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.
A Summary of my Volunteer Trip to Tofo Mozambique
June 2
Ah, I now have to time to catch up on my blog as I fly over Mozambique, headed to Joburg. On Monday I came down with a stomach bug. It must have been the stomach bug of all time, because I have never felt so sick in my life. I was sick enough to call upstairs for a doctor, and the owner of Peri Peri was at the guesthouse with his wife. I think I have already blogged about how he tested me for malaria, and no, I don’t have it. My CPAP was out, and most people here seem to think it is some kind of oxygen or ventilator, I guess people in the rest of the world don’t have CPAPs or sleep apnea, mine gives me a solid night of sleep but isn’t a big deal. Where did I get the bug? Who knows, but for a month I shared regulators, fins, wetsuits, shower and bath facilities, water, and various other things. I also spent several hours with little children. It would be easy to pick something up. Either that, or I ate something. I slept the next day, and then Randy arrived. By Thursday I felt 110%, better than I have felt for years. However, the owner of Peri Peri saw me ill, and even though I feel great, I was not allowed to dive on my last day. I was quite upset, but I have put it in perspective. As I have already written here, the diving was extremely challenging, and the first two dives were very poorly done on my part. I did adjust, and dove for the rest of the 3 weeks without issues. My last dive would have been no problem at all and a wonderful finish to my trip, but I didn’t argue although I was deeply upset. I did everything on the trip I was scheduled or asked to do and more.
The dive conditions varied tremendously, from the worst current and visibility I have ever been in to maybe 30 ft visibility with surge. Not easy. The diving turned out to be a great disappointment as I did not see any mantas while diving, no whale sharks, leopard sharks, bowmouth guitar sharks, leatherback turtles…. I came on this trip for many reasons, but one of them was to see these animals. I have seen documentaries and read that Tofo is the epicenter of mantas and year round whale sharks. Perhaps it used to be, but I was there for one month, and the only one of these creatures I saw was a manta while snorkeling. I saw more dead sharks and rays than live ones, sadly enough.
In summary, I am quite pleased with my trip in most ways, and I really enjoyed being there, the scientific community is terrific, but I doubt I will return to Tofo. My son Wes would love it and do great there, and his girlfriend Carisa (who is an organic farmer) could teach or start farming in Mozambique. As for me, I’m thinking Thailand or Egypt or Indonesia…..on a luxury live aboard, haha.
This trip was a challenge I set for myself. Never in my life had I travelled so far, alone, never have I volunteered on such a project. I wasn’t trying to prove anything, not even to myself, but I was challenging myself and my lifestyle, and the fact that I have hit midlife. My youngest is a senior in college, and I am done raising my family (well, as finished as a mother can ever be). I enjoy my career immensely as I care about, and like, my students. I do not want to just “age gracefully” now and wait for grandchildren so I can bake cookies (hardly my style), this is the time of life for me and my interests.
Many of us do not really know who we are until we are older, and in some respects it is true of me. I have never really fit anywhere. When I was a child and a teen I tried to fit in. In my twenties I appeared to blend in, and by my 30s I was comfortable. All of my life I have admired those people who seem to have it all together, who seem to fit into groups with ease: everything is in its right place, it is all organized and planned ahead, things are not left behind, forgotten, or broken, they don’t forget their weight belt or to put the jacket on the tank before hooking up the regulator. Shit, I just remembered I forgot my prescription mask at the dive center. Sometimes I make myself crazy! I’ll ask Ben to bring it back to the US and mail it to me. Anyway, I do so admire those got-it-all-together people, but I have come to full acceptance that I will never be one of them, no matter what I do or how hard I try. I leave things, forget items, drop and break things. I trip on flat surfaces and go flying, I fall down on boats and buses as well as off of boats and buses. I am accident prone, ever since I can remember I have had cuts and bruises with no concept of how I got them. I am the true version of the absent minded professor of the old Walt Disney movie (it is an old one, I really cannot remember it except for the professor who barely knew where he was most of the time). We are who we are. All of those things about me anger me, embarrass me, and frustrate me, but really, I need to just accept it. I’m better when I take my Focalin for ADHD, but I didn’t know if it would be okay while diving so I didn’t take it. I do have many redeeming qualities. One of those is a commitment to service, to giving back, to helping others. My volunteer mission in Mozambique served 3 purposes: to challenge myself physically and test my endurance, to give my time and energy to a worthwhile project, and to learn even more about my passion for marine animals (any animals, really). So how did I do?
