30 July 2013

Permission For a Limited Time

Late Monday afternoon, Ford received permission to work from home for 2 weeks. This was great news! We hurried over to BYU to retrieve the necessary equipment he would need in order to do the work that needed to be done.

Bright and early Tuesday morning, Ford was up and raring to go. Within a short time, he was up and running. So, his computer is able to communicate with the computer on his BYU desktop and the person he is training is able to sit at his desk and they can work on the same thing at the same time and see what each other is doing. Our landline is on set to speaker and they work a full day, everyday.

Ford is very content and happy being able to do his work. BYU has been very gracious to allow him to do this.

Now, we are working to keep him well and recovering. Our target is to make it two weeks until his next appointment with the pulmonologists. At that time we will be able to see if there is any improvement in his chest x-rays.

So aside from having the landline tied up all day and Ford talking constantly for hours, everything is progressing in his favor. He is gaining weight, his breathing is improving, and he has been able to begin to ride his stationary recumbent bike to gain some muscle.

29 July 2013

Requesting to Work from Home

On the way home from Ford's appointment at the U of U pulmonary clinic, we went to his office at BYU to speak with his supervisor. We were able to visit with Ford's supervisor and explain what was happening. Then we asked if it would be possible for Ford to work from home. During his chemo treatment four years ago, he was allowed to do that. This kept him doing his job, servicing the accounts for which he is responsible. In order to allow him to recover from the pneumonia, we were trying to minimize the exposure to environments that could trigger an infection. There has been a lot of construction on campus very near his office area. If this could possibly be a factor in the reoccurring pneumonia, we wanted to remove him from that risk.

Ford's supervisor was very kind, listening to all we explained. He told us that approval to work from home is now an administrative decision, meaning that he would check with his supervisor so the request could be pushed up the chain of authority. He made an appointment with his supervisor for all of us to meet together the next day.

In meeting the next day, we learned a little more about the process and what may or may not happen. Currently, if granted permission to work from home, the most that would be allowed would be 2 to 3 weeks. We were hoping that Ford might be able to recover for the 6 to 8 weeks that we had been told it would take for a normal case of pneumonia to clear up. However, 2 or 3 weeks is better than none, so we asked him to continue with the request. Since the 24th of July in Utah is a holiday, most everyone needed to further the request was on vacation until at least Friday. We most likely would not receive an answer before Monday of next week.

So we went home and hoped for the best. Ford enjoyed the holiday, then made the decision to take the next few days off until we received an answer.  We also took the time to discuss alternate plans if the answer came back as a no.

It had been suggested that spending time on a beach, at sea level, in clean air would do a lot for Ford's recovery. Since we have family in Southern Cal, we discussed the possibilities as well as the probabilities. We will see.

22 July 2013

Good news, Bad news, and Options

Monday dawned and it was a beautiful morning. The traffic on the way North was less than many times we have made the trip. We made good time, found a parking space (actually, there is valet parking at the U of U Med Center so that was easy), and went to the Pulmonology Clinic. After the initial paperwork and check-in, we went over to Radiology for a chest x-ray. Then back we went to the Clinic to wait for our turn with the Fellow Doctor. The nurse that called Ford's name and did the weight, bp, temp, and all was a little older, a bit feisty, and all-in-all very pleasant. Once our doctor came in and began talking, it seemed like the feeling of anticipation of the pending good news mounted. He asked several "pulmonary" questions. Then turned to the computer screen. As he looked through the records and listened as Ford related to him the events of the phone call from the previous day, he gave a "hmm" and then paused and frowned. He hemmed and hawed and mumbled something about "that shouldn't have been done." Then he turned to us and said, "Well, there is good news and bad news. We will go with the good news first. The serology reports did show that, yes. there were a positive results on two cultures, the Microplasma and the Chlamydia. However, the positives showing are antibodies which mean that it possibly could be something current. Yet it also could be showing something from as far as 30 years back. It just shows that Ford HAS had these, not that he NOW has these."


