These last few months have been exciting as I heard back from the recipient of Alyssa's lungs and her name is Cindy. We set up a meeting date in February where she and her husband Carl came over for lunch with our family. It was such an emotional meeting and I instantly felt that between hearing her letters and meeting her, that she was without a doubt the person who was supposed to receive these lungs.
Cindy & Carl
Coincidentally, she and Carl lived in Libertyville for 40 years. He was a PE teacher at Libertyville High School, where our kids went, and also coached three sports. He still comes to town and recognizes many of his old students, and still gets his hair cut at the Libertyville barber shop.
Even crazier, her husband and I have a mutual friend named Lester who owns Sports 11, a shop where everybody gets all their Libertyville HS sports equipment and t-shirts. Carl and Cindy have known Lester and his wife for the past 30+ years. The coincidence is when Alyssa was a toddler, she developed a liking for Lester. We would visit him at least once a week, and he'd treat her like his little grandchild and give her a soccer ball, t-shirt, etc. When she was age 4, 5, and 6, our family was invited to Austin (a restaurant in town) where Lester rented out the entire facility and paid for all the food, drinks, prizes, etc. for the friends who came to join him. Those three years that we were there, so were Carl and Cindy. We were probably sitting no more than 2 or 3 tables apart.
I find it so amazing when I think that one year after the third party we attended, Cindy was just starting to feel a bit ill with her respiratory condition. Who would have ever guessed it would be my daughter who would save her life. After I met her, Robin posted the whole story on Facebook, including Cindy's 180-degree turn that allowed her to meet her eight grandchildren. She was never able to meet them before because she was at high-risk for developing illness and was house-bound on oxygen for eight years. During our visit, we listened to her lungs through a stethoscope, and because Cindy is about the same size as Alyssa was, when we hugged her goodbye, it was as if we were hugging Alyssa goodbye.
I have yet to hear back from the recipient of Alyssa's liver but recently got a call from the eye bank. They were able to use both of her corneas for transplant. The young girl who received one of them lives about an hour south of me. They believe she was totally blind and now has the ability to see. The gentleman who received the other cornea was 66 years old and from Chicago. I would like to meet both of them. This week I will be writing them and signing a waiver so if they want to contact me, the process won't take so long. Uniting with The Gift of Life (organ donation) recipients took a whole year.
Sadly enough, Alyssa's best match of all was a woman from NY in her 50s, who was waiting for a heart while on a heart/lung machine. When she got it, everything took fine, but she developed an infection with all the autoimmune drugs you need to take and the doctors were not able to get rid of it. She unfortunately passed away 3.5 months later. I wanted to meet her so bad. Also, Alyssa's intestines were donated to a young man but rejected immediately so they put him back on the list. Before this, I didn't even know they could transplant intestines.
February was a very blue month as it was the anniversary of Alyssa's death on the 27th, although we felt it was really the 25th when she went to Condell, because within the first five hours, she was already brain dead.
On the 27th, as a family, we planned to go to the school after dismissal to meet at her swing and release balloons, and then to Culver's in the evening, which was the place she frequented with friends after a lot of her dance events and other special occasions. When we got there, there were shifts of kids showing up - about 40 in all - who were throwing balloons up and sharing stories about Alyssa. I felt like she had such close friends, I wanted to give them something as a reminder of things they used to do together. One being, we used to always make pretzel rings with Hershey's Kisses and M&Ms, and she also found it so much fun to mix regular Jelly Bellies with BeanBoozled Jelly Bellies that taste silly like grass, toothpaste, dirty socks, dog food, etc. So I made up goodie bags for all the kids. They each took turns eating one Jelly Belly and it was funny to see if it was a good one or bad one.
If the month wasn't blue enough already, it became worse when I found out I needed Mohs surgery on the top of my foot and on my bottom lip. I was shocked to see that I lost 2/3 of my bottom lip to cancer, and then had to go to a plastic surgeon who pulled the inner lining of my lip over the top and sutured it down so that I wouldn't have an inverted lip when it healed. In addition, I had a deep, silver-dollar-sized Mohs surgery on the top of my foot. The plastic surgeon closed it with an incision from my ankle to my middle toe so he could pull my skin from every direction and close up that hole. I was told not to walk on it for three weeks because if it tore open, I would have needed a graft on the top of my foot. I must say, after all the pain in my lip and foot, both have healed so well that most people can't even tell I had the surgery.
