Monday, September 21, 2015

Prayer request!

I received a message last night from a woman looking for some answers and hope for her husband, Teimor, who had a CalMal removed from his brainstem on August 27th. Dr.Spetzler performed the surgery. He is still at St-Joseph and will start Rehab tomorrow. Teimor cannot breathe on his own, eat, or talk. He is completely dependent for his care. Progresses has been slow and it is a very scary time! His wife is with him in Arizona, but they have 2 little girls waiting back home. I have been sharing my journey and the one of others with them to bring them some hope and encouragements, but if you could please keep them in your thoughts and prayers, and also share your own story in the comment section to encourage them, that would be so wonderful!! heart emoticon 

Friday, September 4, 2015

Cardiologist update

I finally saw a Cardiologist yesterday!  My neurologist did tell me a while ago that he wanted me to go see a Cardiologist based on some of the things I experience.

I never really saw the need to follow up with one for different reasons:

1) I kinda got used to doctors come in a room, look down at my chart, look up at me and say:

 "You had brainstem surgery? Wow you look good, that's amazing."
Following with me sharing a few things that bothers me, and be met with "Well, you could of been totally disabled, or a vegetable! "

I know that!!  I am SO grateful that my outcome was no where as bad as I was told it was going to be!  I will never take that for granted.  Therefore, the issues, aches, and struggles I do have, as difficult as they may be, remind me of how much worse it could of been... so I don't feel the need to go see a specialist to access every ones of these problems.

2) I hate complaining about things that do not have solutions!

#2 is what I told him the reason was, when he came in and asked:  "What took you so long? Your heart rate is almost 100 at rest, you must really feel a lot of discomforts!"

I said : "well, I don't like focusing and complaining on things that just are and do not have a solution, so I am trying to move on."   He continued: "What if I tell you that there are solutions, and not only stop putting yourself at risk, but  you can feel better?"

So I told him I would love to hear what is there to do!  I was expecting to hear "Nah, you're good, you are lucky, you are good. Keep doing your best. This is it." So for him to tell me there are things that could help me, i was surprised.  There are lots of people out there dealing with a fast heart beat, no matter what brought it on.  He told me that the number one reason is usually people not taking good care of themselves, but in my case, there was nothing I could do to make it stop without any medical help, because I am not causing it to myself, but acquired out of my control.

He explained to me that I have Vagus nerve damage that were brought on by both the brain hemorrhages and the surgery. The Vagus nerve is actually the longest nerve in the body. It starts at the brainstem, and goes all the way down behind the vocal cords, to the heart, and other organs, and end in the digestive system.

Instead of explaining what the vagus nerve does, and what kind of problems it creates once damaged, here is some information

""The vagus nerve innervates critical organs, such as the heart and lungs, making vagus nerve disorders serious. The symptoms of vagus nerve disorder can include cardiac, gastrointestinal, and sensory problems.  Because this nerve runs from the brain to the abdomen, damage can cause a wide number of symptoms. From difficulty swallowing, some may even experience diminished gag reflex or have a chocking sensation when eating or drinking. Another symptom is a hoarse voice or difficulty controlling the tongue, which can cause slur speech.  It can also cause hearing loss, incontinence, cardiovascular and digestive problems.""

However, I don't think mine are "serious". Yet anyway. haha It sure has not stopped me from living my life!  Again, I am very blessed that my vagus nerve was not damaged to the point of losing my voice, or losing control of my bowels. Ew, that must be awful!   So it may say "making vagus nerve disorders serious", because yes, it can be very serious, but as for me, i guess the most serious, is that my heart was affected more than I even knew.  

The condition of having a fast heart beat is Tachycardia 

""A rapid heartbeat, also called tachycardia, is a condition in which the heart is beating fast, generally more than 100 beats per minute for an adult. A rapid heartbeat can be normal, or it can result from a disease, disorder or other harmful condition.  The number of times the heart beats per minute is called the heart rate. The rate of these contractions is determined by nerve impulses and hormones in the blood. The rate at which your heart beats varies continuously, rising and falling in response to many conditions and situations. For example, your heart rate will rise during strenuous activity in order to ensure that all the cells of the body receive sufficient amounts of oxygen-rich blood. The heartbeat may also become faster in response to stressful situations or when you are in pain. Your heartbeat is normally lower during periods of relaxation or sleep. The average adult resting heart rate falls within the range of 60 to 80 beats per minute.  Treatment of an abnormally rapid heartbeat varies depending on the specific type of underlying heart rhythm, its underlying cause, your age and medical history, and other factors.""

So, the cardiologist put me on some medicine right away that slows down the heart rate. Its a pretty common medicine, but I forget the name.  I so dont like taking medicine.  I also will have a echo and stress test September 18th.   He wants to try the medicine, and depending on how the tests goes, and how well my heart reacts to the medicine, and if it does not cause too many problems, it may be all I need. He said there are surgeries procedures also, but i would think that if I have lived with this "new heart" for 2.5 years and it has not really hurt me other than making me feel like Sh..Poo, I wont need surgery... but I
 really don't know to what extend my heart needs "help" because I simply didn't push it that far.  "That far" is not much at all... I cant do much at all before I start feeling like the world is spinning, feel like I cant breathe and if I don't stop what I am doing right now, I will pass out. SO, I just work slow... I don't do anything strenuous physically. I only have to walk fast for less than 20 seconds to feel my heart racing so hard I can see the beats thru my chest, cant catch my breath, and just feel absolutely awful. So yes, I probably should of seen a doctor before I did, but I dealt with so many other things, and this was just "something else" that I had to deal with that became normal to me. I didn't think it was the sign of some issue that needed medical attention.  

Not much makes me nervous anymore... but the stress test kind of scare me, because I know how little I can do.  I realize now that if I would of pushed myself further, but somehow my guts told me not to, I could of harm myself. A few times, I wanted to finish a house chores and kept going more than I should of. My heart was beating so fast I couldn't breathe. Just going up to stairs will give me a heartbeat at 160 BPM.  I really don't need much physical efforts at all to feel horrible. 

If the medicine is not enough, they are different procedures to help a fast heart beat, like Defibrillators,  Vagus nerve Simulator, or Heart Ablation. 

So, this is my cardiologist update!  :)  I have to be honest and say I am somewhat excited at the prospect of this issue being fixed and get to feel better!   I will never feel the way I did before all of this, but any improvement is a big improvement!

So, Cheer my friends! To your heart's content!