2014 Recap

Ok, now that I have finished blogging about 2014 it is time for the 2014 recap, following more or less the same format I used for the 2013 recap.

First, here is what happened in the blog in 2014:

• 27 new blog posts were written, which is an average of one every two weeks.
• 21 articles were reviewed in 19 blog posts.
• 22 additional countries visited the blog, bringing the total to 101.
• The blog received 25 spam comments. Here are my favorite sentences from those:

Cuticles function as barriers to bacteria and fungus, but they can often overgrow.

The Hair Loss and Business Conference is just one of the new hairs against one of your longer hairs.

Reading through this post reminds me of my old roommate! He always kept chatting about this.

In personal news, here is what happened in 2014:

• After being removed from the kidney transplant list in November of 2013, Mom was put back on the list in May of 2014 due to a change in how they categorize transplant candidates. Her wait time continued to accrue while she was off the list, which is good news.

• During 2014 Mom had the following notable medical procedures and events:
• Kidney ultrasound
• Echocardiogram
• At least two EKGs
• At least two colonoscopies
• Capsule endoscopy (swallowing a pill camera) 
• Four emergency room visits for a recurring GI bleed, leading to three hospitalizations with a total of 16 nights in the hospital
• Blood transfusions on three separate occasions
• One overnight hospitalization for increased heart rate
• Diagnosed with diverticulosis (not diverticulitis)

Dialysis was not a major issue this year like it was in previous years. Mom did switch to a new nephrologist at the dialysis clinic and she has changed her dialysis time to the late afternoon/evening slot, and the situation with dialysis is stable.

So what's in store for the blog in 2015? Generally speaking, more of the same. In addition to the updates on Mom as necessary I do want to try to publish at least one article review per month. There are not very many left that provide any significant information on fibrinogen amyloidosis, and I think I have reviewed all of the articles I am aware of that deal exclusively with fibrinogen amyloidosis. So I might finish the reviews of all relevant published articles this year.

In real world happenings, the big event in 2015 will be the familial amyloidosis meeting in Chicago at the end of October. Mom and I already have our rooms reserved, so hopefully we will see you there. It looks like one of the breakout sessions on the agenda is specifically for non-ATTR variants, so that should be informative for us aFibbers.

The next post will be an update on the situation with Mom's elevated heart rate. Stay tuned!

Happy New Year!!!

Welcome to 2015 everyone. Since this is my third Happy New Year post in the history of this blog I put three exclamation points in the title. Hopefully I'll be around long enough such that the number of exclamation points becomes ridiculous.

Instead of being a recap of 2014, this blog post will be another Mom update since there was some additional activity in 2014. At the end of the previous update she had been released from the hospital on November 26 after being admitted on November 22 for yet another GI bleed. I mentioned at the end of that blog post that based on the average number of days between hospital visits for GI bleeds in 2014, the next one would be due around January 29 of this year. It turns out we did not have to wait that long for another hospital visit, unfortunately.

You may remember that shortly after being admitted to the hospital in November, she had an episode where her heart rate jumped up to the 140s while she was resting comfortably in the hospital bed. That did not happen again during that hospital stay, but it did happen again on December 10 and then again on December 16. In both cases she was at home, at rest, and her blood pressure was fine when her pulse went up. There was no major discomfort (unlike the episode in the hospital), so she was able to lie down, take some additional blood pressure medicine, and have the pulse come back down after a couple of hours. And then it was time for Christmas . . .

Mom was having dialysis the afternoon of Wednesday, December 24 (Christmas Eve). After being on dialysis for about an hour she started having chest pains and could feel her increased heart rate, so she called my sister Amy and asked if she could come get her and take her to the hospital. Amy suggested that Mom instead have the dialysis clinic call 911 since she was having chest pains, which does seem like an obvious thing to do with those symptoms. Amy headed to the dialysis clinic, the ambulance came for Mom, and Amy followed the ambulance to the closest hospital which was one none of us were familiar with. The ambulance did not have its siren on, so the paramedics must have determined it was not a life or death situation at this point. I believe they gave Mom a nitroglycerin tablet in the ambulance and her heart rate started to come down.

