Journal

Journal entry by Charles Ellis

I said I'd give a last shoutout when Kate hit a hundred pounds. Today. She was 77 at her nadir. She's excited and so am I.

Her stamina has been improving right along with her weight. She drove my sister back to the airport yesterday because I had my radiation treatment at noon. The day before she drove to Littleton and picked up our Akita, Kepler, from the dog groomer. I'd taken him on my way to Anova Cancer Care. She walked all the way back to the groomers, no Rollator. She doesn't use it at all now.

Not sure what's around this corner but she's sure turned one.

I also promised an update on a lung diagnosis. Sort of a half note here. Kate saw Gupta on Thursday. Her weight gain, stamina improvement, and general spirit impressed him. He said he didn't want to do the lung biopsy right now because it might interfere with her positive momentum. Fair enough. He meant, we think, that any lung disease she has is not serious enough to justify surgery and anesthesia, both required for a lung biopsy. On the other hand, that means there's still that uncertainty. Don't what we'll do with this one yet.

Journal entry by Charles Ellis

Not quite to a 100, 99.4, but I felt a need to update you all. Kate's stamina has improved markedly. On Thursday she went to an afternoon class at Congregation Beth Evergreen, came home, and later went back to a board meeting. Last night we attended the Gospel Shabbat which involved standing, foot stomping, and clapping. We stayed into the oneg, the after service food and conversation.

Kate's a different person that she was even a month ago. The TPN and now the j-tube are mostly to thank for that. The j-tube is giving her some fits right now as she adjusts to using it at night (the tubing connections are not as secure as they need to be), but we'll figure it out.

Journal entry by Charles Ellis

Kate's pic line got pulled out just before she left Littleton Adventist. No more tpn.

We took home several small bottles of Jevity, a liquid nutrition source which will replace the tpn bags. This is a ten-hour feeding regimen, one she can do all or almost all while sleeping and reading. Also, she manages this one herself.

This is, for now, the end. When she hits a 100 pounds, I'll send up a flare. When the lung disease comes back on the table, likewise. But, for now, as in the newspaper biz:

                                                          -30-

Journal entry by Charles Ellis

Kate had her j-tube put in today. The operation was a success and she had no respiratory problems at all. When I left, she was alert and happy to have gotten this far.

She'll stay there at Adventist overnight to make sure no problems crop up, but I don't think they will. She'll have a contrast procedure of some sort to be sure the feeding tube works. Feels like we've reached the end of one part of this journey, the one focused on weight loss.

Next will be her lung diagnosis, but she has to be finished with her recovery.

Journal entry by Charles Ellis

The TPN has been wonderful. Kate's up to 97.4 pounds now! A full twenty pounds more than her nadir. But the TPN is fussy and potentially dangerous. Infection. It also adds another set of tubing for Kate to schlep. She needs nutritional assistance that she can use for the foreseeable future-the j-tube.

Those of you who have followed this medical narrative for a while know that it has several plot threads. The bleed. The stent. The second bleed. Pneumothorax. Weight loss and Sjogren's combined. TPN. Potential lung disease. The question of Kate's fitness for surgery.

The j-tube entered the narrative some time ago. Today Dr. Smith, the surgeon, gave Kate a date for the j-tube: June 3rd. We're both excited.

Once the j-tube is in place the remaining challenge so far unaddressed is lung disease. Once she's healthy post-op, she'll get a definitive diagnosis from Gupta and some treatment, probably from her rheumatologist, Dr. Westermann.

This feels like genuine progress to both of us.

Journal entry by Charles Ellis

Kate's weight is moving on up.

Finally saw Gupta today, six weeks after Kate's high res CT scan. Not sure what happened in the interim. He said his folks had been trying to call us. Hmm?
Anyhow. The CT shows some inflammation and some scarring. The scarring is fibrosis and not amenable to treatment. Just how much of each can only be solved by lung biopsy.
It won't happen soon. Gupta gave the go ahead for the j-tube placement and we have an appointment on May 21st with the surgeon. Gonna get scheduled.
Can't do the lung biopsy with the j-tube placement because the folks at Swedish gave Kate a steroid burst which she finishes today. That calms down the inflammation and makes a biopsy pointless until it has cleared the system, usually four weeks or so. However. The fact that she got better on the steroids suggests that an inflammatory process is a major part of her lung problem. That's good news because, unlike the scarring, it's treatable.
Out in the future there's treatment for a dilated esophagus, too.

Gupta said Kate looked as good as he's seen her. She does. Her color is better, her stamina is better, her weight's up, and life is more fun for her. We're making good, consistent progress.

Journal entry by Charles Ellis

Kate's doing better. Her weights still up though she hasn't weighed herself this week. Her TPN feedings have been very good for her. Her stamina continues to improve. Yesterday she went to her needleworkers group, leaving here around 9 and returning around 2:30, tired, but not exhausted. She took her rollator with her but didn't use it. She's doing more of that. She's laughing. Joking. She loaded the dishwasher the other day; she's still doing the dog's second feeding.

We see Gupta, the pulmonologist on Monday morning. She still needs a diagnosis for her lung disease and she still needs a go ahead for her j-tube placement. Hopefully both of those on Monday. As we move into the growing season, I'm hoping her continuing recovery follows the season's energy.

 

Journal entry by Charles Ellis

Here on Shadow Mountain we have the stirrings of a new awakening for Kate. She's gaining weight, eating more. She's also started, again, bringing up things that need to get done. Just before I go to sleep. Hmmm. We have a way to defeat her anemia and a plan for continued weight gain. When the lung diagnosis is complete, we'll have a treatment.

Her spirits are much improved, too. She's taken back the second feeding of the dogs and now creates a menu plan I can use to plan our meals. Very helpful. Feels like we've pushed past the mid-point of this journey. I sure hope so.

Journal entry by Charles Ellis

Some of it might be water retention from the prednisone burst Kate's on after her recent hospitalization, but not all. The weight gains are real and increasing. Also, she got her labs back from her Monday blood draw. Her hemoglobin is 10.5. Blood, one unit in the hospital, and an iron infusion. Blood and iron turns back her anemia. Progress on two fronts.

We need solid plans for continued weight gain after the tpn, probably the j-tube, to counter her anemia, looks  like blood and iron works, but can we convince someone to order it, and for the interstitial lung disease. We're getting closer to ameliorating or solving the worst of Kate's medical issues. We're both cautiously optimistic, a significant advance over we'll wait and see.

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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