Tuesday, January 14, 2020

Updates on Billy’s health issues



Just wanted to share some updates about Billy for those that are interested. As you know, the last few years have been rough. It seems he’s been dealing with one weird health issue after another. I know that some of you don’t want to read a long explanation with all of the details, and that’s ok. For those that do want to know specifics, it’s easier to put all of the information here instead of repeating it multiple times.

He is having his yearly endoscopy and colonoscopy today. Good times! He has had a hard time with these procedures in the past. From anesthesia not working well enough to finish the procedure, blood pressure and heart rate spikes before they even start, really long recovery times, and ER visits after it’s over from nearly passing out. He needs specific medication and IV fluids immediately after to minimize these complications. We would appreciate prayers for an uneventful day and good results! 

They have to do regular scope procedures for several reasons. The colonoscopy is to monitor the Crohn’s Disease and remove any polyps they find. It will have to be done every 1-2 years or sooner depending on the severity of symptoms. The endoscopy will likely be done yearly, but could be more often depending on the situation. It needs to be done for multiple reasons. First, he has an autoimmune gastritis that causes his body to essentially attack the lining of his stomach. It is considered a precancerous condition. That doesn’t mean it will cause stomach cancer, but it does increase the risk. He also has low stomach acid. Higher acidity is needed for proper digestion. Having an alkaline stomach ph like he does can cause problems. It also makes his body produce high levels of gastrin. The combination of issues is likely what causes his body to produce gastric Neuroendocrine Tumors (NETs). He has already had several NETs removed over the last few years. Thankfully, they have been low grade and not aggressive. They usually don’t even know they have removed a neuroendocrine tumor because they are so small. They do a mapping process where they take biopsy samples from multiple areas in his stomach. The pathologist reviews the specimens and uses a special solution to test for NETs and do staging. So, we usually don’t know if there were any NETs or other precancerous concerns found until we get the report about a week after the procedure. As long as they are only found in his stomach and continue to be the same type of NET, they only have about a 5% chance of metastasizing. However, there’s always a chance that they could become a more aggressive type and if they did grow or spread, they would likely go to his liver. If they ever find any NETs outside of his stomach, that would also be a huge concern. So, careful follow up and frequent screening is necessary. 

He continues to have crazy episodes that cause surges of Adrenalin, elevated blood pressure and heart rate, extreme anxiety, dizziness, stomach issues, and more. He experiences a wide range of symptoms daily. They vary in duration and intensity. They started him on a medication that seems to be helping control the blood pressure spikes. He still has them, but they haven’t been as severe and don’t last as long. Unfortunately, all of the symptoms are still there. He has learned to deal with them better, so that helps. They haven’t found enough evidence to support a diagnosis of a Pheochromocytoma (a type of neuroendocrine tumor on the Adrenal glands), but they haven’t completely ruled out the possibility. Sometimes, it takes many years to find a pheo. We will be talking with a surgeon about the possibility of removing the Adrenal gland that could have a small tumor. Billy is desperate to feel better, so he is open to that idea. I don’t feel comfortable with them removing an Adrenal gland without more evidence.

In addition to those issues, he’s had some abnormal hormone levels over the last several years. His parathyroid level has been elevated consistently. The parathyroid consists of 4 tiny glands behind the thyroid. It controls the calcium levels in your body. When it isn’t working properly, it can cause too much calcium in your blood which creates a host of problems. It can also draw calcium from your bones and lead to osteoporosis. So far, his labs show high normal calcium levels and his bone density scan is normal. For those reasons, they haven’t been that concerned with the parathyroid issues since the other problems have been more severe and they’ve been focused on that. However, his endocrinologist said that it is strange to have such an elevated Parathyroid hormone (PTH) with normal calcium levels. Usually, when the PTH is high, it’s caused from a tiny benign tumor on one of the glands. They can remove it laparoscopically in an outpatient procedure and it’s not a big deal. They finally did a nuclear scan to try to find which gland the tumor was on. However, the scan didn’t show a tumor and it showed the same amount of uptake in all 4 glands. That could mean that the scan just wasn’t able to see the tumor because of its size and location. That would be the best case scenario. The problem is, it could also mean that all 4 glands are malfunctioning. That could be caused from Cancer. It could be related to even bigger endocrine problems.

There are several genetic mutations associated with NETs. One of them is of the MEN genes. If a person has this mutation, they are at a much higher risk of having Multiple Endocrine Neoplasia (MEN). Basically, that means increased potential of multiple neuroendocrine cancers in several places, often at the same time. With his history of gastric NETs, symptoms of pheo, and now the parathyroid issues, this is a legitimate concern. The VA hasn’t wanted to do any genetic testing because it’s expensive and there is no family history that we are aware of. However, with all of the recent developments, they decided to schedule him an appointment with a genetics counselor. That  will be next month. Hopefully, they will agree to some of the genetic testing. If he has any of the mutations, we really need to know that. It would change how often he has testing and follow up, what types of tracers they use in scans, and even what treatments they would use.

He has an ultrasound scheduled this week to try to get a better look of the parathyroid area. We have a surgery consult scheduled for next week to talk about parathyroid surgery. I think they will recommend surgery. They just may not know what’s going on until they get in there. Hopefully, it’s a tumor that can be removed and not a problem with all of the glands. 

He’s also continuing to deal with chronic back/leg/nerve pain. Obviously, those are not problems that carry the potential threats that the other things do, but they still significantly impact his daily life and ability to do the things he wants to do. He’s recently started doing Alpha Stem Therapy with a device he uses at home. It’s supposed to have lots of different health benefits. Hopefully, it will  relieve some of his pain and maybe even help the other issues too.

We are trusting God with all of these things and trying not to worry about things we can’t control. My friend, Wendy, used to say that it already is what it is. The Bible tells us that worrying won’t change a thing. God knows every detail of whatever lies ahead and we know He has a plan to take care of us no matter what the circumstances are. It is what it is... BUT, He IS who He is. 

If you feel led to pray for him, here are some specific requests:

  • That there will be no complications with his procedure today and no Neuroendocrine Tumors or other new areas of concern.
  • That he will be able to have the parathyroid surgery and it will be routine and they will not find any cancer. 
  • That they will agree to do genetic testing for endocrine related disorders, and that he does not have any of the mutations. 
  • That God would give us wisdom on how to proceed with the Adrenal issues given the slight possibility that he may have a pheo that they haven’t yet been able to confirm.

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