I was successful meeting physical challenges I thought were beyond me. After the 10 year debacle of my back surgery, MRSA infection, and other various health nuisances (nothing serious or fatal, thanks be) which included this awful weight gain, I doubted my physical endurance and capability. I have just spent a month walking miles a day, climbing up steep hills or stairs, pushing a zodiac into the water, diving in tough conditions, snorkeling in a sometimes choppy sea, and here is what I have to say: bring it on, I am ready to do anything. I have lost weight, gained strength, and found more confidence in myself than I have ever known. I’m ready to go anywhere, and I am really looking forward to my girl’s trip to Lake Tahoe in August, because I have no qualms now about climbing, hiking, or rafting. Of course, I’ll probably fall on my face doing it, but that’s ok, situation normal. I have always wanted to go sky diving….I wonder if it is as fun as jumping off a cliff to handglide or cage dive with Great Whites? I think I’ll put it on my to-do list.
I wish I could have contributed more to the whale shark project. I actually do more surveys and logging for REEF on my own than I did at this project. I enjoyed learning about the databases for whale sharks and other animals, and I always have confidence in my mental ability to do those kinds of things well and in a very thorough manner. Once you learn the old Scientific Method in grad school, you never lose it. I did learn some new information, but really, not a whole lot, and that was a bit disappointing too. I had hoped for more real research activity.
So, the success of my trip was personal success, and I am happy with that. I didn’t complain about anything, though a few times I wanted to. I kept my mouth shut, another amazing feat for me since my foot is usually stuck in my mouth (or as my dad used to say, “don’t let your mouth get your ass in trouble”.) The other major success of this trip is due to my housemates and fellow volunteers. They were wonderful to me, and I enjoyed my time with them very much. It is amazing how quickly bonding takes place! I am old enough to be the parent of some of them, but I will consider them as friends for the rest of my life. I hope they all come and visit me in Cozumel or Dallas! I’d love to dive with them in a relaxed holiday environment. Of course, I am always planning a trip to Europe, and now I have even more reason: Daniela in Munich, Leslie in Basel, Marcel in Zurich, Felix in London…..) Age is really just a number, it does not define who you are or what you can do. Besides, 50 is the new 40!
SO. I am on my way to Joburg with Randy, who had a bit of trouble with the walking and hills in Tofo, and tomorrow we will set out for Arusha, Tanzania and a new adventure! BRING IT ON.
“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.
Dives and Casa do Mar in Tofo, Mozambique
May 28
I spent a miserable night last night. On my way to bed I discovered that our electrical outlet quit working, so I had to go downstairs and sleep in the middle, airless, windowless, storeroom/bedroom. The mattress (if you can even call it that) was so thin I could feel the bed slats, so I decided to put the mattress on the floor. I did get a fan and had it on all night. I woke up aching. I then changed, went upstairs and turned on the faucet…no water. Shit. So I decided to check into Casa Do Mar a day early. I then did a two tank dive this morning. The ocean was a bit rough, with swells. The first reef was 30 minutes out, called Outback. No mantas, leopard sharks, bowmouth guitar sharks, leatherbacks or whale sharks. Sigh. But I did get some nice photos. The dive went quickly, there were only 4 divers, the leader and the “sweeper”, but one of the men blew through his air quickly and had to go up, then the other guy had an equipment problem, so after 20 minutes we were ascending. It is a deep dive, maybe 90 feet. After the dive we cruised around looking for whale sharks, but no luck. Second dive was called Giant, also deep. We were headed up after 20 minutes. You can’t stay on those deep dives very long, especially after you’ve already done a deep dive.
After we returned I went directly to Casa Do Mar and checked in. I went to the house and packed up quickly, had one of the guys from the guesthouse come and get my bags, then I spent a glorious 15 minutes under a hot shower. Ahhhh. The bed is heaven…it even has more than one pillow, and the mattress is great. I fell asleep pretty quickly, then Leslie knocked at my door to tell me they were having a barbeque at 630p. I am having electrical plug issues here, they don’t have an adapter for a 3 prong US plug. I’ll have to figure that one out.
Right now I am sitting on the balcony of the guesthouse, listening to the surf, and enjoying the breeze. The volunteer house is always hot and stuffy, so this is a treat. I am so happy to be back in the land of amenities.
