Sunday, June 30, 2013

It's always something . . .

Mom seemed to be doing fine after her surgery on Tuesday, June 11. At dialysis on Friday she saw the nephrologist, Dr. N, and informed him about the Saturday emergency room visit and the surgery on Tuesday. She said her blood pressure was still reading high, so he prescribed her a blood pressure medication (hydralazine) to take only when it got above 180.

This situation with the elevated blood pressure since June 3 has been confusing, partly because they never seem to be too concerned about it at dialysis. It also seemed to always be lower at the doctor's office, which makes you wonder how accurate your home machine is. Mom has two machines and their readings were within a few points of each other, so we weren't too worried about their accuracy. But Mom wanted to get a blood pressure monitor that you wear on your wrist so she could take it on an upcoming trip, so she purchased one locally. It turns out that it was reading about 20 points lower than her other two machines. So maybe things were not quite as bad last week as her blood pressure readings at home indicated. But her blood pressure was definitely higher than normal, which I assume was at least partly due to the infection in her abdominal wall muscle.

On Wednesday, June 19, Mom had a follow-up appointment with Dr. K regarding the surgery he had done on June 11. He said everything looks fine. She still does not have full use of her abdominal wall muscles, so she has to use her leg muscles more to get up and down, which makes her legs very tired.

What else can go wrong?

Mom noticed a little bump that appeared on her right leg in May, and she showed it to her internist at an appointment a few weeks ago. Mom thought it was just a wart, but her internist suggested she see a dermatologist about it. So Mom had a dermatologist appointment on June 20. The dermatologist looked at it and said it might be one of two types of skin cancer, so he took a biopsy. Mom won't get the biopsy results for a week or two, but at least it is easily treatable if it is cancerous. The dermatologist described the technique known as mohs surgery, where they remove some tissue, examine it, then remove some more based on what the examination showed in terms of the location of cancerous cells. So in addition to being on dialysis and recently having surgery for an abdominal wall infection, now she gets to worry about possibly having skin cancer.

Mystery Solved

If you are somewhat familiar with Mom's history, you may recall that after her diagnosis of fibrinogen amyloidosis we wondered whether she inherited it from her mother or from her father. There were no clear indications of kidney issues on either side, so we were left to wonder which side it came from until someone tested positive for the mutation on one side or the other. Well, it happened. Now we know. I am still gathering details, so the rest of this story will have to wait for the next post.

Monday, June 24, 2013

Removing The Remnant

The last post ended with me dropping off some pain and anti-nausea medicines at Mom's house after her visit to the emergency room the afternoon of Saturday, June 8. It's a good thing I did not give up on finding a late night pharmacy on Saturday, because my sister Laura stayed with Mom that night and said Mom woke up in pain around 2:00 AM and Laura had to give her a pain pill (hydrocodone). She only took one more hydrocodone Sunday morning when she got up. I spoke to her before noon and she sounded pretty good. She was not 100%, but she was definitely better than she was Saturday afternoon and evening.

June 10, 2013: So Monday morning comes and Laura takes Mom to dialysis for her 6:00 AM appointment. In case you don't remember from the previous post, the dialysis clinic was supposed to have been notified on Saturday about Mom needing some additional antibiotics at dialysis Monday morning. Well guess what. That did not happen. (I suspect the dialysis clinic was already closed on Saturday when all that was decided.) Fortunately, as a backup plan Mom was also given a piece of paper when she was discharged from the emergency room that said she needed a certain antibiotic at dialysis on Monday. Unfortunately, the dialysis clinic does not keep that antibiotic on hand. Also unfortunately, they left it up to Mom to call around and get all this straightened out. Wonderful.

So Mom starts trying to contact someone in Dr. K's office, since we know the emergency room doctor spoke to someone there about the procedure Mom would need on Tuesday to take care of the infection. Eventually she spoke to Dr. K and filled him in on what was going on. It was his first day back at work after having surgery himself, so he understandably did not know anything about the emergency room visit or the procedure that Mom was scheduled for on Tuesday. He said he would find out about this antibiotic situation and also contact their scheduler when that person came in later that morning. He called Mom back and told her when the procedure would be Tuesday morning, and he also called in a prescription for some antibiotic pills she could take in lieu of getting some antibiotics at dialysis. Ok, we can breathe a little easier now.

