Journal

Journal entry by Charles Ellis

We are into the fourteenth month since Kate's bleed September 28th, 2018. She's had victories: the stent in her superior mesenteric artery. The feeding tube. Her weight now stable above 100. All wonderful.

The continuing problem has been her lungs. She's on oxygen 24/7, can't walk far, has little energy. There was, too, a new bleb in her May c.t. scan that was that most ominous of words: suspicious. Our first encounter with pulmonology was at Colorado Pulmonary Intensivists. It didn't go well for a variety of reasons, so Kate asked for a second opinion from a National Jewish doctor.

Dr. Taryle. Saw him in September. He wanted another couple of data points before proceeding. Another pulmonary function test and another c.t. Those were done in the past couple of weeks. Saw Taryle today.

The pulmonary function test showed mild impairment. Only mild. Good news. The c.t. scan was unchanged from May. That's six months. The bleb is probably part of the scarring process. Her lung disease is stable. He sees no need to do a lung biopsy at this time. Kate was happy. She's a high risk candidate for the surgery.

He also sees no need to prescribe any medication for her since the few drugs, mostly new, for fibrotic lung disease all have nasty side effects. The benefit/harm ratio is not sufficient to make treatment a good idea.

We left, scheduling another appointment for March. The lung biopsy is off. Kate feels relieved about the status of her lungs. Me, too. Now we just have to get used to this unusual situation.

Not only did she have successful cataract surgery on both eyes in October, her lung disease now seems mild and stable!

Unless things change, this will be the last update until next March.
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Journal entry by Charles Ellis

Kate's lung biopsy has been scheduled for November 18th. Dr. Guber thought the new bleb, nodule, in her lung is most likely part of the scarring process of her lung disease, not a malignancy. A ct scan scheduled the first week of November should tell the tale.

Her weight is consistent in the 100 pounds + or - 2 pounds range. Her spirits are good after the yucky days she mentioned below. We had lunch yesterday with Susan Marcus and dinner with Jon and the grandkids. A good day. We preceded her presentation on joy last week at Congregation Beth Evergreen with a commitment to finding the joy in the every day here. We've kept at it and have found it a good soul practice.

The feeding tube has matured. Her nightly feedings maintain her weight baseline while assuring her of good nutrition. More when there is more.

Journal entry by Charles Ellis

I have had a string of really yucky days recently.  We missed Rosh Hashanah while I was getting yet another chest CT.  Kol Nidre will be a pass too.  I will marshall my energy for tomorrow morning services.
I am being seen now at National Jewish by Dr David Taryle.  The consensus is that I will need an open lung biopsy for diagnosis and treatment.  To that effect I am seeing a Dr Guber,a cardiothoracic surgeon, on Thursday.  The most recent chest CT showed a new nodule in the upper right lung.  One more thing to worry about.  Oh well, I will ask Dr Guber what his opinion is and what he recommends.
I also went to the eye doctor with some concerns about my changing vision.  Turns out that I have cataracts.  I am scheduled to have the first removed on 10/16 and the second on 10/30.  We will see! No pun intended of course.  The shit just keeps getting piled higher and deeper.
One good thing about these nasty days is that I am getting a lot of reading done.  I have nearly finished all of the Foundation novels by Isaac Asimov.
Charlie and I are working n the soul trait of joy, trying to find something joyful every day.
Not always easy.
Other breaking medical news....grandson Gabe had a small bowel obstruction.  Initially it was thought to be swallowed magnets.  But nooooo, he had swallowed a rubber glove,!!
He says he “can’t remember it.  He had a successful surgery to remove it and get everything flowing again.
Charlie has successfully completed his radiation treatments and is slowly getting his vigor back.  He is still on Lupron, a testicular blocker.  It causes hot flashes.  I recommended he stand in front of the AC (or the open freezer door)and flap his shirt. IMO everyone needs to experience at least one hot flash.
I am going to lie down and read some more.  Hope to see you tomorrow

Journal entry by Charles Ellis

After we got back Monday from the c.t. scan, around 6 pm, we were tired. Kate went to bed around 7. "Charlie, I need help!" Her feeding tube had popped out. Right out of her body. Kate being Kate, she plugged it with a Foley catheter (a #16, she said.) After a call to the on-call doc at our internists, he said to call her surgeon, "U.C. (urgent care) doesn't know what they're doing." In the a.m. she called Ed Smith, the surgeon who inserted the feeding tube. Out with a total knee replacement. Sigh.

