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.
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.
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.