June 11: Laura took Mom to the hospital early this morning for her 9:30 AM surgery. The emergency room doctor had described the procedure as guiding a needle down to the infection site and draining it, but I guess Dr. K decided to just do surgery instead. It still would not be an overnight stay in the hospital. Once they were at the hospital Laura told me Mom didn't seem to be doing well (very tired, slurring her words) and she did not want to leave Mom alone before surgery. Laura had to leave for work, so I went over to the hospital and caught up with them when they were doing the final prep for the operating room.

The anesthesiologist was asking Mom the usual routine questions, and she was doing ok answering them but I helped answer a few. After the anesthesiologist left Dr. K arrived and spoke to Mom briefly. He explained where he would be making the incision, and that he might need to make two incisions depending on what he found once he went in. I did not ask any questions at that point because it seemed like they were in a hurry to get started. I found out later that there had been a cancellation, which is why they were trying to move Mom's surgery earlier.

They rolled her away to the operating room about 9:00 AM, and I went back home. Cathy had a prior appointment and would not be able to get to the hospital until later, so we did not have anybody in the waiting room during surgery. I spoke to Dr. K on the phone when the surgery was done around 10:00 AM . He said it went well, with no complications. I asked him if the surgical felt was removed now, and he said it was. Hooray, the remnant is gone!

Cathy arrived later that morning and stayed through lunch. Mom was discharged a little after 1:00 PM and my sister Amy took her home. When Mom checked her mail later that evening she found a letter from the pre-transplant group informing her if she did not find a living kidney donor within 90 days she would be removed from the transplant list. Although that news was not totally unexpected, it is a bit depressing and does make us face the reality that Mom will likely be on dialysis the rest of her life.

Next up: Some miscellaneous happenings, and some interesting extended family news.

Tuesday, June 18, 2013

Google my symptoms, please

In the previous episode of "As the Amyloid Turns" we discussed Mom's elevated blood pressure during the week of June 3, and we ended with a bit of a cliffhanger:

June 8 (Saturday): Mom called me at 9:40 this morning and . . . I should probably end this blog post here. It seems long enough.

Let's see if I can cover the next 12 hours in a single blog post. Here we go . . .

June 8 (Saturday): Mom called me at 9:40 this morning and asked me to Google some symptoms she has. She said she has significant pain just below her ribs, on both sides. She said it’s around the diaphragm level. The discomfort started last night and she had a hard time sleeping, and this morning it’s worse. She also said her blood pressure was still high this morning, something like 195/99. Another interesting thing is that she has gained nine pounds in the last week.

I was wondering if it was peritonitis or maybe a ruptured spleen, so I looked up symptoms for both of those. I knew that a ruptured spleen would cause pain primarily on the left side, so I didn’t really think it was that, especially since her internist had checked for an enlarged spleen at her most recent appointment just over a week ago. The only peritonitis symptom she definitely had was the abdominal pain, but I figured since her blood pressure has been high since Monday afternoon, and it isn’t responding to the increased dosage of clonidine that she started taking Thursday evening, we need to get her to the emergency room. I also knew about the spot on her abdomen that flared up, ruptured and started oozing pus while she was in Hawaii last month, so the possibility of that leading to peritonitis was on my mind as well.

So I called Mom and told her we need to get her to an emergency room. My sister Amy took her to Presbyterian Hospital in Plano and I met them in the waiting room. Just before noon she saw a triage nurse who took some basic information and her vital signs. When asked how she would rate her pain on a scale of 1 to 10 (with 1 being no pain and 10 being the highest), Mom said 8. Given her high tolerance for pain, we knew that meant she was really in some pain. But oddly enough, her blood pressure was down a little to 168/94. I explained to Amy that Mom has the opposite of white coat syndrome, since her blood pressure is often better in the doctor’s office. We then went back to the waiting room and Mom was called back at 12:30 PM to an exam room.

The emergency room doctor (Dr. W) came in not long after that and started asking questions, focusing on where the pain was. Mom also showed her that the spot on her abdomen would still ooze a little if she squeezed it. That got the doctor’s attention and she put on some gloves so she could squeeze some pus out herself and get some on a cotton swab so they could analyze it in the lab. We told the doctor the history of the bump, with the peritoneal dialysis catheter insertion and removal, then noticing the bump, getting a CAT scan, finding out about the surgical felt, and the bump recently flaring up like a pimple and rupturing in Hawaii. The doctor said they needed to do a CAT scan and she left the room at 12:50 PM to write up the orders.

