Today was Randy’s 2nd day on ECMO and ventilator. This morning he was trying to wake up, and breathe on his own. The doctors decided they would prefer him calm, and let the machine do the work. He was working against the machine, and his oxygen saturation was suffering because of it. His numbers are good, his labs are good, he is ready for lungs. The team who surrounds him …. they are nothing short of incredible. He went into the hospital just a little over a month ago, and everyone at UT Southwestern has been caring and extremely competent. When he went into distress on Friday, every team member was there from the transplant team, and the critical pulmonary care doctors. Their decision to put Ran on ECMO and a ventilator was made in order to avoid having to do it in an emergency situation. His lungs were failing, they knew how hard he was struggling to breathe, so they decided to “bridge” into transplant. I am still optimistic….Randy is strong, everything is functioning perfectly…except his lungs. Tomorrow is Randy’s birthday….so all I want for his birthday is two pink healthy lungs. If he can just get the organs….I know he would get through the recovery. Every day, though, becomes more nerve wracking as we wait. He is type 0, the most common blood type…. I don’t wish harm on anyone….but I want Randy to live. I am so appreciative that everyone is praying, sending energy and love and positive thoughts. Surely, with so much hope and love coming his way, organs will come in for him. I carry my phone everywhere….even into the bathroom…I sleep with it at my ear….I am waiting for the call, the call that a match has been found. What a birthday gift it would be for him to get lungs tomorrow! They have to come soon.
ECMO and a Ventilator
The last couple of days have been so unbelievable that I truly am in an alternate universe. The day before yesterday Randy’s numbers plummeted, and they decided that ECMO would be the best way to go to “bridge” Randy to transplant. The ECMO is taking the place, basically, of the lungs as far as oxygenating Randy’s body. It was all so scary, Randy’s brother had flown in the day before, and Randy’s dad came in just as the episode began. Everyone tells me that these people are miracle makers…all we need are lungs to have a miracle. Tomorrow is Randy’s birthday, and I want him to have lungs tomorrow, so he can take a nice deep breath. I know the road from transplant is hard, but we are up to it, and Randy is so strong and such a perfectionist he would be a UT Southwestern Lung Transplant poster boy. We just need the lungs.
He was wakeful when I went in this morning….but he is being given medications so he will not remember any of this….when he wakes up with lungs he will be surprised at how much time has passed. I do believe he heard my voice, our usual, “good morning my darling” cheerful greeting. I told him he was doing great, his SATs are good, his labs are good….he just needs to keep it up until the lungs come. I was twenty when we met….married at 21, and we have grown up together, more or less….whatever has happened, good or bad, we have been together through it. Even when we’ve been mad at each other, it is only the other one who can truly give us comfort. Does that make sense? We are two pieces of the same two piece puzzle. I pray, I beg, I ask the universe, for lungs, and to bless the donor.
“The Waiting is the Hardest Part”
Tom Petty is correct: “The waiting is the hardest part.” Randy is feeling very tired, and he is on a “bipap”, sort of a cpap with 100% oxygen to help him not work so hard to breathe. He told me today he was worn out and didn’t want anyone but Ally, Wes, Rex (his dad) and I to visit now. He needs his lungs soon.
Every day that goes by without lungs I worry more….they just have to get lungs soon. He’s first on the list, and O, the most common blood type. Soon, soon, soon. A friend today reminded me of a favorite saying from the Talmud: one who saves a life saves an entire world. It is why we are organ donors, right? If I die in an accident, perhaps a part of me will save someone else. I would want it that way. And I want Randy’s life to continue with me, with our children, our family…oh yes, Tom Petty, you are so right, waiting is the hardest part.
Randy’s spirits and optimism are intact…he is so ready, he wants it done now. They don’t want him up and walking anymore…he needs to conserve the strength he has. He will do some exercise in bed, but not a whole lot. The Lung Transplant Coordinator told me today that he is still strong, still in good shape, his body has not deteriorated yet…so that is good. We just need the new lungs. He has lost about 25 pounds….his body is working so hard to breathe it is burning calories at a fast rate. Yes, I do worry. I am trying to empty my mind, to rest, to sleep. A long road stretches ahead of us.
