes for our dear girl & her family.

Sunday, July 25, 2010

Day 4 - First Visit from Non-Family Members!

UPDATE FROM MARG - All the exercise must have done her good - Andrea has turned a corner and is doing AMAZINGLY well today! I just got back from visiting her in the hospital, and she looks so good that if it weren't for the significant incision on her chest, you would be convinced that she was in getting her appendix out. Her blood pressure is back at normal levels and she has more color in her face than she's had since October (when she first got sick). She was moving around pretty comfortably in bed, and even walked out to the hospital atrium earlier today to get a change in scenery from the ICU.

Her nausea has largely faded (finally!) and so she woke-up this morning feeling like a new person, texting friends at how grateful she is to be alive. The plan is for them to move her out of the surgical ICU and onto the cardiac floor tomorrow, and then to hopefully discharge her within a week if all continues to go well. Andrea's parents are encouraged by her continued progress and how much better she was feeling today. Please keep sending positive thoughts & prayers her way - we're all hoping for a continued smooth recovery.

A get-well card drawn by a friend's 4-year-old daughter, Cailyn. Commentary was, "A picture of Andrea with a new heart and a pretty necklace. Her ears don't look that big in person."

Saturday, July 24, 2010

Day 3 - First Exercise with Her New Heart!

UPDATE FROM MARG - Another good day. Andrea continues to be the valedictorian of heart transplants, and today completed not 1 but 2 laps walking around the floor in the ICU. They have weaned her down to only 1 medicine in her IV, and her pain management seems to be better today. The most stubborn symptom that she is complaining about is the never-ceasing nausea, which the doctors think is being caused by the steroids she is on. They may move her to the cardiac step-down unit tomorrow, where she is hoping that she will get better sleep.

Our girl seems to be turning a corner - today she read through all the e-cards she has received so far, and asked for both her cell phone and her iPad. Please continue to send her messages on the blog and e-cards through the hospital - as she is coming out of the fog of the last few days, I think they will give her the boost she needs to keep fighting. Thank you for all your kind words and well wishes - I know she appreciates them dearly.

Day 2

UPDATE FROM MARG - (Posting yesterday's update). Andrea's body continues to get stronger. Yesterday they removed her chest tubes and weaned her down to only 2 of the 12 IV medications she had been taking. She sat upright in a chair for several hours, which is terrific progress. Andrea's chest is hurting her quite a bit, so her doctors are adjusting her pain medications to see if they can make her more comfortable. She will remain in the ICU through the weekend, which is good news since the nurse/ patient ratio is lower in the ICU than the step-down unit.

Yesterday she was flooded with e-cards, which I'm sure will help keep her spirits up. She hasn't had the strength to read them yet, but asked her mom to bring her glasses to the hospital, so hopefully this weekend she'll get a chance to flip through them all. Please keep all the well-wishes coming!

Thursday, July 22, 2010

Day 1 as Andrea 2.0

UPDATE FROM MARG - Our dear girl continues to gain strength as she rounds out her first 24 hours post-transplant. When I spoke with her mom an hour ago, Andrea was actually sitting up in a chair! She is still very sleepy and her chest is hurting her a bit, but all things considered, great news only 24 hours after surgery. They removed her breathing tube and PICC line today (the PICC line is the one that has been delivering life-saving drugs to her since November, also the source of the twedgie), and may move her out of the ICU and into a step-down unit tomorrow.

Her family is doing great and is encouraged by the progress she has made today. Please continue to post your well-wishes as comments on this blog - I think it will give them a huge boost to see just how many people are rooting for Andrea all over the country. If you would like to send Andrea some well-wishes personally, you can send her an e-card via the hospital website - they will print it out and deliver it to her. Please keep cheering her on!

Wednesday, July 21, 2010

She Got a Heart!!

UPDATE FROM ANDREA'S FRIEND MARG - I am thrilled to be able to report that Andrea just came out of surgery with a new heart! She did great and her new heart is pumping strongly.