Mom arrived in the emergency room and was admitted after they did the standard stuff such as drawing blood, taking a chest x-ray, and doing an EKG. Everything looked fine but they admitted her for observation and planned to do a chemical stress test the next day. Mom had the chemical stress test Christmas morning (December 25), no abnormalities were found, and she was released that afternoon. Merry Christmas! (Fortunately we had done most of our family Christmas stuff on Tuesday of that week, so no plans had to be changed as a result of this hospital visit.)

So that is how we finished 2014, with yet another hospitalization. The next post, which will hopefully be this month, will be the 2014 recap/year in review.


=====Monthly Blog Status Update===== 

As of December 31, 2014:

Total posts: 145 (1 in December)

Total pageviews: 22,300 (~800 in December)

Email subscribers: 12 (unchanged)

Total number of countries that have viewed the blog: 101

No new countries viewed the blog in December.

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Rapid Response Team

End-of-year greetings, loyal blog readers. Once again I am publishing the only post for the month with just a few hours to spare. Maybe that will change in 2015. Or maybe not.

Today's post will be another update on Mom, followed by the always exciting monthly blog status update for the end of November. The last update on Mom was in the October 30, 2014 blog post, and there really was not much to update at that time. She had been released from the hospital on September 25 after another GI bleeding episode, and not much had changed since then. She has been feeling very tired after most dialysis sessions, and often would need to take a very long nap in the middle of the day after coming home from dialysis since she goes early in the morning. But she did recently change her dialysis start time from the first time slot in the day to the last, which meant she could get some things done during the day before dialysis and then just come home and go to bed. That seems to be working better.

Since everything was going along smoothly in November it was time for something to happen. Sure enough, Mom had another GI bleeding episode and went to the emergency room the morning of Saturday, November 22. She had been nauseous on Thursday and first noticed some bleeding on Friday before going to dialysis Friday night. Her first hemoglobin measurement at the hospital was 7.8, which was down from 10.2 for the Monday blood draw at dialysis. I got to the hospital shortly after 2 PM to relieve my sister Laura who had taken Mom to the ER that morning, and Mom was admitted and arrived in her room at 2:40 PM. She did not think they were going to give her a blood transfusion based on what she was told in the ER, but one of the first nurses to come into her room mentioned something about a blood transfusion.

Shortly after 3 PM a doctor (Dr. W) from the same office as Mom's general physician came to the room and talked to us. She said it made sense to go ahead and give her a unit of blood because her hemoglobin had dropped so much since Monday which meant she was actively bleeding. Mom and I filled her in on the history of this GI bleeding issue and she asked Mom how she was feeling. Mom said that other than not having any energy she felt fine. No chest pain, no shortness of breath, etc. She asked Mom if she thought she needed oxygen and Mom said she didn't think so. Then they talked about diet and whether or not Mom could eat something. Dr. W looked over the hospital menu and told Mom to wait about 20 minutes to give her time to enter the orders regarding Mom's diet. I checked the time and it was 3:25 PM, so I planned on having Mom order some food around 4:00 PM.

I stayed in the room talking with Mom for awhile, figuring I would leave after Mom ordered her food since everything was stable at that point and there had not been any discussion of doing any tests this evening. At some point Mom mentioned she could tell she was having some heart palpitations, but she was not in any distress and I did not think much of it since I knew one of her medications was for heart palpitations. She was not connected to any monitoring equipment at this point, so I did not have any information about her heart rate. Then my sister Amy called me at 3:54 PM. I talked to her for a few minutes and then handed the phone to Mom so she could talk to Amy. Mom and Amy talked for a few minutes and then Mom handed the phone back to me. I was talking to Amy and telling her I was planning on leaving soon and didn't see any reason for her to come to the hospital tonight when I could see Mom was having trouble getting comfortable in bed. She told me she needed oxygen and to get off the phone.