Then a nurse came in to insert an IV line and draw blood. He was trying to get the needle in Mom’s left arm when she let out a little yelp of pain. He tried a few more times without any luck, and then he moved to her left hand. He said the veins were blown, which I guess means when a needle is inserted they start bleeding a lot under the skin, making them useless for an IV line. He moved to her left hand and eventually got a needle inserted the way he liked it, but not before hurting her a few more times. He then had to draw some blood from another location and I suggested he try her right hand. So he moved over there but still had some difficulty drawing blood, and he left a nice size blood stain on the bed.

Around 1:15 PM a nurse came in and said something about drinking a liquid to provide contrast for her CAT scan. In the past they have not given Mom any contrast for imaging procedures like CAT scans because of her kidney problems. I wanted to make sure the doctor was aware of that in case the contrast was optional. Since she’s on dialysis now it might not be such a problem since the dialysis would eventually filter out the contrast. The nurse said she would talk to the doctor about it. The doctor came in a little while later and said she had talked to one or more of Mom’s other doctors about the contrast, and they agreed they needed to do the CAT scan with contrast in order to get a good look at her abdomen, and it will be cleared out at dialysis on Monday. I think it was at this point when the doctor said Mom would likely be admitted. I asked her if peritonitis was a possibility and she said it was.

Mom started getting sleepy while waiting on the nurse to bring the contrast liquid. She probably would have slept better but her pain level was still an 8. The nurse brought in the contrast mixture and Mom finished it at 2:45 PM. Another nurse took her for a CAT scan around 3:15 PM. She was gone for about 30 minutes. While she was gone I had the room to myself and found the movie “The Muppets” from 2011. Unfortunately there are just too many interruptions in the emergency room to be able to enjoy a movie.

Her blood pressure reading at 4:22 PM was 149/65, but the pain was getting worse, probably a 9 or 10. She said it was hurting to breathe. I don't think she had been given any pain medication at this point.

Around 4:45 PM Dr. W came in and said she had good news. It isn't peritonitis. Mom has a small pocket of infection in the abdominal wall muscle (about 11 mm), so it’s not an infection within the abdominal cavity. She may not need surgery but she will likely be admitted. Dr. W said they would get her started on an antibiotic and she mentioned vancomycin. Mom and I both spoke up and said she’s allergic to vancomycin. (It gave her that horrible rash when she was given it last year at dialysis.) Dr. W said that was good to know and she would add that to Mom’s allergy list.

I asked Dr. W if Mom had been given any pain medication because her pain seemed to be getting worse and was now getting higher up in her back. She said she would write up an order for some more pain medication.

Dr. W came in later to present a plan that would not have Mom admitted to the hospital. She had been speaking with the doctor on call at Dr. K’s office, and if Mom goes home with plenty of pain meds and antibiotics they can do the procedure to drain the infection Tuesday morning. If Mom were admitted to the hospital today, she would have the procedure Monday in the hospital. Mom was really hoping to get to MD Anderson in Houston for Ed’s surgery on Tuesday, but it was looking like that was not going to happen. So the options were essentially to stay in the hospital on pain meds until they can do the procedure on Monday, or go home on pain meds until they can do the procedure on Tuesday. We said we were ok with going home. Dr. W said not to hesitate coming back to the ER if this plan was not working for any reason over the weekend.

Another part of this plan was that Mom would need to be given some more antibiotics at dialysis on Monday. Dr. W said she had been talking to a doctor (presumably the doctor on call from Dr. K’s office) who was going to call the dialysis clinic and explain the situation and tell them about the antibiotic she would need at dialysis on Monday. Dr. W said they would also give her a sheet of paper at discharge explaining the situation, and she needed to take that sheet of paper to dialysis on Monday.

Not long after that two nurses came in, presumably to begin the discharge process and remove the IV line. Mom told them they could not stay unless they had some pain medication. One nurse looked on the computer and saw that pain meds had been ordered, so she told the other nurse not to remove the IV line just yet. She came back a little later and gave Mom a dose of morphine in the line attached to her left hand. Within a minute Mom said her arm was really itching and burning. The nurse said that was a normal reaction some people have to morphine, and it should go away in a few minutes. Eventually the itching, burning sensation went away and Mom dozed off and got some good sleep. 

Mom's blood pressure reading at 6:22 PM was 136/61, so that was really good compared to what it had been earlier in the day. However, the discharge nurse came in about 30 minutes after Mom had been given the morphine, looked at the monitor and saw that Mom’s oxygen level was only at 80%. I told her Mom had been sleeping and I could see that she wasn’t breathing well. Mom said something about the morphine doing that and I said it’s more likely the sleep apnea. The nurse asked if Mom was on CPAP. Mom said she was and I said something like, “Well, she has a CPAP machine. Whether or not she uses it consistently is a different question.” The nurse told Mom to be sure and use it tonight. Her oxygen came up after she woke up, and it was above 90% in just a few minutes.