I worry so much about Ally and Wes. I know what this is like…having a daddy who is ill, living with the fear of it on a daily basis. The reality of this is still so “out there”….how can something like this be happening? So much of this reminds me…but the good thing is that Randy is strong, this happened so fast he is not debilitated like my father was….and lung transplant was not an option for my father. For myself, this is just beyond comprehension. How do I feel? Optimistic, yes, because he just has to be ok. It is NOT his time, it isn’t. I miss him, yes. Scared? Yes. Upset? Yes. Hungry? Definitely.
Whatever you believe, or don’t believe, no matter what religion you are or aren’t, say a little prayer, or send healing energy Randy’s way or light a candle for him. Please.
Transplant Class and I have to stop eating comfort food!
What a lousy day. In the last two months I have apparently indulged in too much comfort food because I cannot fit into my pants. I need to do comfort walking and comfort yoga. I need to do it fast. I also received beautiful red roses today from the Cyber Crew, a group of consultants who stay in touch “no holds barred”. These women are unbelievably wonderful and supportive, and I am so grateful for their care and prayers. Love you, Cyber Crew!
Today was Transplant Class. Possible heart and Lung transplantees and their primary caregivers were present…plus me, with my beautiful stitched up eye and nose. Yes, they all stared. The first two thirds of the class I already knew from my own research and reading UT’s material, and the last 3rd of the class was about being the caregiver. Transplant patients cannot be alone for about 10-12 weeks. 2 or 3 times a week Randy will need to go up to UT for tests, rehabilitation, and more tests. I have a list of things that still need to get done around here: no down comforters or pillows, I need to put hand sanitizer in every corner and a box of clorox wipes in every room. Just the medications alone are enough to overwhelm a person…and they must be taken for the rest of his life.
There was a 2 year post lung transplantee with us at the end of class, a 55 year old woman who had her transplant 2 years ago. She said she has had no real problems, no rejection problems, and she and her husband are off to Europe next week. She wears a mask in public, and wipes everything down with clorox that she will touch. She talked about ATMs, they never get cleaned, imagine the germs! Door handles, countertops, your plane seat and tray and the seat in front of you. Hotel rooms are gone over with clorox wipes as well. Washing hands really does save lives….and washing everything near you. No raw meat or fish, no meat that is not cooked through and through. Too much bacteria. No oysters. No alchohol. NO ONE with a sniffle can come near him. Many people had grandchildren and were worried about that, but they were told that children are exposed to so much that one has to be very careful that they are clean, clean, clean. She said you relax after the first year, but she is still cautious.
After the surgery no one will see Randy without washing, masking and putting on gloves. He will be in an Isolation Room after the surgical ICU. They have also increased his oxygen as he continues to work out and lose weight, and they put his score at 93 instead of 91. They did a transplant up there yesterday, but the lungs were blood type B, and he needs O. Randy said he thinks it will happen in the next couple of days….I have the feeling that lungs outside the immediate zone are being considered or negotiated. The person who was transplanted yesterday, who received B lungs, had a score of 37.
So, it is clear that the kids and I have plenty of work to do in every room of this house. I’m going to pull the rugs, too. Luke and Lucy will be shaved down to be Labs instead of Goldens. So, Randy is making a prophecy that he is only a day or two away…he told the docs he is ready. So, we are still playing the waiting game. Oh, and I think my hair is turning white.
Tam’s Bloody Fall
I don’t mean that in a British kind of way, I mean it literally. I am sort of famous for falling. I fall on flat surfaces, mostly, but also out of boats, into boats, on boats, bus steps….but mostly on flat ground. I fell on Capitoline Hill, right in front of Marcus Aurelius. I received a message this morning from a student who sounded upset, and my phone died. I decided to go get a phone charger from my son, who was sleeping upstairs. I leaned over a pet gate to see if his door was closed….but as I found out, the pet gate was not attached well, so forward I went, and kept going. The gate went down, I went down, and I crashed into the wall (cussing all the while, of course). After I “landed”, I jumped up and ran to the bathroom, I could feel the pain of injury, and blood. I quickly put cold water on it. Wes and Carisa came out of their bedroom (they are staying while Randy is waiting for his lungs), expecting another of my usual falls, so the blood came as a shock. Carisa said I needed stitches in my nose (she was right) and so off to the Emergency Room. The Director of Cranial Facial surgery at Medical City was there in the ER, and he is the one who stitched me up…13 or 15 stitches around my right eye and my nose. sigh. What a mess I am! This is a reason I love to dive….I cannot fall when I’m underwater…I feel safe and supported by the water. I am NOT a land animal. My brother showed up at the Emergency Room and we absolutely roared with laughter…really, how can we do anything but laugh? After four hours, I am home and taking my pain pills. Now everything is hurting….shoulders, neck, I’m scraped up….sheesh. My guardian angel is beside her/himself now! It’s also my mother’s 86th birthday, well….she said she would haunt me! Just kidding, come on, I’m on pain pills, give me a break. I guess I won’t be going to the lake to paddle board tomorrow.
