Tuesday, May 26, 2015

What we've got here is . . . failure to communicate.

Today's post will be an update on Mom, followed by the always exciting monthly blog stats at the end. The record six-month dry spell without any new countries visiting the blog (twice as long as the previous record) finally ended in April. It did not end quite like the recent dry spell in Texas ended, but it did end nonetheless.

As I mentioned in the previous post, now that Mom is back on the list for a kidney transplant she has to be evaluated annually by the pre-transplant group. She had an appointment on March 25, and when they were going over her medical records we realized there has been some miscommunication over the past few months, hence the title of this post (borrowed from the excellent 1967 movie "Cool Hand Luke," starring Paul Newman).

There were two obvious examples of miscommunication uncovered during this appointment, one of which was really upsetting.

The first miscommunication was that the pre-transplant group was not aware of Mom's GI bleeding episodes in 2014, when she was hospitalized on three separate occasions. I know I informed Mom's coordinator about those, and I found the emails I sent to her for two of those hospitalizations, telling her when and where she was hospitalized and giving the doctors' names and phone numbers. I never got replies to those emails, so I know going forward that I need to follow up those emails with a phone call.

The second miscommunication was a much greater concern than the first one. You may recall that Mom was hospitalized overnight this past Christmas Eve due to chest pains and an increased heart rate (http://fibrinogenamyloidosis.blogspot.com/2015/01/happy-new-year.html). She had a chest x-ray, EKG, and a chemical stress test during that stay. No abnormalities were found and she was released the following day. Well, we only thought no abnormalities were found. At this March 25 appointment with the pre-transplant group she was told that the chest x-ray showed a spot on her lung, and they asked her if she had seen a pulmonologist about that. No, she has not seen a pulmonologist about that because the hospital did not say anything about it. My sister Amy was there with her when she was brought to the ER until she was admitted, and I picked her up when she was discharged the next day. Amy did not hear anyone say anything about a spot on her lung, and I know I looked over the discharge papers and there was nothing about it there. So now we have something else to worry about in addition to the heart palpitations. Great. Here is a chronology of events that occurred during the next few weeks as we tried to address that:

March 27, 2015 (Friday): I accessed Mom's online medical records at the hospital where she was admitted an Christmas Eve, and I could get the written reports but not the images. The written report on the chest x-ray did say there was a 10 millimeter spot on one lung, and a few other spots that were considerably smaller ( 3 to 4 mm). Oh by the way, the report also recommended the patient follow up with a pulmonologist, which would have been nice to know three months ago. I printed out that report for Mom to take to her pulmonologist on Monday, March 30.

March 30: Mom had an appointment with her pulmonologist, Dr. M. He does need to see the images from December, and he wants her to have another CT scan for comparison so he can see what changes, if any, have occurred in the past three months. He said there are three possibilities:

  • If the spot has gotten smaller since December, that is good and they won't do anything.
  • If the spot has gotten larger since December, they will remove it and do a biopsy. (Removing a spot from the lung is a major surgery.)
  • If the spot is the same size it was in December, one option is to do nothing and just monitor it. But that would keep Mom off the transplant list for two years. The other option is to remove it and do a biopsy.

So that is a lot to think about, but first we need to get the new CT scan.

April 6 (Monday): Mom received a letter from the pre-transplant group stating her status was changed to Hold due to the pulmonary nodules (spots on the lung) and the GI bleed. That was not really a surprise, given everything currently going on.

April 7: Mom had the CT scan today (Tuesday) and she was told the results should be sent to her pulmonologist's office by Friday.

April 14 (Tuesday): Mom has left several messages with the office of her pulmonologist (Dr. M), but has yet to hear anything from them about scheduling another appointment to go over the results of the latest CT scan. She does not even know if they have received those latest CT scan results. She spoke to her new coordinator at the pre-transplant group about it, and she offered to get those results and mail them to Mom, which she did.

April 17 (Friday): Mom still has not heard anything from Dr. M's office, but she did get the latest CT scan results. She could not understand it, but she is going to bring it to me when we meet at a restaurant for a birthday dinner on Sunday.

April 19 (Sunday): I looked at the CT scan results Mom had received in the mail, and something did not seem quite right. It began by stating the indication for the scan was respiratory failure, and it was being compared to yesterday's exam. Well, Mom does not have respiratory failure as far as we know, and there was no "yesterday's exam" because this scan was done more than three months after her previous one. But I kept reading and noticed there was no mention of nodules on the lungs, and then the real surprise was this sentence: "Left chest wall pacing device is seen with leads in the right heart chambers, unchanged." Yes, that is a description of a pacemaker. No, Mom does not have a pacemaker. Although her name and birth date were at the top of this report, and the date of the exam was correct, this was definitely not a report of Mom's CT scan. Oh, good grief . . . <Insert title of this post here.>

April 20 (Monday): Mom called the clinic that did the April 7 CT scan, and she eventually convinced someone that a mistake had been made in the report. The person she spoke to called her back later in the day and said he had the correct report and Mom can pick it up. So Mom planned on doing that the following day (Tuesday), and then going to Dr. M's office in person to try to schedule an appointment since they won't call her back.

April 21: Mom picked up the correct CT scan report and the disc with the images this morning, then went directly to Dr. M's office to schedule an appointment. Surprisingly she was able to see Dr. M while she was there. Mom learned that he had been getting the messages from Mom, but there was some miscommunication in his office about what was supposed to happen next or who was supposed to do what, so nobody ever called Mom back. <Insert title of this post here.> Mom did tell him she was not happy about all that.

Anyway, this appointment was not without its surprises. Dr. M said there was no sign of the 10 mm nodule, but there were a few nodules about 4 mm in diameter. Of greater concern, however, is the pulmonary aorta. He said there are signs of a slightly enlarged heart on the left side, and he recommends that she have a heart catheterization to check that before she has a kidney transplant.

In all of Mom's various heart tests until now, there has never been any mention of an enlarged heart or issues with the pulmonary aorta. Her cardiologist has always said her heart itself is fine. So now all of this information needs to be submitted to the pre-transplant group to see what they recommend, which will impact how soon Mom needs to see her cardiologist. Maybe the pulmonologist is being very conservative, or maybe something has recently changed, or maybe this most recent CT scan captured some images of an area that had not been imaged before. At this point all we can do is speculate.

As if all that was not enough to worry about, Mom started experiencing some back pain on Wednesday, April 22. That seems like a good point to end this post.

=====Monthly Blog Status Update===== 

As of April 30, 2015:

Total posts: 151 (1 in April)

Total pageviews: 25,800 (~1600 in April)

Email subscribers: 12 (unchanged)

Total number of countries that have viewed the blog: 102

1 new country visited the blog in April: