Hyponatremia and Central Pontine Myelinolysis

Discharged:

I think one of the hardest moments I faced after developing CPM/EPM was being discharged from the hospital. I literally had a bit of a break down. I don’t think my reaction was abnormal.

I was already beginning to see some improvements during the week I was hospitalized for CPM/EPM. At the same time, I was still really screwed up. I was NOT anywhere close back to my formal self.

I had only had the injury for about 10 days. I was aware from the very little access to information online that I would not be considered out of danger for at least 3 weeks from the date of injury. Some research suggests that you can be at risk for dying for up to 12 weeks. There’s just not enough research and answers fluctuate.

Everyday I woke up in the hospital I felt a sense of relief, but every time I went to sleep I felt anxiety. Would this be the time that I would not wake up or wake up and not be able to move?

At the same time, the doctors were monitoring my symptoms intently, but they were truly unable to do anything but watch me.

They were afraid to give me things like pain medications or even something as benign as glucose IV fluids because they were concerned with how they would impact my neurological functions.

Despite their not doing much of anything but observing, I felt a comfort in knowing I was there. If something bad happened, I knew that something could be done immediately.

I was also extremely dismayed at leaving because I was NOT normal. At that point in time, my list of neurological issues was extensive. I had problems losing my balance, walking into walls, developing hypotension when I was standing and hypertension when I was sitting. How was I going to get back to a “normal” life if I couldn’t even stand up for long periods of time without getting super sick?

One of my biggest issues at that time was my speech problems. It was extremely obvious, and I have a phone sales position. How could I perform my job if I couldn’t speak properly?

I’m sure if you are reading this, you are experiencing something similar to this or deficits that may be greater. It is terrifying. There aren’t any “real” answers. There is a lot of unknown.

This will probably lead to anxiety and depression when you are released from your hospital or hospice. It’s like losing an anchor in the middle of a hurricane.

What should you expect?

First, make a list of your questions. Is the hospital or rehabilitation center setting up ongoing occupational, speech, and physical therapy at home? Who will be in charge of your ongoing treatment? Will it be your general practitioner? Will it be a neurologist from the hospital who was treating you? Who should you consult regarding your work notes, disability claims, insurance questions? What will your insurance company cover? What will your co-pays be? Will you need 24 hour support, live in aid or daily assisted living? What type of medications will you need and those side effects? Is there any doctor associated with the hospital that has experience with CPM/EPM? Can you drive? Are there any specific physical limitations that should be avoided? Is there a support group they know of (you probably won’t find one for cpm/epm, but you might find one for neurological disorders or brain injuries?

Is there a source for your care givers? For instance, you may experience things like paranoia, dementia, irritability. These are normal psychological effects of it. If you become unstable, who should they call? If your symptoms become worse, what should they do?

If you were employed before your injury, you need to get in touch with your human resources department. If you are a caregiver of someone who has CPM/EPM, you will need to contact their employer to let them know what the situation is and find out about their disability policies. In most cases, you can fill out FMLA forms to help protect their/your job. If you are a caregiver, you will want to find out about becoming power of attorney.

In most cases, you were not anticipating this to occur, and it is a huge surprise. You might have been perfectly healthy previous to this injury, but now you’re facing the chance of having life long injuries. You probably did not have things like your living will, durable power of attorney, health care power of attorney.

IF you are reading this as a precaution, and you’ve never developed hyponatremia or your CPM/EPM, then I recommend taking the initiative and getting these basic legal affairs taken care of. Let’s look at the facts, you may never develop CPM or EPM, but you do have a fair risk of developing hyponatremia.

Further, you are going to die at some point, whether it’s a car accident in 3 weeks or a heart attack tomorrow. It’s inevitable. You need to be certain that you have everything ready for your family and your friends.

At the very least, you need to discuss your plans with your family and friends. It’s never a comfortable subject. No one wants to face the reality of losing someone they love, but it’s worse to leave the heavy burden to your family and friends when they are suffering from the pain of not having you in their life.

If you need help, most lawyers will consult with you free. There are legal forms that are available online. At the very least, you can create a document at home, typed or written that express your wishes.  You simply take that letter to a notary (usually a bank will have a notary) and sign and date it in front of them. It has to be signed and dated in front of the notary to be valid.

This is just a stepping stone on what to do. I hope this helps, and if you think of any additional advice to add, please feel free to do so.

Take care!