Dear friends and family,
I want to sincerely thank all of you for taking the time out of your busy lives to read this blog, for sending loving emails to me. I apologize that I cannot respond to each and everyone of them. But the love is overflowing and I have 18 pages of email printouts to share with Ana when she is ready. Thank you, thank you, thank you, for all your prayers and love. When my role was reversed with Ana, she wrote about all the prayers that were said about me, “Love was talking and God was listening.” And that indeed is happening to Ana.
Today was another good day. Ana had a few ‘road bumps’, scares that just convey the fact that nothing about a lung transplant is ever smooth, easy or straight forward. She had some renal failure due to the blow to her kidneys with so many toxic drugs, and the fact that she was retaining so much fluid in her tissues (hence the thunder thighs) and was not flushing out her kidneys. Thanks to God, the kidney failure seemed to resolve as quickly as it came, with some Lasix, and by 6pm, she was urinating buckets, which is always a good thing.
Last night there was also a period when her CO2 was high (70) and she had a very hard time breathing, almost having a full blown panic attack. She had to wear a mask with oxygen because the nasal cannula wasn’t enough. She is now still using 4 liters of 02 and desaturates with movement. So, it seems the lungs aren’t working super well quite yet. I hope it improves.
Last night was a very hard night, and as expected, Ana had severe insomnia from all the meds, and was in considerable pain, despite the lidocaine epidural and percoset (sic). She kept trying to cough because of her chest congestion, but was in too much pain to cough with a purpose. She would fall asleep for what seemed like hours, only to wake up and see 15 minutes had passed. She did this repeatedly all night long.
Ana was looking wiped out and exhausted today. She also had a bronchoscopy at noon and they suctioned out lots of blood clots and secretions, and she said she felt better, with less gurgling in her chest. But the docs said her lungs looked good, and not too congested.
After a nap today, she seemed a bit more coherent. Never mind her comments, “Are there pink and red pokka dots on the ceiling? Are you sure there aren’t? What about the walls? Really? God, I’m tripping out.”
I brushed her hair, which had become a bit of a rat’s nest. I realize she should have cut her hair much shorter when she got listed, to spare herself and us the pain of combing through massive tangles. Keep in mind 6 year’s worth of cyclosporine doubled the size of her hair volume and 6 months of Prograf has lead to massive amounts of it now falling out in clumps. But it felt so good to be a caregiver. How many times had I been the recipient of such tender loving hands in the chore of grooming. Such a simple task could be so bonding and joyful.This was the classic primate experience, and I felt like a baboon picking off Ana’s hair from her bedsheets.
Half an hour, and several fistfuls of hair in the trash can later, Ana received her “First Supper”. A pile of bland macaroni and cheese and green beans was scarfed down abruptly and as far as I know, it stayed down. Same with a can of Glucerna, a salad and her favorite, carrot cake. Ana’s great appetite proves she is doing better, or at least maintains her infamous Stenzel appetite.
Overall, the signs are all pointing in the right direction that Ana is getting better but she’s still struggling. She says she is in much more pain than her first transplant, and it is too painful to even move. I was hoping she could get up by now. They don’t want to give her too many pain meds because they suppress her breathing. The good news is that earlier in the day, Ana managed to sit in a chair even if she said the nurse “Basically lifted her into the chair”.
The nurses at North ICU are so fantastic, especially Jason, even if he won’t let me take any photos in the ICU anymore. I believe they are trying not to tell Ana too much to minimize her anxiety. I like that approach for now. She does not need to worry. However, the transplant team did tell her how complicated her surgery was and how low her blood pressure was after surgery, when she received dopamine to raise it.
I am doing fine but rather tired. I went to Jazzercise, walked my neglected dog through our local park, rested in the morning and arrived at the hospital by 2pm. I am sorry I missed Kathleen’s and Ryuta’s visits. I am grateful again for Ed’s visit. My parents staying with Ana until the late afternoon, when they went again to see Fred Astaire films at the Stanford Theater. Trent arrived around 6pm to witness Ana eating her dinner. I am grateful that Andrew visited Ana at 5am before going to Southern California for work today, and he stopped by again at 6pm on his way home. How dedicated.
Ana’s doctor said they would transfer her to the intermediate ICU tomorrow, which surprised Ana because she still feels like hell. But this is very encouraging. She will let me know when she is ready for visitors!
In gratitude for all that is well. Ana is strong! Love always, Isa
