Sunday, August 31, 2014

Capsule Endoscopy

If you were wondering if the blog changed from weekly to monthly this summer you would be right. I didn't plan things that way, it's just the way things worked out. We had a very busy summer and it seems to have gone by very quickly, so we will see what happens with the blog frequency going forward. It is very unlikely I will go a full calendar month without posting, since the Monthly Blog Status Update really needs to published monthly. (Incidentally, you can see at the bottom of this post that the country count almost reached 100 in July. Did we reach 100 in August? Find out in September . . .)

Today's post will be an update on Mom. In the previous update (May 25) I mentioned she had had some GI issues that were causing some blood loss. She had visited a gastroenterologist and had a colonoscopy. The colonoscopy showed that she has an arteriovenous malformation (AVM), which is when the blood vessels do not form correctly, in this case in the inner wall of the colon. It can be corrected during a colonoscopy if it becomes a problem (I assume by cauterizing), but there is no need to do anything at this point.

As of June the plan was to do a capsule endoscopy, which requires the patient to swallow a pill camera which then transmits pictures to a receiver (worn by the patient) as it travels through the GI tract. I thought that was the coolest thing ever and was hoping Mom would get a disc with those pictures like we did in the past for her CT scan. Before they have patients swallow the pill camera they have them swallow a pill the same size as the pill with the camera to make sure it will pass through the patient's GI tract. If the pill camera gets stuck they usually have to remove it surgically, whereas this test pill will dissolve on its own if it does get stuck. Mom swallowed the test pill at some point in July and it did not get stuck, so at that point it was just a matter of scheduling the appointment to swallow the pill camera.

On Wednesday, July 23 I found out Mom had been having some bleeding issues for three days. She told her nephrologist about it that morning, but her hemoglobin (from Monday's blood draw) was over 11 so he was not overly concerned and did not consider it an emergency situation. Mom called the office of her gastroenterologist and told them what was going on, but the earliest they could see her was August 4 to swallow the pill camera. So given all that, and the fact that Mom did not feel bad and things were improving, we decided there was no need to take her to the emergency room and have a repeat of the visit in May where they basically did nothing.

Oh, what a difference a week makes . . .

The following Wednesday (July 30), Mom arrived for dialysis and was told that instead of having dialysis she needed to go to the hospital as soon as possible because her hemoglobin (from the Monday, July 28 blood draw) was 5.5 and she needed a blood transfusion. So she went to the hospital and they ran whatever series of tests are required before giving someone a blood transfusion. Her hemoglobin measured at the hospital was 4.6, so it had dropped a little since Monday. She was admitted and started getting the transfusions. They also did an abdominal scan of some sort to determine the source of the bleeding.

There was some more bleeding overnight Wednesday night, which Mom was able to show to the nurses. She had dialysis in the hospital Thursday morning and also received some more blood. Her hemoglobin increased to 9 on Thursday, so the doctors were pleased with that and she did not receive any more blood transfusions. We do not know exactly how many units of blood she received, but I think it was 4 to 6 units. (I was out of town during all this excitement, so I was getting all my info second- and third-hand.) The scan that was done on Wednesday did not show any active bleeding, so they started the capsule endoscopy on Thursday and had her swallow the pill camera. One of my nephews told Mom she was taking the ultimate selfie.

On Friday, August 1 they gathered the equipment for the pill camera but said it would take a couple of days to go through the pictures. They told Mom she would still be in the hospital for dialysis on Saturday, and later in the day she was told she would be there all weekend and would not be leaving until they determined the source of the bleeding.

On Sunday my son and I traveled back home from North Carolina, and we were planning on visiting Mom in the hospital after we went home and took care of some things. I contacted Mom after we arrived at the airport, and much to my surprise she was already home. The doctor (not her normal gastroenterologist but another one from the same practice) said there were no obvious sources of bleeding found in the pictures from the pill camera, and since her hemoglobin was up and there was no active bleeding, there was no need to keep her in the hospital. He said they would probably schedule a colonoscopy to see if they could find the source of the bleeding. He also said something about Mom having diverticulitis, which was news to her.

The next week Mom scheduled an appointment with her gastroenterologist (Dr. H) for August 15, and fortunately I was able to go with her due to my work schedule that day. Here is what we learned from Dr. H:

  • He has essentially ruled out cancer or any other life-threatening condition as being the cause of the bleeding.
  • Mom has diverticulosis, not diverticulitis. Diverticulosis is when outpockets form in the wall of the colon, and often they do not cause any problems. But if they get infected and form abscesses, that is called diverticulitis and it can be serious.
  • Mom's AVM (Arteriovenous Malformation) is near the beginning of the large intestine (colon), above the appendix. He did not see any sign of bleeding there in the pictures from the capsule endoscopy.
  • The pictures did show some blood in the colon about 30 minutes after the camera passed the AVM (probably in the transverse colon at that point), but the source of the bleeding could not be determined.
  • There isn't much to do at this point since there is no active bleeding. If another bleeding episode does occur and the source can be pinpointed, it may be possible to remove that section of the colon.

So right now there is not anything to do proactively, other than try to maintain a high fiber diet. Dr. H said some people just have one bleeding episode and then no more, whereas other patients continue to have bleeding episodes until something is done to correct them.

One final note about the blood transfusions. Mom and I both remember when she had some appointments for her initial evaluation for the kidney transplant, someone told us that having a blood transfusion could have some impact on a person's eligibility for kidney transplant. We did not know if it was an automatic exclusion, if it was dependent on some test they do after a blood transfusion, or something else. I spoke to Mom's transplant coordinator this past week and asked her about it. She said blood transfusions cause a patient to develop additional antibodies, and that can have an effect on whether or not a specific kidney is a good match. So it just means they have to be slightly more selective when determining whether or not a potential donor kidney is a good match for her.

Next up I hope to get back in the groove and continue with the article reviews.

=====Monthly Blog Status Update===== 

As of July 31, 2014:

Total posts: 140 (1 in July)

Total pageviews: 18,300 (~1000 in July)

Email subscribers: 10 (no change)

Total number of countries that have viewed the blog: 99

2 new countries viewed the blog in July: