An unexpected lung transplant

Day 4 on ECMO: waiting for lungs

September 3, 2013 By Tam Warner 3 Comments

Our family at our son's college graduation 2013 — Our family at our son’s college graduation 2013

UPDATE: My children have talked me into going out to dinner with them tonight.

Day 4 on ECMO, September 3. Alexandra is working from the hospital, as am I. At least, I am trying. Looking at essays, making sure my students know their due dates. I will be working with them online pretty much from here on out….Randy is waiting on lungs, and when they come, I will need to be here even more, assisting with recovery. I am staying on top of the students….many of them late with essays. But what else is new? So far they are at least writing. I’ve been getting a bit of grief from my daughter about being here all day. I come up about 9a, leave around 8p or so. She thinks I should not be sitting “vigil”. However, it is not a vigil, I want to be here with Randy because that is how we roll. I know that my voice and presence is known to him even though he is completely sedated, I know he hears the voices of his children when they visit. I spoke with one of my favorite docs on Randy’s team, he has kind and soulful eyes, and he says Randy is strong and ready for lungs. They just need the lungs. As I have said before, the pulmonary group/transplant team here at UT Southwestern is wonderful….the nurses are so kind. Randy has two nurses watching all of his vitals, blood tests, breaths, 24/7. They love my Great white shark adventure, and they actually found the photo on National Geographic. Rodrigo entered it in the photo contest 2011 and 2012. So I’ll publish it here for fun. http://ngm.nationalgeographic.com/ngm/photo-contest/2011/entries/95503/view/?fb_action_ids=10201209954749272&fb_action_types=og.likes&fb_source=other_multiline&action_object_map=%7B%2210201209954749272%22%3A10150380843109201%7D&action_type_map=%7B%2210201209954749272%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D Randy LOVES telling that story, and shows everyone he meets the photos. They are calling me Shark Girl around here now.

I meet so many people: I met a couple yesterday whose father received lungs Friday night, a 70 year old professor, and he is doing very well. Then there is Mary, who is here every day with me, her husband had a lung transplant a year ago, at age 69, and has been in and out of the hospital ever since. His kidneys have failed, his heart is bad….she sits here, or with him, every day. She is such a nice woman. There is the young woman who has a dad here who had a heart transplant that did not go well….there are heart transplant and lung transplant patients on the floor who are out of ICU and walking around, recovering. There are a million stories here.

Just made my rounds…what are my rounds? They consist of going to see Randy, and eavesdropping on as many doctor (especially surgeons) as possible. Today they changed a couple of settings for Randy and I heard the surgeon say, “it’s good to avoid complications in advance”. His settings have further improved his stats. I have my yoga mat for the bad moments…the moments when the fear overwhelms me, when I cannot breathe. Forward fold, eagle, pigeon…..all good for relaxation. I also do balancing poses. Keep the fear at bay and be happy and chipper for Randy.

Again, no matter what you believe in, don’t believe in, doubt, say a prayer, send a positive thought or some healing energy. Atheist, agnostic, catholic, protestant, jew, muslim, yogi….we are all one. Sending out positivity cannot hurt.

Stable, still waiting for lungs

September 2, 2013 By Tam Warner Leave a Comment

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

September 1, 2013 By Tam Warner 8 Comments

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”

August 29, 2013 By Tam Warner 6 Comments

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!

August 27, 2013 By Tam Warner 6 Comments

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

August 24, 2013 By Tam Warner 7 Comments

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?

Transplant. An Unexpected Journey

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