The Good ~ The Bad ~ And The Latest Update

The best news is that my husband has been placed on the liver transplant waiting list. The good news is that he is at the top of the list, and one of the first available matching livers (they go by blood type) will be his once they get the infection under control. 

The United Network for Organ Sharing (UNOS) has a scale for patients with end-stage liver disease, called MELD, where 6 is less ill and 40 is gravely ill. The bad news is that hubby's score was 48 yesterday when the transplant coordinator called to let me know he is now on the list. 

I just called the hospital. Debra was there with her daughter and grandson. She told me that they will insert yet another stent or drain this afternoon to try to conquer his very stubborn infection. 

After the procedure, they plan to move hubby to the liver specialty suite on the eight floor, where there is another ICU, and where liver patients will get the best care. It is clear that they are fighting hard to save my husband's life. Today it is two weeks since Kenny and I took him to the ER. So my husband has been fighting hard as well.  

Today is also Faith's 10-month birthday! Happy Birthday to you, you little bundle of energy you!

As for me, I'm exhausted. I fell asleep on the couch with Faith after lunch. This morning, I skipped my walk with the dogs and instead started to go through boxes that hubby brought with him when he retired and moved here in 2011. He has a difficult time parting with things and, although I have wanted to do something with it, I knew it would take forever with him around. 

So instead of moving boxes from the bedroom to storage, I went through two this morning and threw away most of the contents. I have four left, two are nice containers, the other two cardboard boxes. All collecting dust in the bedroom. I know a pristine environment is a must after a transplant, so there's my excuse. But I really think that he would be touched and pleased. 

We were supposed to get some snow today, but after a few rain drops fell during the night, the clouds moved on and now the sun shines from a clear blue sky. If no measurable snow falls here this winter it will be an aberration, said our local newspaper. 

Faith Says: Let's Smell The Daisies! An Update.....

 

My phone rang just as I arrived at the UCLA Medical Center on Wednesday morning ~ a 310 area code, West L.A., where the hospital is located. I always answer those, albeit with some trepidation. It was Elisa, the social worker we were assinged during the liver transplant evaluation last summer. My husband is being considered for the liver transplant list again. (There were a few things he needed to do last year, but didn't, and some conflicts and stuff I don't need to get into here.) When he felt well he also wasn't sure he wanted a transplant, now he does, fortunately he told me so before he became so ill.

It's clear that if my husband survives the infection and sepsis, he will not live for long without a new liver. Unfortunately, his kidneys failed also and I had to give consent to dialysis, which they began on Tuesday. It's a 24-hour type of dialysis that may or may not be permanent. They are giving him much less pain medicine to see if he will fully wake up. 

I talked to him on Wednesday, he looked at me, but I wasn't sure he knew me. So I told him about how Faith spotted her first rabbit, a huge Jack rabbit, and chased it up the mountain. I told him how the rabbit ran, stopped, jumped sideways, and how Faith was so excited, chasing it, but never able to catch up with it. And then I saw a smile of recognition in my husband's eyes. Before he closed them again. 

There was a lot of activity around him on Wednesday, I now believe related to the possibility of a liver transplant. This included a visit by Elisa, the social worker, who needed to confirm who would live with us if hubby came home with a new liver. He would need 24-hour supervision initially. The brothers we assigned last summer will not be able to now, because they are both working again. 

So I called this guy, Tom, hubby's friend in Denver (here watching a train go through the Tehachapi Loop last summer). When he visited then, he said anytime you need me I will be there. So I asked, and he said yes, of course, anything. Then I called hubby's sister, Debra, who is in this with me. She's one of my rocks (I have a few rocks). Debra said yes and recruited her daughter, who can work from anywhere. 

Tomorrow it will be two weeks since he was admitted. Debra said if I have to make a life/death decision, the family will stand behind me, whatever I decide. She would have to help me, I said. After all, she's known her big brother all her life. It is good to have such support from my hubby's family. I know that should I end up alone, they will be there for me. 