We went to the E.R. A new feeding tube. Better. But. Her shortness of breath continued to be problematic. We saw Doctor Gidday, our internist, yesterday. The c.t. showed a new nodule on her lung. Dr. Gidday prescribed a steroid burst for the shortness of breath. She also gave Kate the number of a cardio-thoracic surgeon who can do her lung biopsy. This is the final step in the lung disease diagnosis.

Unfortunately, interstitial lung disease has at least two broad families of very different etiologies. The etiologies matter because how you treat them depends on their diagnosis. That means tissue samples and the lung biopsy is the only way to obtain them. Not sure whether this would include a look at that nodule or not.

It's been a very tough week for Kate. I'll let you know when we know more.

Journal entry by Charles Ellis

Kate's shortness of breath has become worse over the past three days. She felt similar to the time before her last hospitalization which found a pneumothorax (collapsed lung). We did a round of doctors and imaging scans yesterday with nothing definitive. Workups will continue today.

 Her progress with her weight (thank you feeding tube) and Sjogren's has been great. Glad she's stronger now.

Will let you know as things develop.

Journal entry by Charles Ellis

It was one year ago when I took Kate into the Swedish E.R. It's been a tough year, but she's consistently above 100 pounds, getting around more, driving on her own. Smiling more. Laughing more.

Kate had an abdominal ultra sound this week and it showed that her stent is still in place and functioning correctly. The lung disease puzzle still has no solution. The new National Jewish pulmonologist, Dr. Faryle, has Kate on a path to a solution. She likes him. I'll let you know when we know.

Journal entry by Charles Ellis

Though a definitive diagnosis is still a ways in the future, Kate feels much better after seeing Dr. Taryle of National Jewish Hospital. This nationally renowned hospital specializes in respiratory illness. She felt Taryle talked to her, told her what he thought. She'll have a new pulmonary function test, then a second CT. "To establish one more data point." After that, probably a lung biopsy.

I'll keep you up to date. Otherwise her weight has stayed consistently above 100. Her energy and stamina are much improved. In 13 days it will have been one year since her bleed that took into the E.R. and started this whole difficult year.

Journal entry by Charles Ellis

Hi, All,

Kate's 75th birthday is on the 18th, Sunday. If you're able, I'd love to see you send her a card. I know many of you won't be able to and that's fine. But. I'd sure like to flood her with cards for this three-quarters of a century. She doesn't feel like going out, so we'll do something here at home. Maybe opening your card?

She's doing well. At or over a 100 pounds most days, cheerful and joking. Stamina continues to improve and she continues to take back parts of our life that she's now able to handle. We're almost 11 months past her bleed now.

Here's our address:

9358 Black Mountain Drive
Conifer, Co.  80433

Thanks for paying attention to her progress over the last few months. It's helped her enormously.

Journal entry by Charles Ellis

Hi,

Forgot that most of you don't know about my cancer. I had prostate cancer diagnosed in 2015, my prostate came out, and all was good. Until it wasn't.

My PSA began to rise early this year. Not supposed to happen with no prostate. Flurry of activity, doctors, imaging studies. Conclusion: my prostate cancer had returned. Good news: no mets visible in either a bone scan or a ct of soft tissues.

I began a 35 session radiation protocol on June 17, the day after Father's Day. I'm done on August 6th, the anniversary of Hiroshima. In addition, on June 18th, I got a shot of Lupron, a testosterone suppressor. Both can have significant side effects, but so far, two weeks in, I feel fine. The Lupron shots will continue for at least six months. If I tolerate it well, perhaps as long as two years. Every 3 months.

The aim is a cure. I'm in favor.

Journal entry by Charles Ellis

On Thursday night, Sept. 27th, Kate began bleeding. She wasn't worried too much and decided to wait until morning. In the morning, around 6 am, the bleeding continued. "Take me to the emergency room." We both agreed on Swedish in Englewood.
They stabilized her. The bleeding didn't stop and her hemoglobin was low so she went to a hospital room. (8123, where she still is.)
After several tests including a colonoscopy and nuclear imaging, an embolization of the bleeding was attempted, but failed. Since her blood loss continued, 8 transfusions by that time, Kate and her docs agreed that bowel resection was necessary. That happened on Sunday afternoon.
Imaging of bleeds in the bowels is more art than science, so the surgeon removed what he hoped was the right segment.
Yesterday (Monday, Oct. 1) she was in pain from the surgery, no pain before, and really confused. Her hemoglobin was better.
However, it dropped some later in the day and continues a bit lower than we want. Both the hemoglobin has to stabilize at a safe level for her and her bowels need to restart before she can leave the hospital, maybe as much as a week to ten days. 
I'll see her again this afternoon and post an update then. I'm sure visitors would be good for her, though she may be asleep, of course.
Kate’s Story

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