Andrea got the call we've all been waiting for a little before 5 a.m. this morning. After waiting on pins & needles for much of the morning, she got the official nod around 1 p.m. that this was going to be her new heart, and went into surgery around 3:30 this afternoon. Her dad was able to catch a quick flight up from Atlanta, and arrived at the hospital several hours before she was taken to the O.R.

When I talked to Andrea this morning, she was in very good spirits - a little nervous, but also really excited about this next step, and fantasizing about the pepperoni pizza she hopes to have a slice of at some point post-transplant.

Please keep our dear girl and her family in your prayers - as you can imagine, today has been a long day and a jumble of emotions for them, as well as a big step forward in what will continue to be a very long journey. Please also keep the donor's family in your thoughts & prayers, as this is undoubtedly a very tragic time for them.

Please feel free to send Andrea some well-wishes by posting comments on this blog. In a few days, I will also post the link for how to send her an e-card at the hospital. The outreach that she has had from all of you in the past several months has really meant the world to her. Please keep rooting for her!

Friday, July 9, 2010

Will Limp For Subs

My good friend A has an amazing sister with a disability, so she and her family have license plates with handicap decals. Even during her carefree teen years and our collective “I just graduated from college” entitlement-ridden early twenties, A has always been very opposed to abusing this privilege. No matter how much we begged or how adamantly we claimed we were too exhausted to walk from regular spots, she would never park in a handicap space unless her sister was with her. Well, almost never.

One day in late 2003, our other friend L, A and I were going to Quiznos for some delicious sandwiches. Mmm…Quiznos….oh sorry, the melted cheese and toasted bread just speak to me, especially now that they are forbidden. Anyway, we were going to get sandwiches and this particular Quiznos conveniently had roughly three regular public parking spots, all of which were full. We circled and circled but eventually our growling stomachs insisted we eat as soon as possible. L and I became increasingly obnoxious in our attempts to get A to park in one of the million available handicap spots. Eventually, we convinced her that there were plenty of other spots available for disabled folks and that we’d be super quick. In an attempt to mollify A’s guilt and publicly justify our decision, L and I even limped in and out of the store.

Because of A's conviction, I have often found myself glaring at people parking in handicap spots without a visibly disabled passenger. I have assumed they are just being lazy, since obviously a handicapped person is not present. But now that I have my own handicap permit due to a disability that is invisible to the casual bystander, I realize many of my glares were probably unwarranted. Though I don’t park in handicap spots very often anymore, I do still use the permit at work. I figure the more energy I can save for my actual work, the better. I sometimes get looks from passersby as I emerge from my car and appear to be physically healthy. Most of the time I just assume I’m paranoid and carry on, but sometimes I feel compelled to inject a little limp in my stride as I walk into the office. On the really good days, I pretend I’m limping into Quiznos for a delicious Turkey, Ranch and Swiss sub!

Sunday, July 4, 2010

To Do Post-Transplant

This wait is getting pretty depressing. It gets harder every day to remember how fortunate I am to be alive and to have a solution (transplantation) to my problem. It’s hard to be grateful that I only need a temporary handicap permit. It’s easier to compare myself to most people my age, who are doing normal things like spending the long weekend out of town with friends, dating and getting engaged, getting promotions, buying houses, having babies…or just dining out at restaurants without worrying about how much salt is in each dish.

So, instead of dwelling on what I can’t do right now, I’ll try focusing on the things I want to do in the future. This is a list of the top ten things I want to do post-transplant (in no particular order). Some of them are short-term (especially #1!) and some are years away, but they all have one thing in common – I can and will do all of them one day.