I saw this jet this morning and realized that I have not had any dreams of going far, far away from it all. When I was young, I often wanted to escape. Not now, my feet are firmly planted here on this good and sandy earth. And I'm fully present and dealing with everything as best I can.

Wednesday on my way home, I stop at a McDonalds mid-way, to use the restroom, when my friend Rachael calls. "Where are you," she asks. "In Acton, where are you?" She says, "in Mojave, on my way to see my chiropractor in Tehachapi, can I stop by?" "Of course," I reply and hurry home. 

Rachael says she'll pick up a pizza and asks if I want anything. I say beer! I never buy beer now that hubby can't have it. But I suddenly miss it so much. After a while, Rachael arrives with a veggie pizza, a 12-pack of beer, veggies and dip, a pecan pie, and these lovely flowers, with a bumble bee attached, no less. 

I will save that bee forever, remembering a lovely evening with my good friend, so generous and kind. We had a good talk, she is very spiritual and has a wise outlook on life and death. And, of course, she couldn't leave before cutting my hair. A wonderful ending to a day that was both hopeful and not.

Thank you all for stopping by, leaving such thoughtful and kind comments. I know you understand if I don't come by for a while yet. I hope to be able to post more and get into a blogging routine again soon. But who knows what the next day will bring.

No, I did NOT eat the daisies!

Silver Linings ~ An Update

Yesterday, they removed my husband's large breathing tube and inserted two smaller ones. They also removed the sedative that kept him unconscious. When I came into his room yesterday, his eyes were open. He appeared to be in extreme discomfort, however, and was soon given more morphine after which he dozed off. But he saw me and I saw his eyes. 

You may wonder about these not very good and weird looking pictures. I don't seem to take pictures any more. Thinking about this, one day at sunset, I went outside. The clouds were pretty, but I have so many cloud pictures. Then I looked at my juniper trees, picked one and went underneath its branches. Without paying attention to what I was doing, I began to take pictures. The pictures didn't come out well for the most part, but the process stirred my creativity. A very good thing. I will go back some day soon and pay more attention. Junipers are very interesting, and still alive, in this horrific drought.

My husband arrived in the ER in septic shock, a life-threatening condition. The infection that caused this was diagnosed as E. coli bacteria in his blood. Both his liver and kidneys were failing. His kidneys are doing better and dialysis is not needed. But his blood pressure is not working correctly without medicines and he had another episode of irregular and very, very fast heartbeat the night before yesterday. And of course his liver is all messed up. He is now in critical, but stable, condition. Sadly, being more aware, he will suffer more. 

As I was driving through the desert yesterday on my way to UCLA, several people called me to ask if I had watched the news coverage about the super bug at UCLA Ronald Reagan Hospital, where my hubby is. Where he too had a scope inserted, where he too developed a life-threatening infection afterwards. I told them all that I am already extremely angry with the attending physician who released him too early the week before. I feel like I can't add to my anger, I need to keep my anger in check, so as not to waste energy. I need energy to be there for my husband, for whatever may come. 

Because of the super bug, the road to UCLA Ronald Reagan Hospital was saturated with media trucks when I arrived. I asked the doctor in charge at the ICU about the scopes and the super bug. He said my husband didn't have the super bug, he had sepsis, as if that would be an improvement. Then he added, "who knows why your husband got so ill, with his already compromised health and all." So I guess that will be the hospital's take on what happened. 

So how am I, and where are the silver linings here, you may ask. Well, if I were healthy to begin with, I would be doing very well. But I have type 1, insulin dependent, diabetes and after 25 years of keeping it under good control, it is now messing with me, taking over my life, my mind, my body and my general health. For the first time, I'm scared. Stress is the reason I can't manage it right now. 

I understand how my body works, but it is so difficult to administer the correct, not too little, not too much, insulin amounts with a bunch of stress hormones being released at the same time. My insulin pump and test strips are the silver linings here. I check my sugars all the time. I plan to add the results into a spreadsheet I have and then analyze it and hope I can reprogram my pump to better respond to the stress factor. I must work on that today.