I got off the phone with Amy and pressed the call button for the nurse. A nurse or technician walked into the room within a few seconds of me pressing the call button (probably just a coincidence) and I told her Mom needed oxygen. She turned right around, I assume to either get someone to do it or to get what she needed to put Mom on oxygen. Mom kept getting worse and said it felt similar to what she experienced on the cruise ship when she couldn't breathe because of the fluid buildup. Ok, we have a bona fide situation now. Then a nurse answered the call button and Mom told her she needed oxygen and she probably said something about heart palpitations or difficulty breathing, I don't remember exactly.

Mom's room was very close to the nurse's station, so a nurse entered the room rather quickly. I immediately told her Mom's symptoms had an acute onset, and with that and whatever she saw going on with Mom she quickly left the room and got some help. I heard someone asking about calling an RRT, which I later learned stands for Rapid Response Team. (It's not as serious as a "Code Blue.") I knew it was about to get crowded in the room, so I got the hospital phone and Mom's cell phone off her bed and stepped into the hallway. As people started filing into the room I heard over the intercom the call for RRT with Mom's room number, and someone entering the room said she was coming in with the crash cart. I also heard a nurse at the nurse's station trying to contact Dr. W.

While I was outside in the hallway I texted and called Amy to keep her informed the best I could, since I had to abruptly end our previous phone call. I could hear Mom talking to the nurses so I knew things weren't too bad. I did hear someone say her heart rate was in the 140s, which is considerably higher than her resting heart rate which I believe is typically in the 60s or 70s.

Sometime after 4:30 PM a nurse told me they were moving Mom from this floor (sixth) to the third floor, which is the telemetry floor. They can monitor her more closely there since those patients are always connected to heart monitors which I assume are monitored centrally, plus they can give more medications on that floor than they can on the sixth floor. So after they wheeled Mom out I gathered up her stuff and went down to that floor. She was settled in her new room just before 5:00 PM.

Mom's pulse rate was 137 bpm when I arrived in that room, and it gradually went down to the 120s as they gave her some medications to lower her blood pressure and pulse. Her blood pressure was fine but her pulse was still above 120 when I left shortly after 7:00 PM. She did order some food and had no difficulty eating it. Her hemoglobin at the 5:00 PM blood draw was 8.0, so it looked like that was stable and she might not need a blood transfusion after all.

Mom sent me a text the next morning (Sunday, November 23) saying her hemoglobin was down to 6.4 and she would be getting a blood transfusion. Her heart rate had finally come down to the 60s after she ate breakfast Sunday morning. She received another unit of blood Sunday night because her hemoglobin was at 6.5. It was up to 8.7 Monday night and still at 8.7 Tuesday morning, so it looked like things were holding. She had dialysis in the hospital Wednesday morning, November 26, and then she was discharged that evening (the day before Thanksgiving.)

Unfortunately we did not learn anything new during this hospital visit, since no imaging tests were done. One of the physician assistants from her gastroenterologist's office did talk to Mom about having another colonoscopy to try to locate the source of bleeding, but Mom questioned whether that was really necessary since the last one didn't show anything and the prep for colonoscopy is so difficult.

If she goes to the hospital again for this GI bleeding issue, our plan is to contact the offices of both her general physician and her gastroenterologist to let them know she is on the way to the emergency room, so hopefully those doctors can get involved as soon as possible and order whatever imaging tests might help locate the source of the bleeding. For the record, here are the dates of her emergency room visits and hospitalizations this year for GI bleeding:

May 2 (ER only, not admitted)
July 30 - August 3
September 18 - September 25
November 22 - November 26

In case you're curious, that was 89, 50 and 65 days between hospital visits, for an average of 68 days. So if nothing changes, the next episode of GI bleeding is due around January 29 of 2015.

Happy New Year!!


=====Monthly Blog Status Update===== 

As of November 30, 2014:

Total posts: 144 (1 in November)

Total pageviews: 21,500 (~800 in November)

Email subscribers: 12 (increased by 2)

Total number of countries that have viewed the blog: 101

No new countries viewed the blog in November.

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