"And, the comparison of the chest x-rays taken today with those from a week or two earlier actually show no improvement."

Well, that was definitely not what we had been expecting.

The doctor then did say that normally it does take 6 to 8 weeks for a chest x-ray to show any improvement or difference after treatment. And, that it probably was premature to do a follow-up x-ray so soon after Ford's release.


The doctor then talked briefly about options including perhaps doing a round of steroids to see if the lungs would clear. For Ford, steroids is not an option he wants to do. He dealt with Prednisone with the Chemotherapy and refers to it as "the superman drug" because he felt like he could do anything while he was one it and didn't sleep during the time he was taking it. The doctor then said that he wanted to consult with his Attending Doctor and that he would be back, most likely with her.

We waited and briefly talked about the results we had just received.

The Fellow Doctor returned with the Attending Doctor who reviewed with Ford what results were showing. She then talked about pinning down exactly what the cause(s) of the reoccurring pneumonia might be. She talked about repeating the bronchoscopy, this time taking a tissue sample. Here is when the Fellow Doctor spoke up and said that they made a poor choice not taking the tissue sample when they had performed the previous bronchoscopy (with a different Attending).

The Attending Doctor said that a bronchoscopy has a 70% yield meaning 70% chance of showing exactly what the cause is. She explained the procedure and what would be done to gather the tissue and the locations from which they would take tissue. http://en.wikipedia.org/wiki/Bronchoscopy

The second procedure she talked about was a CT guided biopsy done with a core needle and is spot directed. She then said that since it was so specific, it wouldn't be a good choice in Ford's case.

The third procedure is a Video-assisted thoracic surgery or VATS. This procedure has 100% yield and would definitely give results of what the cause is. http://www.health.harvard.edu/diagnostic-tests/video-assisted-thoracic-surgery.htm

She also talked briefly about an Open-lung biopsy.

She told us that she would be doing the bronchoscopy if we chose to do that procedure. If Ford were to choose the VATS, then a very capable thoracic surgeon would be performing the procedure, and that surgeon happened to be her husband.

This is the direction that we could tell they preferred to take, to get some definite answers sooner rather than later. She said that the risks are minimal... of course, there are always risks with a general anesthesia. The most common risk is bleeding. And Ford's blood clotting factor (Factor IV Leiden) could actually be a plus, unless he throws a clot. The other risk explained is an air leak, caused if the lining of the lung should get nicked which then results with a collapsed lung. No problem, they would simply insert a tube to re-inflate the lung and the recovery time in the hospital would be longer.

The other thing that the Attending did, was she could not believe that Ford had passed a walking oxygen test before leaving the hospital. She wanted one done in the office which included some stairs. The Fellow assured her that he had passed the walking test before, however, she still insisted she couldn't believe he had.

We asked for some time to talk over the options we had been given, so the Attending left the room. The nurse who had helped before came in to get Ford for his walking test. It gave me some time to try to process the information.

When Ford returned, the Fellow came back into the room smiling and said that he had really made a definite statement with his walk. That not only did he walk, but the nurse had taken him up to the 4th floor (the clinic is on the first level), and that his oxygen levels were great. Then he told us that he would he needed to go on  his rounds but wanted to know what we decided to do before he left.

Ford and I talked for a few minutes and then decided that we would choose a different option all together. Ford wanted to go home and spend two week recovering without any meds or tests. He would see if he would be allowed to work from home and minimize any outside contact and give his lungs a chance to heal on their own.

The Fellow seemed surprised and let us know that in the case that any symptoms should reoccur, we were to bring him back to the U of U Emergency Department. At that time, the VATS would then be the only option. And that Ford would most likely be admitted to the Huntsman Hospital.

Ford acknowledged the risk he was taking, we made a follow-up appointment and came home. We both felt good about giving his lungs a chance to recover on his own.

Next stop... BYU.

21 July 2013

"Excuse me, would you repeat that please..."