You know, all I ever wanted was to have a fun blog, full of pretty nature pictures, silly dogs, hiking in the hills, vegetable garden, and so on. And here I am with all this.

There's a time to live and a time to die, that I know. In between there may, for some of us, be a time of suffering. My husband will really suffer now. I don't feel prepared for the days to come, but I feel my strength, that old Viking woman is alive in me, ready to take on whatever comes.

OK, Silver Linings: Our niece and her husband who live within 50 miles from us (a short distance here) both social workers who know a lot, will drive me to UCLA when they can, and are providing all kinds of love and support. A 50 mile drive through the desert to their house is sooo much better than those last 50 miles in Los Angles freeway traffic and general craziness.

Wednesday, I went to town, to see a friend at her office, just to let her know what happened. A client of hers comes in, hears what I say and comes up and gives me a big hug. So does my friend. Then the other woman tells me I have a big nail in my front tire. 

The tire shop is just down the road. A huge and friendly guy there tells me to wait a minute, arrives with something to remove the nail and check if air is escaping. Well, the nail was super short, not really a nail at all. And the tire was fine. 

Went to Save-on for my test strips and got another big hug from a woman I know there, who knows how sick my husband is.

Then everyone in my husband's very large circle of family and friends are calling. I talked to so many people, I lost my voice. Silver linings: Every single person, including his guy friends, ask me how I am holding up. They ask if I need anything (meaning money, visits, anything), one friend says I can let him know anytime and he will fly in from Denver. About 12 - 15 relatives from the greater Los Angeles area visited him last Sunday and prayed for him, left a card with all their names for him to see when he woke up. 

I still can't believe they let them all into the ICU at the same time. Thinking of germs and bugs being carried in there.......

Then there's Samson who has been an exemplary dog. You could not ask for a more helpful, loving, good and patient dog. My silver-tipped fluff monster, the best silver lining ever.

While Puppy Faith has been a total bad ass. She's like a bad teenager, taking advantage of an absent mommy. She'll be OK given some time, training, and attention. When I cried in bed the other day, she crept up onto my shoulder and licked my tears away. Silver linings.....

My good friends, those I can touch, those I have known for years, and the new ones here in the canyon.

And, finally, all of you my blogger friends, who I can't touch, but whose loving thoughts and prayers reach me through this virtual landscape, touch my heart and help me so much. On the days I am home, I have little time to visit blogs, but I will try. I wonder how you are when I don't visit. So I will try. Until then, stay well.....

A Turn For The Worse

This is to let you know that my husband became worse each day after he was discharged from UCLA Ronald Reagan hospital last Tuesday. Saturday, he became unresponsive. If I had called 911 he would have been transported to a hospital in Bakersfield, where they then would have had to decide to provide transport to UCLA. In his condition he would not have survived this. 

In my desperation, I called our relatives who live about 45 miles away. Our niece Monique and her husband Kenny. Kenny, who has had some experience assisting in medical emergencies and also owns a wheelchair, said he would come immediately. By the time he arrived, my husband was unresponsive. We got him in Kenny's car, drove to his home in Palmdale, where I parked the Jeep and then Kenny drove us to UCLA. 

When we arrived, hubby's BP was 60 over 40, he was brought into a room in the ER immediately, at least 10 doctors and nurses gathered, each knowing what they had to do. They could not get the BP up, so I signed consent forms to do various procedures to help with this. Then I signed more forms. Before I did, I asked if my husband would have died if I had not brought him in. The doctor said yes, most likely.

They diagnosed him with an infection in his blood and his liver. They thought it had to do with the stent the implanted last week. All sorts of other things were also wrong with him, I can't keep it all straight right now.

As of right now, he is in critical condition, but more stable, in the Medical ICU at UCLA. I was completely exhausted by the time we left UCLA late last night. I spent the night in Palmdale at my relatives home. Needless to say, sleep was difficult to come by. I drove home through the beautiful desert morning light, so full of sadness. It is so heartbreaking to see him suffer so. And now I am worried, well almost sure, he will not have the strength to continue to fight this fight. We did learn that the cancer has returned or was never completely gone. Right now, his condition is so dire that the cancer is a secondary concern, nothing immediate. 