1. Eat a slice (or two) of very cheesy pizza. I know better than to do this frequently, but I think the occasional indulgence will be okay.
2. Go skiing somewhere cool – either out west or eventually in the French or Swiss Alps. I’ve only skied once in at least the last five years, but I love it!
3. Rent a kayak and paddle around. It’s great exercise and a lot of fun!
4. Visit all 50 states (airports don’t count). I’ve been to 34 already and have plans to visit my 35th (Maine) in September.
5. Run a 5k. I’ve hated running for a long time, but I think my tune might change.
6. Buy a house. I’m very much over smelling other people’s dinner and hearing other people’s music.
7. Get a dog. I’m taking this opportunity to show off my parents’ dogs below - they are the greatest!
8. Take tennis lessons.
9. Go back to France. I’ve vacationed there twice and lived there for six months, but I can’t get enough!
10. Compete in the bi-annual Transplant Games!

Thursday, July 1, 2010

Memorable Moments

I’m back home after another stint in the hospital. I began having flu-like symptoms last Wednesday night, my mom called the doctor on Thursday morning and I was advised to come to the hospital in case I had an infection. As it turned out, my PICC line was infected after being healthy for over six months. I was there for four nights, small potatoes compared to my past nine months. I like to quantify these things – I’ve spent 39 of the past 255 nights in the hospital.

In all of those nights, there have been many memorable events involving my own illness, treatment, hallucinations, etc. There have also been some interesting moments concerning other patients. After all, staying in the hospital is sort of like staying in a hotel (there’s even room service), except all of the guests are constantly in their rooms, all doors are almost always open and the walls are very thin. As I was lying in my bed the other day, listening to the cacophony, I reflected on the most memorable non-me moments I’ve experienced. Here are a few:

Mama Mia – When I first moved from the CCU to a step-down unit in November, I had a new next-door neighbor. I really felt sorry for the woman, I did. But I was also losing my own mind and desperately needed the peace and quiet that came with sleeping in my own bed. This woman was clearly either permanently or temporarily demented and continually called out from her hospital room. She alternated, “mama mia, mama, mama mia, mama” with “aqua, aqua, aqua” and “water, water, water” for those of us who don’t speak Italian (I assume she was on fluid restriction). It was absolutely maddening. Fortunately, my dad convinced the nurses to move me to another room, so I only had to listen to her for about 24 hours…a very long 24 hours.

Come Back, Mr. P – During that same stay, I had another neighbor whom we’ll call Mr. P. The poor man was also experiencing some sort of dementia, presumably from either meds or being in the hospital for an extended period of time. He kept getting confused and agitated, and he continually attempted to leave the floor. He was attached to a variety of instruments for IV medication and heart monitoring, so he would rip everything out and scurry down the hall. Not only did he then have wires and tubes trailing behind him, but he was wearing a hospital gown and a double holster (a stylish accessory required for holding the external parts of the LVAD), so he looked sort of like a discombobulated naked cowboy marching down the hall.

It’s 5 O’Clock Somewhere – During a visit to the ER in late November, I witnessed maybe the drunkest person ever to survive. My mom and I were sitting in the ER waiting for a room to become available upstairs at about 3 or 4pm on a Monday, when in rolls a belligerently drunk grown woman. She was screaming things related to her sexual desires and using as much profanity as possible. My mom attempted to get the scoop, but the show didn’t last long. The woman was promptly sedated and placed behind closed doors. I would expect that type of spectacle if I were in the ER on a Saturday night, but a Monday afternoon – really?

Lowest Low, Highest High – During my most recent visit, I witnessed a woman going through one of the scariest things that can happen and then the happiest thing I can imagine. One night as I was preparing for bed, I heard her suddenly start screaming that she couldn’t breathe (the primary symptom of advanced heart failure). I felt like I was witnessing my own experience right before crashing back in October, so I was pretty freaked out. Nurses and doctors rushed around trying to help, as the patient became more and more panicked. Finally, someone figured out her LVAD (the same life-saving device worn by Mr. P, which essentially keeps the heart beating until it is replaced) had short-circuited or something. VERY scary. Anyway, they fixed her up and the next day she got a new heart! Rumor had it she was doing very well after surgery. So after experiencing one of the scariest moments of her life, she received the best news imaginable. Talk about memorable.