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.