I talked to his nurse this morning, he is on a ventilator, pumped full of antibiotics and sedatives, and all the rest of the things they are doing to try to save his life. His sister visited him today. I will drive to my niece's house tomorrow morning and Kenny will drive me the rest of the way to UCLA to visit my husband. I am so grateful for this and for the fact that this happened on a long weekend where I could get some help. 

I wanted to let you know. I am so grateful for your friendship and support through all this. 

The dogs have been worried but so good. They are a great and calming help to me.

And now I need to get some sleep..... 

Another Update

It is six o'clock in the morning here in the California mountains, temperature somewhere in the mid-20s, it's difficult to see without a flashlight. Faith woke me up with ear licks at 4:30, which was good since my blood sugars were low and I needed to eat. Breakfast in bed: Coffee, oatmeal with walnuts, a banana (I can only eat them when my sugars are low, so a treat today), all sprinkled with cinnamon. 

I saw reflections of a sunset the other day and took these pictures. Before I give you an update on hubby, I want to say: Thank You, once again for being there for me, for being so caring and supportive. I have a busy day ahead, so I need to keep this short, not edit myself into perfection, and move on with my day, to do this: 

Walk dogs, vacuum bedroom, dust same, put on clean sheets, duvet, and blankets (washed them all yesterday). Then check oil in Jeep, add oil if needed (yes, oil leak looming), balance check book, write three checks, write shopping list, shower, and change insulin in pump. After that, I will probably eat some lunch, then pack small white trash bags in large black bags, put in Jeep and drive to the trash disposal place, aka the dump, and then the rest of the 15 miles to stores and post office in our town. So that was way too long, already, so on with it.... Why is it so difficult to be concise?

My husband has a place on UCLA's web where they post test results. Yesterday, finally, the results of all his blood tests showed up. And the only problems I saw were related to his liver, one that sounded like it had to do with bile. I became familiar with tumor markers after my bout with breast cancer, so I anxiosly looked for those. When I found them, I was thrilled to see they were the same as last fall. Normal was 6 point something and his was 3. 4. A disclaimer stated that this does not mean there's no cancer, but for now I will take it as a very good indicator. 

If all went as planned he had the video test yesterday. When he first said they were going to video him, I said, "what?" Found out that the scope they insert down his throat will indeed video his liver and other areas of interest. Amazing what they can do these days. 

My husband is feeling much better since he now has a special person managing his pain, which has been so horrible. His voice is stronger, he is enjoying phone calls from relatives and friends, and as it turns out, his new friend Matt from the ER (I mentioned him in my previous post) had a procedure done and ended up in the room next to my husband's, so they had a chance to visit. And Matt bought him a back scratcher as a goodbye gift before he went home.

I have no good pictures of the dogs. Faith looks like the lab cross she is, but has such short legs. She has lost some respect for me because I can't help but giggle at her antics, she's just so hilarious! But now it's getting out of control, so I have started to work with her. Samson was much more serious and just naturally sweet as he grew up. Faith is very sweet too, once she calms down, but her excitement level is about 50 times that of Samson's when he was her age. 

I don't know when my husband will be discharged or when they will do the stent procedure, or/if they will be able to diagnose all his problems. I hope they will be able to heal everything that caused this horrible pain, blockage and anything else they may find. 

One more thing, UCLA's liver transplant team has visited him and discussed a transplant with him. Last fall, he was so overwhelmed with the complexities of it all that he decided he didn't want one. He may have changed his mind. 

And now it's 7:15. so much for a short update! Have a nice day, everyone. 

Notes From The Emergency Room And An Update

As my husband turned more and more yellow and insisted on waiting for his Monday morning appointment with the liver specialist, I turned to Google and, as it turns out, correctly diagnosed him with a bile duct obstruction. Monday morning, Dr. Tong, the liver specialist took one look at hubby, made some phone calls to UCLA, and told us to get over to their emergency room where the liver team would meet up with us and get him admitted. 