Speaking of health, I finally got a reprieve where I don't need to see my skin doctor for three months, my eye doctor for three months, my kidney doctor for three months, and my neurologist for about six months. Here's the summary:
Kidney: My creatinine is 1.6 (better than last time) and I've had just one more infection.
Eye: The doctor decided not to do anything - no injection or draining - basically because he thinks I'm done.
Neurologically: They noticed I'm a little more off balance and I've had three tumors get slightly bigger in my head, but if they wanted to do surgery, they wouldn't know which of the three to take, so instead they will wait and do a scan in November unless more symptoms appear before then.
Headaches: I have had headaches now for about six weeks - I can't get rid of them. They told me that looking at my brain, I'm a person who is probably going to have headaches forever because of all the surgeries, the few tumors still in there, and pressure changes from the weather and fluid retention. Now that spring is here, I'm hoping it gets better.
Skin: They started me on a drug to decrease sensation to my nerve endings because when I discuss my itching and crawling feeling under my skin, they feel it's related to my nerves. It has been working so far. It comes with a lot of side effects, the biggest one being fatigue, but I'd rather be more tired than having to deal with scratching all over. I'm taking fewer pills now, too.
Pancreas: My pancreas fluid is coming back and I'll need to get that drained again. I wish they could just seal it off.
Thyroid: On Wednesday I'm getting an ultrasound on my thyroid nodule, which I've had for the last four months but was not told about it until last week. Say your prayers and wish me luck! There are no symptoms with these and 80% of them are benign. I'll also get a mammogram that day.
Since my niece Taylor is graduating high school on May 17, I thought I deserved a trip to Florida to see that. I'm leaving May 13th and returning on the 27th. I'm looking forward to the warm weather and getting to visit with Robin and her family again.
My cousin Wendy had her baby girl who is healthy and I'm excited to meet her. She is probably six weeks old now.
My uncle Lou, who is 88 and was given a year to live 2.5 years ago, suddenly gained about 25 pounds and suffered shortness of breath and was rushed to the hospital, where he stayed for 22 days. They did surgery on his heart and put in a pacemaker, and now he can walk .5 mile per day with no problem. He and Winnie will celebrate their 60th wedding anniversary in June with a big family party.
As Lou was checking out of the hospital, my cousin Stacey had a gallbladder attack and stayed in the hospital for several days after they removed it. A week after discharge, she found herself having the same pain and she ended up having gallstones in her bile duct. Now she's fine and back to work. It was a crazy month for that side of the family.
Also during the winter months, we attended the first annual reception for donors and recipients of kidney transplants held at the University of Chicago. All the patients who had received a kidney in the past 1.5 years were invited to the luncheon, as well as their donors, surgeons, nurses, post-transplant teams, etc. There were well over 100 people. My donor Maureen was asked to speak and it was special because she talked about my story. Awards were given to all the donors and a photographer took photos. At my table it was me, Tyler, Lindsey, Suzanne, Maureen, and her husband Tom.
Steve is still in sales and but also still dealing with the loss of Alyssa. Last week he was saying if there were two things he could change in his life, it would be if his wife wasn't blind and his daughter didn't pass away. He is fixing up our old van for his sister.
I, myself, have been in a grief group through The Chapel and have been finding it very helpful in discussing how we all grieve differently, and looking at healthy ways to cope along with the religious focus that is comforting to help with any loss. My session ends in three weeks, so after that, I plan to possibly find a therapist or somebody else to talk to who deals in this field.
I'm looking forward to a relaxing, uneventful spring and summer, but also to doing some more traveling. In addition to my sister in May, I want to go see my brother sometime between June and August.
Many thanks to all of my friends for all of their support and much needed friendship over this past year. Now that my doctor appointments are lessening, it will be nice to be able to do more fun things with friends. Recently I've been to dinners, lunches, book clubs, the movies, and I saw Jay Leno perform and went to the Chicago Improv for stand-up comedy. I'm looking forward to going to Ravinia for concerts this summer, and I've got tickets to see Elton John in February of next year. I'm also looking forward to getting together with my sorority sisters for our yearly day at the track, dinner out, and maybe even the polo tournament that we talk about every year.
I've also decided I really do want to write a book so now I need to figure out an outline for it. I think it will be therapeutic.
Wishing you all a happy spring!
From Angela and Ron for our memorial garden...
...and another for our wall (with raised lettering for me)
From Tyler's friend, this rose from Ecuador will open and close for seven years
Also thankful for a handmade bracelet from Maui with a cross and purple beads
No comments:
Post a Comment