Back out of whack

Today's post will be an update on Mom. It is a little long, but it covers three months of drama.

In the previous update (May 26 blog post) Mom was dealing with the spot on her lung that was initially found in December of 2014 (but not reported to her until three months later) when some of that testing indicated there might be issues with her pulmonary aorta and a slightly enlarged heart. Then as I mentioned at the end of that post, she started experiencing some back pain on April 22. We will pick up the story there . . .

April 24, 2015 (Friday): Mom told me today her back is still bothering her. It is in the upper back, between the shoulder blades. She thinks she may have strained it at dialysis on Wednesday when she was trying to get up from the dialysis chair. Right now she is taking Tylenol for it.

Mom also told me that she spoke to her pre-transplant coordinator about the most recent report from her pulmonologist about what he saw regarding her heart, and the coordinator will present that to the transplant committee to see what they recommend. The coordinator also told Mom that her gastroenterologist said she is currently stable with regards to the recurring GI bleed that was an issue in 2014. So there is some good news.

April 28 (Tuesday): Mom's back pain continued through the weekend, and when the Tylenol wore off she could definitely tell. She had a regularly scheduled appointment with her rheumatologist this morning and told him about it. He said it was likely a natural progression of her psoriatic arthritis. He gave her three shots in her upper back and neck area, which gave her some very quick relief. But that relief did not last.

May 2 (Saturday): Since Mom could not find any comfortable position for her back last night, we decided she needed to go to the hospital this morning due to the ongoing pain, especially considering that she and my sister Laura are scheduled to fly to Hawaii the following Saturday. At the emergency room they took x-rays and did not find anything broken. They gave her some morphine for the pain which made her nauseous, but she eventually was able to sleep a little. They discharged her that afternoon with instructions to follow up with her physician. They gave her a prescription for Tramadol for the pain, and another anti-nausea medication.

May 5 (Tuesday): Dr. M, Mom's regular doctor (internist), thinks she has a thoracic muscle strain since she is not having any other symptoms like pain in the extremities or loss of bowel control. So for now, rather than scheduling an MRI, she prescribed Mom a Lidocaine patch to place on her back. It can be used 12 hours on, 12 hours off. We are hoping that will be enough to get her through this upcoming week in Hawaii.

May 9 (Saturday): Although Mom had a lot of back pain Friday night, she did very well on the flight to Hawaii. The one week stay in Hawaii seemed to alternate between good days and bad days. Some days she felt too bad to leave the room, whereas other days a pain pill or Lidocaine patch would alleviate the pain enough for her to get out and enjoy herself.

After returning from Hawaii, Mom finally had an MRI and x-ray done on Tuesday, May 26. She says the pain seems to be concentrated in a very specific spot on her upper back, just under where her bra sits. Then on that Friday her back pain was the worst it has ever been, and she cancelled a planned weekend trip to Austin for a graduation party.

June 4 (Thursday): After the MRI results came in, Mom had an appointment with a neurosurgeon, Dr. S of Texas Back Institute. The MRI shows one disc in Mom's upper back is either very inflamed or has a lot of fluid around it, or both. He thinks it is most likely discitis, which is an infection. The next step is to get some blood work to confirm it is an infection. Dr. S also wants to get a CT scan of that area to get a better view of exactly what it looks like. If the blood work does not indicate an infection then they may need to do a needle biopsy of that area. Mom had the blood work and CT scan on June 9.

June 10 (Wednesday): Dr. S called Mom and said the blood work definitely indicates she has an infection, and it will need to be treated with antibiotics either in a hospital or at dialysis. They need to know what type of infection it is to determine which antibiotics she needs, so now they are waiting on some cultures from the blood work, which will take another two days.

Dr. M then called Mom and said she wants to proceed with the biopsy so they don't lose time if the cultures do not indicate the type of infection. The biopsy is scheduled for Friday, June 12, and in the meantime they decided to start giving Mom antibiotics at dialysis this Saturday.

June 12 (Friday): My wife Cathy took Mom to the hospital for the biopsy today (outpatient procedure). There were no complications and the doctor talked to Cathy after the procedure and said everything went fine. Then it became interesting when Cathy was talking to Mom in the recovery room. Mom said the doctor told her the infection had significantly eaten away at one vertebrae and the cartilage around it, and depending on how much damage has been done it may require surgery to clean it up. Regarding the antibiotics, he said she would probably be on them for months since the infection has reached her bloodstream as indicated by the fever that started the day before. So that is a little more information than we had previously.

June 13: At dialysis today Mom was given the first of the two antibiotics that have been prescribed, and she will be given both of them at dialysis starting Monday, June 15. I suspect they are starting her on antibiotics without knowing exactly what type of infection she has because it has progressed so far.