Hubby, who knows how I feel about driving in LA traffic, drove us from Pasadena to UCLA past so many familiar landmarks: Dodger Stadium, where we would watch the games, drinking beer and eating dodger dogs; Mount Washington, where my friend Tony, who died of AIDS, used to live and where Elton John would always sing on vinyl records; downtown, where my friend Jane and I would meet for lunch, and one day stood on the street, talking, mourning the totally unnecessary death of Marvin Gaye. On to the Santa Monica freeway, past La Brea, the exit for our LA house, and my many West Los Angeles memory landmarks. But on to reality......

The waiting room at the ER was not as crowded as it would be when I left there eight hours later. They check your vitals and triage you so that the most severe cases are admitted into the actual ER first, a badly designed place that is way too small and does not meet the needs of the community. Hubby's vitals were good so we waited for about three hours before being admitted. 

Just like last summer, he was placed on a gurney in the hallway. I got a chair at his feet. A guy named Matt, suffering from a congenital liver condition and in as much pain as my husband, was on a gurney to the left of me. So there I sat, prepared for a long wait, glad that this time I brought food, hubby's feet to my right, Matt's to my left; big feet, big guy, had played line backer for the Raiders when young. 

So two guys with liver issues and a love of football meet up in the ER, the day after that disastrous last minute of the Superbowl, if you are, as we are, or were (I'm a fickle fan) Sea Hawks fans. So as soon as the morphine they both got was administered, a friendship was formed. It was a delight to watch and made me forget my fears and reduced my stress. 

A very nice nurse appeared immediately, took hubby's medical history, administered morphine, took blood, did an EKG, and so on. A resident soon appeared and asked pertinent questions. The emergency room was incredibly busy, but we felt we got a very different level of attention compared to last summer when I just took him there and no one seemed to know what to do with him. So my husband was right to wait to see Dr. Tong. To have your doctor call ahead make all the difference. 

After my hubby was taken away for an ultrasound, which confirmed the bile duct obstruction, two doctors from the liver team showed up. The head doc was a lovely man, who gave me his card, said I could call anytime, and even put his arm around my shoulder as I sat in the chair. A gesture so lovely, so meaningful, so unexpected. It would be great if more doctors understood how much even the briefest moment of kindness matters. Then they took off to see my husband and look at the ultrasound. 

After that they returned to let me know that my husband would be admitted. While hubby was gone, a women, who looked like an ageing actress with psychiatric problems, arrived on a gurney behind my hubby's space. And the conversations she had with nurses and doctors who tried to figure out what was going on with her (she arrived by ambulance, but evidently her issues were not physical) and what to do with her, became so hilarious that Matt, his wife, and I started to giggle, uncontrollably. I think we all knew this was not a nice thing to do, but it helped relieve our boredom and, for a brief moment in time, forget our worries and fears.

Sorry about this long story, I just feel a need to write down my emotions. I am here at home now, and my beloved husband is over 100 miles away, his voice so weak on the phone. I left the ER at 6:30 and, after a restroom/gas station stop arrived home that night at nine. My husband called right then and said he finally got into a hospital room. The dogs had been very good, considering they were left alone for almost 14 hours. Samson had pooped, they both peed, and Faith chewed up a cover for the couch I had left for her. I knew she would do it, and better that than the actual couch, I figured.

Right now I know about the obstruction, not what caused it. No one mentioned cancer so far, I can't get his test results online, so I don't know what the tumor markers said. Dr. Tong told me I better wait until all the results come in, but it sounds like cancer was not seen on the MRI. Hubby will have stent implanted in his bile duct to make it function properly. He will also have a device with a scope attached inserted into his throat and esophagus. This so they can get a different look at his liver. Sounds ghastly to me, but if it will help to find out why he in so much pain, it is a good thing. 