Mom and I left the hospital at 6:50 PM and headed to her pharmacy to drop off her prescription. Unfortunately that pharmacy was closed. We went to a CVS nearby, but that pharmacy was also closed. My wife Cathy went online and found a Walgreens pharmacy in Carrollton that was open until 10 PM. Mom was exhausted and needed to get in bed so I took her home so Laura and I could get her to bed and make sure she used her CPAP machine. We got the CPAP machine hooked up per Mom’s instructions, then Mom went to bed and I went to Walgreens with Mom’s insurance cards and the prescriptions for hydrocodone and an anti-nausea medicine. I dropped off the prescriptions some time after 8 PM, then I ate dinner out in my car until they were ready. I took the prescriptions to Mom’s house, gave them to Laura, and headed home around 9:40 PM, which was 12 hours after Mom had called me to Google her symptoms.

So that was a long day, to be sure. I felt like she was in good hands in the emergency room, and as long as Dr. W's plan regarding the antibiotics and pain medications works, she should be fine until the procedure on Tuesday. In the next post we will find out that plans do not always match reality.

Wednesday, June 12, 2013

Under Pressure

My last update on Mom was a short note at the top of the June 6 post where I said she had seen a doctor about the bump on her abdomen that flared up, ruptured, oozed, and then seemed to calm down. At that time the plan was to leave it alone for now unless something happened. So let's see if anything happened . . .

June 3, 2013 (Monday): During dialysis today, about two hours after they got Mom started, a nurse came over to make some adjustments with the needles in Mom's arm for some reason and she did something that caused Mom to scream out in pain. That nurse called Rick, who is sort of a lead tech and Mom's favorite tech, to come over. He tried for awhile without success, also causing Mom some pain once or twice. Rick eventually gave up and announced that the access they were using that day was done. So she only had two hours of dialysis for that session.

When I spoke to Mom at 2:25 PM she did not sound too good. She said she had a headache that would no go away, and she was feeling a little nauseous. She said her arm was not bruised too badly from the dialysis incident, which surprised me given her description of the pain and how long they tried adjusting the needles. I suggested she check her blood pressure with her home machine. My sister Laura called me a little later and said Mom's blood pressure was 194/99, pulse 97. She is on a daily blood pressure medication (valsartan) but she is also supposed to take a clonidine tablet when the top number (systolic) is over 160. She can take one of those every six hours. So she took a clonidine tablet and planned to rest and check her blood pressure again in about an hour. At 4:15 PM her blood pressure was 186/96, pulse 90. At 5:45 PM it was 180/89, pulse 92. At 8:00 PM it was 177/88, pulse 91. So the blood pressure was heading in the right direction and she was due to take another clonidine tablet, which should help it go down some more. I talked to her shortly after 8:30 PM and she sounded much better than she did earlier in the day, with no headache and no nausea.

(Note: While writing this blog post I did a little research on blood pressure and found a site that recommended emergency care if the top number (systolic) is over 180, or if the bottom number (diastolic) is over 110.)

June 4: Mom's blood pressure this morning was 184/94, so she put a call in for her nephrologist at the dialysis clinic, Dr. N. Her blood pressure was 184/84, pulse 85 just before noon. I talked to Mom right after noon and she sounded tired. She still had not heard from Dr. N so I suggested she call his office again and give them some exact numbers on what her most recent blood pressure readings have been.

We all had a 2:00 PM funeral to attend, and Mom had a hard time staying awake during the service. After the funeral we all went to a gathering at the house of my great aunt who had passed away, and Mom seemed more or less ok there. My sisters took Mom home and I stayed behind and got a ride home with my uncle. On my way home my sisters said Mom was not doing well and was slurring her words. My sister Amy said it reminded her of the day last October when she took Mom for her last attempt at peritoneal dialysis training, right before she was hospitalized to start hemodialysis. Mom took her blood pressure when they got to her house and it was 172/77, pulse 81, which I think was the best reading since Monday afternoon. My sister Laura then called me and said she read about the side effects of clonidine, one of which is drowsiness. Mom had taken one clonidine in the morning and then another one around noon, so at that point we were comfortable that Mom's drowsiness could be attributed to the clonidine. She has dialysis tomorrow, and Dr. N should be there so if her blood pressure is still too high he can decide what needs to be done.