Sunday morning, Ford was resting comfortably.  He was told avoid large gatherings of people, which obviously would be Church. Since he was doing well, I decided to go to as many meetings as I could. It's been a while and I've missed going to all the meetings.

In the middle of Relief Society, our last meeting, I receive a phone call. I quickly left the meeting to answer the phone. The voice on the other end was speaking rather fast and with a different accent so was difficult for me to understand. I asked him to repeat what he had said.

He identified himself, asked for Ford, and when I told him that he was not currently available, he went on explaining that "Mr. Ford has recently been at the University of Utah Medical Center with a case of pneumonia" and outlined his whole file. Not once did he ask me who I was. He identified himself and said that one of the many, many tests that had been run on Ford had finally come back with a positive. From there he talked about why it was positive and how they identified it. In split second processing, I am trying to discern what he is saying, why he didn't ask who I was, and why is he outlining Ford's whole medical situation to me.... and trying to understand the medical terminology he is spewing out. I finally locked in on, "The diagnosis is.... and he needs to be on an antibiotic...." I spoke up at this point and said that he had just finished a course of antibiotics just last night, to which he replied, "Well he must take another course of 9 days...." He asked which pharmacy we used and what address. At that point, two friends/neighbors/nurses from the Ward had stepped out in the hall to see if they could be of help to me. I asked the person on the phone if he would repeat the diagnosis. When he told me again, I did a double take and repeated the name back to him. He said that this was correct. I said the name again so that the two nurses could hear. They both got a funny look on their faces, looked at each other, then back at me and nodded okay, that they understood. I asked the man to spell the name. Yes, he really had said what I thought I heard: "Chlamydia." Again I looked at the nurses who were both still looking puzzled, yet smiling. I said okay to the man and hung up.

As I looked at my friends, I said, "Isn't that an STD?" They both chuckled and said, "Yes." Okay. How did he get THAT and how did it get THERE?

All of those questions were secondary to the elation I was feeling that something was finally turning up positive. Maybe, just maybe, we were going to make some progress and get some answers.

So, I went home and did what I usually do. I began doing some research on the computer. Wow! What a wonderful thing information is! Specifically the following article: "Chlamydia pneumoniae not caught like you thought," http://www.mc.vanderbilt.edu/reporter/index.html?ID=779.
I found myself described exactly as the article unfolds:

"Say Chlamydia pneumoniae and before you get to pneumoniae most people think of a sexually transmitted disease."
"As soon as people hear the name Chlamydia their ears shut down," said Dr. Charles W. Stratton, associate professor of Pathology."

Umm, yup, that would be me.

In my defense, the person on the phone call never said pneumoniae, at least to where I picked up on it. To continue:

"They either don't hear or don't understand the second part - pneumoniae. They think of Chlamydia trachomatis, a common cause of sexually transmitted diseases. Chlamydia pneumonia is the one that's not fun to catch."

The Chlamydia pneumoniae (C. pneumoniae) organism, first described in 1988, is not the sexually-transmitted type. It is an airborne organism that you get from breathing after a person carrying the organism has coughed."

When Ford and I talked about this a little later, we both felt some hope of progress. For one of the very few times, we actually were looking forward to the follow-up checkup with the pulmonogists at the U of U the next day. (-:

20 July 2013

"You have won an overnight at the U of U Med Center"

Monday, we received instructions from Ford's oncologist to go to the Emergency Department at the U of U. With chills, coughing, high fever, elevated white blood cell count, pain in left lung, shortness of breath, and tachycardia, the ED doctor declared, "You have won yourself an overnight stay...." This stay was extended a bit.

Ford has spent last Monday through Friday at the University of Utah Medical Center in Salt Lake City. He has been fighting his third case of pneumonia since February 2013.