Again, thank you for your comments. Debra, Breathligher, mentioned how wonderful our blogging community is and how our friends who don't blog can't understand the friendships we form here. Thanks for stopping by, thanks for your support. Hope you all will have a good rest of the week. Will let you know what happens.

Good Books I Read In 2014 ~ Part 1

Looking back on 2014, I see that many of the books I read were unusual, and perhaps not for everyone, while others were classic novels from the 19th and early 20th century with some interesting mysteries thrown in for good measure. I divided the list into two parts. 

The Night Circus, by Erin Morgenstern

Wonderful, magical, mesmerizing, spellbinding and enchanting ~ adjectives I borrowed from an AP review. They describe this book perfectly:

The circus is only open at night and within its tents awaits amazing acts. This is the story of two young magicians who have since childhood been set up and trained for a duel where, unbeknownst to them, only one will be left standing. The two meet and fall in love, which sets off serious and dangerous consequences for everyone from performers to patrons of the circus. This is a marvelous book, my favorite of 2014. 

My Antonia, by Willa Cather

"No romantic novel ever written in America...is one half so beautiful as My Antonia." ~H. L. Mencken

I am sure my American friends are familiar with this book, so beautiful, so marvelous in its simplicity.  You feel, smell, and see nature in your mind through all its seasons. You live with Antonia through her harsh childhood of poverty and family tragedy; you are happy for her as she becomes a wife and mother on a Nebraska farm. This book honors the spirit of America's early pioneers and celebrates the vast landscape of the American mid-west. 

Russian Winter, by Daphne Kalotay

Now old and living in Boston, a former Bolshoi Ballet star puts her fabulous jewelry collection up for sale. As she goes through it, each piece reminds her of Russia and of her life of dance, love, fabulous gems, dangerous politics, betrayals, and long kept secrets. I found this book absolutely fascinating. 

Middlemarch, by George Eliot

Always found on the lists of the 100 best books ever, Middlemarch finally made it to my Kindle last year. I enjoyed the interwoven stories of romance and gossip in the English countryside and I felt sad for the main characters who made such horrible mistakes in marrying persons so wrong for them. The book is filled with many characters and stories, all intertwined. With the tools available at the time, I can't help but wonder how the author kept track of them all. 

And then there's the English language, so beautiful the way it was written in the 19th century. Since Middlemarch is a very, very long book, I got to enjoy it for a long time. One of the best books ever.

The Invention of Wings, by Sue Monk Kidd

Loosely based on the life of Sarah Moore Grimke, an abolitionist, writer, and member of the women's suffrage movement, it tells the story of Sarah and the slave, Handful, who was given to Sarah on her 11th birthday. Sarah didn't want a slave, but had no choice; Sarah wanted to become a lawyer, but had no choice there either. This is one of my favorite books of 2014, a beautifully written story of two women, their struggles with oppression and the horrors of slavery.  

I read in amazon.com reviews that apparently there's a version of this book that includes distracting notes by Oprah Winfrey. I bought the Kindle version, which does not have the notes. 

The Stars Bleed At Midnight, by Roland Yeomans

In this sequel to Death In the House of Life, the adventures of Texas ranger Sam McCord and his companions continue in the deserts of 19th century Egypt. Sam, his wife Meilori and old friends Samuel Clemens, Oscar Wilde, Ada Byron, and Nikola Tesla set out toward a destination that holds a very different meaning for each of them. Along the way, they encounter strange and otherworldly characters, some undead, some sinister, others not. Roland Yeomans novels are poetic, his English is as beautiful as any you will find in a modern book, and his imagination knows no bounds.  

Part two will follow soon.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On a personal note: Things are not going well here. My husband has become very ill in the past week. We are seeing the liver specialist tomorrow and will find out the results of his MRI then. 

I am not dealing well with this 'not knowing business' and know I will do better once I know what is going on. Reading online, he has symptoms of bile duct obstruction, but who am I to tell, could it also be liver failure, cancer return, HepC flare up.....

Last time the oncologist said if the cancer returns they can treat it again. 

Thanking you all in advance for the good thoughts and prayers I know you will send our way. Will let you know.