June 5 (Wednesday): Well, Dr. N is on vacation starting today. He was at the dialysis clinic on Monday and Tuesday, but he missed seeing Mom on Monday because her session was cut short due to the issue with the needles. I guess he was too busy getting ready for vacation to call Mom back yesterday. Anyway, they routinely check the patient's blood pressure before and after dialysis, and they were not overly alarmed about it. I do not know what the numbers were.

June 6: Mom's blood pressure was still high today. (Incidentally, she has two blood pressure machines at home and they were both giving essentially the same readings.) She called her internist, Dr. M, who wrote her a prescription for six clonidine per day (3 AM and 3 PM). So her first dose of three clonidine tablets was Thursday evening.

June 7: Dialysis went fine today. Mom told them about her blood pressure issues and her increased dosage of clonidine.

June 8 (Saturday): Mom called me at 9:40 this morning and . . . I should probably end this blog post here. It seems long enough.

Thursday, June 6, 2013

Dallas Support Group Meeting: June 1, 2013

This post will have a quick update on Mom, a report on the most recent amyloidosis support group meeting in Dallas, and the monthly blog stats.

In the last update on Mom we were waiting for her doctor appointment regarding the bump on her abdomen that ruptured and started oozing while she was in Hawaii. On Tuesday, May 28, she saw Dr. D, who is in the same office as Dr. K. (Dr. K did the surgery for her peritoneal dialysis catheter, but he was on vacation that week.) Dr. D was amazed that the bump was gone because he said it was about the size of a golf ball at the time the CAT scan was done. He said the options at this stage are:

  1. Do nothing and hope it does not flare up again.
  2. Schedule surgery to remove the piece of surgical felt so it will not cause any more issues.
  3. Wait for it to flare up again, and have surgery if and when it does. That might actually help the surgeon locate it since he can just follow the bump.
Dr. D said he would talk to Dr. K about it and get back to Mom. She talked to Dr. D on June 5 and he said it was up to her if and when she wanted to have surgery, since there is no urgency to remove the surgical felt now. Given all the other stuff going on right now, Mom is just going to wait and see if it flares up again, then schedule surgery when that happens. Right now the oozing has stopped and the hole has more or less healed over.

Dallas Support Group Meeting

On Saturday, June 1, I attended the Amyloidosis Support Group Meeting in Dallas. Mom did not attend because she was in Austin. The medical guest was Dr. Reeder from Mayo Clinic in Arizona. (He explained that they no longer refer to it as Mayo Scottsdale since there is also a location in Phoenix. So it's Mayo Arizona now.)

I counted 32 attendees at this meeting, including Dr. Reeder. Half of the people were friends or family of someone with amyloidosis. The patients included eight with AL amyloidosis, three with localized, and four with familial (including me.) There were three or four patients I had not seen before. The woman whose husband died on February 11 was there. This was her first support group meeting since then, and although it was difficult for her to tell their story she did manage to get through it. She is still in a bit of shock, understandably so, and is in the process of sorting things out.

Two items from Dr. Reeder's presentation stood out for me. The first one was his discussion about the various methods of analyzing tissue to determine the type of amyloid deposits. I have seen various methods mentioned in the journal articles, but Dr. Reeder's presentation briefly went over each method and strongly implied that laser microdissection is the preferred method today. I won't go into laser microdissection now since I know it will be discussed in at least one article I will be reviewing later on.

The other noteworthy item from Dr. Reeder's presentation was his discussion of the effects of doxycycline on amyloid deposits. I discussed doxycycline in a blog post back in January. The short version of the story is that doxycycline is an antibiotic developed in the 1960s that researchers recently discovered may have some benefit in treating amyloidosis. Dr. Reeder talked about how researchers have given amyloidosis to mice and then given them doxycycline so they could analyze the amyloid tissue. He showed a couple of slides of amyloid fibrils as they gradually broke up after being exposed to doxycycline. Boston University is currently recruiting patients with all types of amyloidosis for a clinical trial, so hopefully the results in humans will mimic those in mice. Will doxycycline turn out to be a miracle drug that dissolves amyloid deposits so the body can get rid of them? Time will tell . . .

=====Monthly Blog Status Update=====

Total posts: 80 (5 in May)

Total pageviews: 3191 (1220 in April)

Email subscribers: 4

RSS subscribers: 2

Total number of countries that have viewed the blog: 57

13 new countries viewed the blog in May. That is a record number of new countries in one month.

Dominican Republic
South Africa
Viet Nam