He has responded very well to the three antibiotics administered to him. The around-the-clock oxygen was a huge help in breathing. He endured the heparin and lovenox injections (the one instance that he openly admitted that having a little more fat in the stomach area would be advantageous). He has had three IV's in four days due to infiltration. A fourth was attempted but his veins played hide-and-seek by rolling and disappearing. Because he had completed the IV antibiotic treatment and was on oral meds, the tech and the staff agreed to give him a break as long as he didn't develop any fever overnight. An exuberant nurse declared that if needed, they would use an intraosseous infusion (if curious, click the link for a definition, because it is too much for me to describe here w/o getting queasy). She was a new nurse to the week's rotation and made it sound like a threat for lack of willingness to comply (like Ford had a choice if his veins would cooperate or not. Ha). He did okay. Came close in the middle of the night, but made it through. Ford has done well with the incentive spirometer which he calls "the game that sucks" (one of his most favorite puns), and has been diligent with the therapy. While it generates a fair amount of coughing, Ford feels that it has helped increase his lung capacity.

And, Ford also decided that the hospital food was pretty decent. We were told there is a Chef on staff.

The doctors and specialists are working to find out what is behind this unusual pattern of reoccurring illness. He has been seen and examined by Doctors, Residents, Fellows, Assistants, and medical students from Internal Medicine, Hematology, Pulmonology, Oncology, and Infectious Disease (there is probably an -ology for that last one, however, with the continual flood of unfamiliar medical terminology we have experienced this week, what say we just leave it at that). He has been tended to by nurses, CNA's, respiratory therapists, dietitians and everyone's favorite...  phlebotomists. There has been quite a variety of people coming and going. We even got visits from a plumber and an electrician (not associated with Ford's illness).  (-:

Ford came through a bronchoscopy well. Fluid samples were collected and the area irrigated. The decision was made by the pulmonologist during the procedure not to collect a tissue sample at this time.

Labs (blood tests), specimen, cultures, smears, stains, and the like have all turned up negative, which is good in that he doesn't have any of those infections or diseases. They know a lot of what it isn't. What they freely admit is that they don't know what "it" is.

Is it typical or a-typical, infectious or non-infectious, bacterial vs. fungal vs. viral? Is it cryptogenic organizing pneumonia (COP) or bronchiolitis obliterans organizing pneumonia (BOOP)? It responds "here", but isn't following the norms "there." Could the ground-glass opacity indicate a form of hypersensitivity pneumonitis? Is a lung biopsy going to be required to determine a diagnosis?

What we do know:

-We have observed that the pattern for Ford has been illness, treatment, recovery, work, relapse. He has tried to work when possible, a few hours on a few days. He gets to feeling better, gains some energy and stamina. He is able to make it to the office half days and then full days. Within two to three full days of work, he gets slammed with symptoms and diagnosis of pneumonia.

-We know that Ford has had phenomenal care this week. Without exception, the caregivers have been kind, courteous, generous, intelligent, good-natured, and wonderful! Since no one will be working on his case through the weekend and no results from cultures will be back until Monday, Ford was released for "good behavior" to come home and recover (as long as he returns for a followup with the pulmonologists on Monday).

-Ford received instructions to stay away from work (not difficult on a weekend), large gatherings of people, i.e. Church meetings, anyone with any illness, and anyone with compromised immunity.

-We have heard continued doubt expressed that this is being caused by a cancer.

-We learned that the typical time frame for lungs and body to recover from most forms of pneumonia is 6-8 weeks.

 -Ford maintains his sense of humor by sharing, "What color does rain make on a hot tin roof?" and "What do we do with chemists when they die?" and "What do you call a fake noodle?" riddles. 
And with puns: along with "the game that sucks" mentioned before, he asked the nurse that "if he were to toss me the soap, would he be passing the bar?"
And quips: "The best way to get rid of cancer is to get a second opinion" (referring to when he was initially diagnosed with 3 forms of cancer and ended up with only 2), and "So you are considering, what could be for me, a life-threatening procedure, in order to track down a life-threatening problem?"

-And lastly, if anyone asks Ford how he is doing, the answer is... "TERRIFIC." (of course)   :D