I have learned so much from this trip, although not what I thought I would learn. I have done some small amount of research, but there have been no whale sharks to id or tag, and only two manta rays on an ocean safari. I have added to my knowledge of humanity. I have come late to the realization that life goes on no matter what you do and what you try to do. People are born, they suffer, and some suffer more than others. Happiness is a moment here and there, it is not a stable state of mind. I have seen cruelty in Mozambique, but there is cruelty everywhere. I have seen terrible poverty and ignorance, but again, it exists everywhere. For as long as there is no general will among people or nations to change the conditions of poverty, ignorance and cruelty, there will be no change. What can we do as individuals to alleviate some of the pain in the world? Well, I know what I can do, though it is small. I plan to give money to Suzanne and Martina, volunteers at the orphanage in Inhambane, so they can buy fruit for the children. The children eat rice and water, no fresh vegetables, no fresh fruit, no milk. So, those children will receive fresh fruit. The money donated to the orphanage seems to disappear into the pockets of the employees, and there is a “chef” who prepares the rice, but we don’t want the fruit to go into their hands. It will be purchased daily from the market and given to the children during lunchtime. It is a small thing, but it will help those malnourished children. I can also bring awareness to the plight of our ocean, and our marine ecosystem.
I cannot fix it myself, but I can tell others about it. I am seeing the result of overfishing, of targeting sharks and rays on this coast…there are few left. DON’T EAT SHARK FIN SOUP. It is so disgusting, anyway. Shark fins should stay on sharks, and sharks should stay in the ocean where they belong.
Parties, babies and owls
May 26
Well, I missed my dive this morning. No, I wasn’t hung over, I felt ill during the night, as did my roomie, Leslie. After imbibing a lot of alcoholic substances, the group went to Tofo Tofo, a restaurant in the village. Dinner was delicious, I think it was the ice that made me ill. Ice can be a danger as we all know. I should have stuck with the bottle. I managed to “sneak” away after dinner, Daniela had quite a few cocktails and insisted I go to Fatimas with them to dance with her.
I asked Patty to distract her, which wasn’t a problem, and I headed home, taking the shortcut through the woods. Leslie insisted on walking me to the fork, and it is good that she did, because I would have missed it. It was a fun evening! Some of them cannot remember much about it today, though. LOL.
Suzanne is the only housemate who is not on the ocean project, she is volunteering at the orphanage in Inhambane. She has told some very sad stories, and today the children came to Casa Barry for a day by the ocean. I watched the children play for while, and then held and fed a little girl named Denicea. She has bedsores from not being turned over often enough in her crib, and her nappy (diaper) was basically a dishcloth. At 8 months old she can barely hold her head up. There were 4 or 5 babies there, and they did not cry or react at all, they just sat there. They have learned that crying or cooing gets them no attention, so they don’t make a peep.
By the end Denicea and the 7 month old baby (who was no bigger than a 2 month old) Katie was holding were reacting a bit, smiling a little, and cooing. They want the food just shoveled into their mouths they are so hungry. The other, older, children, who live on rice and water, enjoyed hamburgers and chips with soda and ice cream. I’m sure a few of them will be ill tomorrow, but they really enjoyed it today. Many of them did not know what the vegetables were on their plates. 
Needless to say, it was a sobering event, although it is not helpful to be sad around these children….I saved that for after they left. I took a long walk on the beach. I plan to give money to Martina, a volunteer at the orphanage who is married to Steve, the dive shop owner here, so she can buy fresh fruits for the children.
Donations directly to the orphanage do not get to the children, sadly enough, so it has to go in a roundabout fashion. How can anything ever change here, or anywhere else? There just seems to be so little will to make improvements, for anyone or anything. I admire the volunteers and scientists so much, whether they are working for the environment, the animals, the children, or education, they work against impossible odds.
A salad for dinner, made by Daniela, followed by exhaustion and the desire for early bed. However, the electrical outlet has stopped working in our room, so I am moving downstairs. GRRRR. I am certainly not moving all of my stuff, and I will ask at Casa Do Mar if they have a room for tomorrow night. I’m ready for some pampering, a washing machine and an air conditioner!
This evening Leslie came in to tell me there was an owl in the yard. Sure enough, an owl was sitting on one of the fence posts. It makes me terribly sad. Owls are highly emotional birds, and are very, very bonded to their mate. Often they can be monogamous and have been known to die of melancholy when their mate is lost. I’m sure the owl of tonight is wondering why his mate’s scent ends at our yard. It just kills me, and the memory of what happened serves to make me angry and sad at the same time.
Tomorrow, I dive.