June 18 (Thursday): Dr. M referred Mom to an infectious disease specialist, and Laura took her to that appointment today. The infectious disease specialist, Dr. L, said it could take up to three weeks of antibiotics before Mom sees some pain relief. Given how far along the infection is, she suspects Mom developed some type of staph infection during one of the times her permacath got infected in 2012 or 2013. Dr. L wants to treat the infection with antibiotics first instead of doing surgery to manually remove the infection, because there may be a future need to have surgery to repair the damage or insert rods for support.

July 1 (Wednesday): Mom's nephrologist told her today that her blood work indicates that the antibiotics are working. She is also doing better now with the pain, taking less pain medication and getting more sleep at night.

July 23 (Thursday): The infection markers have consistently dropped week to week since starting the antibiotics. I do not know what these numbers are measuring or what the units are, other than lower is better, but here are the weekly numbers so far: 25, 16, 10.8, 5.1. That is definitely a good trend.

July 28 (Tuesday): Mom had another appointment today with Dr. L, the infectious disease specialist. The infection is definitely going down, and Dr. L is switching Mom to an oral antibiotic.

July 30 (Today!): Mom had an appointment with the neurosurgeon, Dr. S. He said if the antibiotics work then the bone (vertebrae) may heal and fill in on its own. If it does not, and nothing is done about it, she will start stooping over more and more, which he does not want to happen. He took an x-ray today, and depending on the x-ray he will schedule an MRI or CT scan before he sees her again in 4 weeks.

As of the writing of this blog post, Mom seems to be on the mend although not totally free of back pain. But at least any pain now is much less intense than previously, and it does not last nearly as long.

Throughout all of this episode with the back pain we have not thought much about the possible heart issues the pulmonologist noted in his report in April. But Mom has an appointment with her cardiologist next week to discuss that. So the next update on Mom in a month or two should have plenty of things to report.

The familial meeting in Chicago is only three months away!


=====Monthly Blog Status Update===== 

As of June 30, 2015:

Total posts: 153 (1 in June)

Total pageviews: 27,300 (~500 in June)

Email subscribers: 12 (unchanged)

Total number of countries that have viewed the blog: 104

No new countries visited the blog in June.

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Dallas Support Group Meeting: June 6, 2015 (plus some handy handiwork)

Today's post will cover the most recent meeting of the Dallas Amyloidosis Support Group which occurred on June 6, 2015, followed by the always exciting monthly blog stats. But first I want to mention something totally off-subject that I finally had a chance to document after this particular meeting.

The Dallas support group meetings are held on the lower level of one of the hospital buildings at Baylor University Medical Center. Just one floor up, right there in the lobby, is the Adrian E. Flatt, M. D., Hand Collection. A collection of hands? That sounds gross, doesn't it? Well these are not actual hands, but rather bronze-coated casts of the hands of famous people. Dr. Flatt, who was chief of orthopedic surgery at Baylor from 1982 to 1992, began doing this as a hobby in 1952. His collection now includes more than 100 pairs of hands from people of many different professions such as sports, entertainment, medicine, politics, science, etc. Here is a picture I took of one of several walls of this display, to give you an idea of what it looks like:

Adrian E. Flatt, M. D., Hand Collection

It was difficult to get good pictures in there due to the glare of the overhead lights on the glass, but here is one of my favorites:

Wilt and Willie

Those are the hands of basketball player Wilt Chamberlain (7' 1") next to those of jockey Willie Shoemaker (4'11").

Anyway, here is a link with some more information and better pictures:  http://www.juliatexas.com/historichands.htm. If you are ever in the lobby of Truett Memorial Hospital at Baylor in Dallas, look for the hands. Somehow I was attending support group meetings there for three years before I noticed them.

Back to the main topic of today's post, the June support group meeting. The attendance at this meeting was rather low (19) compared to some previous meetings with over 40 attendees, but I suppose summer vacations can account for a lot of that. The guest speaker was Dr. B from Mayo Clinic in Rochester, who talked initially about AL amyloidosis and then briefly touched on the other types. Then he talked about the various clinical trials that are in process and how they differ in terms of the approach to treating amyloidosis, whether it's stopping the production of the misfolded proteins or helping the body eliminate them.

Of the 19 attendees, ten were patients and nine were friends or family members of patients (including two women whose husbands had lost their battle with amyloidosis). There were 4 AL amyloidosis patients and then one or two each with localized, ATTR, other familial, or wild type TTR. I believe there were only one or two patients who were attending their first support group meeting.

That's it for today's post, which is barely making it out before the end of June. Maybe the July post will be before July 31. Or not.


=====Monthly Blog Status Update===== 

As of May 31, 2015:

Total posts: 152 (1 in May)

Total pageviews: 26,700 (~800 in May)

Email subscribers: 12 (unchanged)

Total number of countries that have viewed the blog: 104

2 new countries visited the blog in May:

Liberia
Palestine

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Edit 7-1-15: Corrected one month in Monthly Blog Status Update

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:

Oman

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