The Importance of Following Up with Doctors

This post contains some images that might make some squeamish. Proceed at your own risk. 

Remember that time I shared that post about Robert passing out and having to go to the ER (The Vagus Nerve Issue). 

Well, it happened again. But this time he must have hit his head on the entertainment center on the way down because he sliced his head open. 

And got three staples. 

This time there was also a microscopic bleed on his brain.

At first, it was no big deal. The doctor sent us home and said to monitor it. If he started having problems, go back to the ER. Follow up with the neurosurgeon in a couple weeks and come back to have the staples removed in about a week. Sounded like a really good plan. 

If only it ended there…

We had been home for about an hour and a half when the hospital called. They got to looking at his labs and realized his platelet count was really low. The brain bleed was now a concern because of his ITP. So, we had to come back to the ER so they could monitor him for a while, do some more CT scans and give him a platelet transfusion. 

So, back to the hospital we went. 

All this to say this whole issue started because of his low heart rate issue. We had seen a cardiologist about it last year and they were to follow up with us when they had test results. We never did hear back and we let life get in the way. That might have been a mistake. I should have pushed more, followed up on those results, and ensured we saw the doctor. It might have prevented this whole episode this time. 

As a caregiver, sometimes we have to advocate for the person we are caring for. We sometimes have to follow up with doctors and make sure appointments are made and results are provided. A caregiver’s life is hard and stressful, but I would rather deal with the stress by being an advocate to help prevent events like the last 24 hours from happening versus the stress we have endured the last 24 hours. 

And, I have already contacted the cardiologist and scheduled an appointment for next month to find out all those results. 

That Method Didn't Work, So What Do We Do Now?

Back in May and June, I shared with everyone the details of Robert's diagnosis of  Idiopathic Thrombocytopenic Purpura. This is an issue where his body is attacking his platelet count and causing it to drop over time. Since your platelets are what help your blood to clot, they are kind of important.

When he was given the diagnosis, the doctor put him on a daily dose of Prednisone. So, for those of you who may have thought it was putting on weight because of his puffy chipmunk like cheeks, it was because of the medication. He had to have blood work done just about every week to see if it was increasing his count. In the beginning, it was. After just a couple of weeks, his count increased greatly. We were ecstatic. The medicine was doing its job. But, then his count started to drop again. The doctor said it is not uncommon for a dip every now and then. It will usually spike back up again. Only his hasn't. While it is not nearly as low as it was when he was first diagnosed, it is still low. 

So, the doctor wants to try a new approach. He wants to do an infusion similar to what they do for many leukemia patients that have low platelet counts. This will mean he has to spend anywhere from 4 - 6 hours a day, once a week in a chair with an iv in his arm to pump the medicine in him. This is a fairly new treatment for ITP and has been shown to have great results. We certainly pray it works on Robert. If not, the next step is to remove the spleen.

The doctor assures me that having his spleen removed is no big deal, but I don't see it that way. Your spleen helps produce your white blood cells. Your white blood cells help fight infections. So, you are at greater risk for developing many infections. Throw in a disease that can cause you to choke, causing fluid to collect in your lungs and put you at a higher risk for pneumonia, it can be an issue. I want to keep my husband around for as long as possible. I don't want to add more complications to the disease that I know will one day take him from me. 

Plus, the recovery time from this surgery can be lengthy and difficult. There is usually a lot of pain and discomfort as well as risks that are associated. For now, all we can do is pray that the infusion treatments do the trick. He will start them in a couple of weeks and I will keep everyone posted on the progress of them.