Randy and my daughter are sharing a laugh at the hospital, as I said, falling is sort of expected with me. I usually don’t bleed or need stitches though. I think Ran will probably cringe when he sees my face….I am really lucky, I have a stitch at my tear duct. My guardian angel did what she could. As I always say, it ain’t easy bein’ me! So should I tell fall stories? There have been some pretty spectacular ones. Thankfully they did a cat scan…I’ve had more concussions than an ice hockey or football player. Not this time at least. The pain pills are quite welcome, and if I was concussed, there wouldn’t be any pain pills. I just have mild ones….we could get the call any time for Randy’s lungs. Now I hope it is a couple more days so I can heal a bit…. Actually, my brain scan person said her husband had a pancreas transplant 6 years ago and came home after 3 days! She said he has done very, very well. I love happy transplant stories…they are so helpful.
When I came home from the hospital a delivery came….Swiss and German chocolates from Marcel (Zurich) and Daniela (Munich). So sweet of them (no pun intended). They are fellow All Out Africa volunteers I met in Mozambique, and they came to see me and to dive in Cozumel just a month ago. We had a wonderful time together….amazing what can happen in a month. Stranger than fiction, wouldn’t you say?
Change changes everything
Okay. I confess it, I am having a very emotional time this morning. My kids are cleaning out the garage for when Randy comes home and we started in the dining room, where many of my mother’s things are (for those who don’t know, she passed away in June 2013). Her sweatshirts were numerous….and I plan to have a quilt made out of them….they still smell like her, and pieces of me started falling on the floor. Every time the house phone rings, I think “mom”. She only called me 5 times a day for most of my adult life. Her paperwork, her shoes, my grandma’s cutting board with old biscuit cutter and a roller pin….I can’t believe Mom is gone, sometimes. Our relationship was never what I would call easy…unlike my father, she lived a long life…but still, I mourn. I didn’t really think I would hurt this much. She had been failing for so long….and even in the Emergency Room she wanted me to take her out for a cigarette (she died of emphysema and COPD). Her only exercise was walking outside to smoke! I certainly cannot say she died too young or too soon or too unexpectedly. I am no stranger to loss, but still. It hurts.
The changes have been fast and furious….the last 3 years have been a series of roller coaster rides. Randy’s illness, and need for a transplant, is the latest in a series of not-so-good events…one which is still, for the most part, incomprehensible. I mean, yes, I know what is happening. Intellectually I am all over it, I study it, I’ve researched, and I’m ready. Emotionally? I am incredulous.
Change is life. Everything can change in a millisecond. I know this, I have experienced it. Usually I consider change a good thing, a time for growth, a time to move forward, a time to get excited for something new….but sometimes change can be like a runaway car with no brakes. I realize that the road we’ve been traveling has taken a different direction. Perhaps this is a directional change for the positive. I’m not a person who believes that every second of our lives has been predestined…I do believe in accidents. If we live in a world of free will, then accidents are possible. I agree with Stephen Hawking: I have noticed even people who claim everything is predestined, and that we can do nothing to change it, look before they cross the road.
So I need to make a choice? I choose forward. I choose good, healthy lungs so Randy can continue his life with me, and with his family, and with his friends. It is the waiting that makes us nervous. I know I did everything in the world I could for mother, I know she is gone, and I mourn. I cannot change her passing. But everything is amplified by the waiting game…every day Randy works harder with the physical therapists and gets stronger, and the stronger he is when he receives his new lungs, the better he will be. I keep thinking of something Gandolf the White said in The Return of the King…waiting is like “the deep breath before the plunge.” Every day we wait is like holding one’s breath. It is difficult to be patient, to be uncertain. I’m trying not to hold my breath, I am trying to breathe, to be at peace with the waiting, but as Tom Petty said, “the waiting…is the hardest part”.
Do you know that many people believe in guardian angels? If I have one, she’s awfully busy, poor angel.
