DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 1

I have received a lot of emails from readers asking me a variety of questions about my personal battle with Dysautonomia. I really would like to answer all of you individually but because my 'good days' are few, I often don't get to answer you in detail the way I would like. Therefore, I thought I would take the time to do a Frequently Asked Questions (FAQ) Series. I hope this will be helpful to those seeking answers about this disease and educational for those of you who would just like to know more about my life with this illness. Once this series is over, I will create a separate page just for these questions and will put a link to them at the top of this page.

Here is part one in the series:

1) WHAT KIND OF DYSAUTONOMIA DO YOU HAVE?

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) with Reflex Syncope.

2) WHAT EXACTLY IS POTS AND SYNCOPE?

POTS is a disease of the autonomic nervous system that is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. Syncope is when you lose consciousness/pass out.

When I stand, the vessels in my legs and abdomen do not constrict properly in order to send blood back to my heart. Therefore, the heart does not have enough oxygenated blood to pump to my brain. This causes a rapid rise in my heart rate and a significant drop in my blood pressure. When the brain does not get enough blood (oxygen), it can not function properly and send appropriate signals. It is at that point that I pass out.

3) DO YOU FAINT/HOW OFTEN DO YOU FAINT?

Yes, unfortunately, as I stated before I do faint. I have syncopal episodes (fainting) pretty frequently. However, over time, I have learned how to recognize the symptoms, so I am better able to recognize when they are coming on and I am sometimes able to get down on the floor to prevent completely passing out and falling. Sometimes though, I don't even realize anything is happening until I wake up on the floor.

4) HAVE YOU HAD SIGNIFICANT INJURIES FROM FALLING?

By the Grace of God, I have not yet had any major injuries. I've had many bumps and bruises and a couple of pretty good lacerations but so far nothing serious.

Stay tuned for Part 2!

Oh, and HAPPY BIRTHDAY to my amazing dad today! We love you Daddy!

Blessings~

Teresa

SICK AND TIRED of being SICK AND TIRED

(Warning: Some readers may find the photos in this post to be a bit, um, gross.  Just a heads up!)

As some of you may know, I have been really sick over the last couple of weeks.  Well, sicker than normal for me.  It all started last September when I had surgery to have a PORT-A-CATH placed in my left upper chest so that I could continue to receive IV fluids of Normal Saline on a regular basis.  Normal Saline has lots of salt and is supposed to help keep my vascular space more full. This in turn is supposed to keep my blood pressure a little higher and help keep me from passing out when I stand….at least that’s the theory.  We have been doing this for over a year, but in the beginning we had to use peripheral sites like my hands, wrists, forearms, upper arms, etc.  We even had to resort to using my lower extremities because we ran out of anything to use elsewhere.

 (Here’s an IV in my ankle. Click on picture to enlarge.)

I just didn’t have any useful veins left.  Plus, I wound up with a blood clot in my right leg which was thought to possibly be related to  one of the IV sites in my ankle  and/or a very long car ride to and from VANDERBILT UNIVERSITY MEDICAL CENTER where I receive some of my care.  So, as an absolute last resort,  I had my very first port put in on September 22nd of last year, which was my husband’s and my 18th wedding anniversary.  Wow, what an awesome anniversary present, huh?!?

 (Here’s an example of what my port looks like.   The circular part is called the portal and has a silicone bubble (the septum) for needle insertion.  The long, skinny tube is a catheter that runs from the portal and is inserted into a large vein.  Once inserted, the tip of the catheter sits just inside the superior vena cava, just upstream from the right atrium of the heart.)    

The surgery went fine.  It only took about 15 minutes in the operating room (OR) under CONSCIOUS SEDATION and then it was in.  After that, everything went fine with the port until April 20th when I suddenly became very, very sick.  Every time we would flush my port or begin to run any fluids through it, approximately 20-30 minutes later, I would have extremely violent chills and my temperature would spike very high.  At first, we did not realize the connection with the port so I had several of these horrible episodes and each one was worse than the one before it.  At one point my fever was 105.  After several days, it was determined that my port was infected and that I was SEPTIC.  Each time we used the port, small pieces of bacteria  were breaking off and going out into my system and then I would have that horrible reaction.  I don’t think I’ve ever been that sick in my life! 

I spent 5 days in the hospital on IV antibiotics and fluids.  They had to do their very best to use peripheral sites again because of the port being infected.  My veins are so poor and they just would not tolerate an IV for long, especially with all the strong antibiotics and the Phenergan I needed for nausea and vomiting.  They finally determined that I had E-coli growing in my port.  That was very unusual as ports that are infected usually grow much different bacteria.  The doctors explained that I apparently had  E-coli somewhere else in my body and that the bacteria got into my bloodstream and then started to colonize in my port.  So, on April 28th, they finally took the port out and let me come home that day.

Once I was home, I had a bad reaction to the surgical dressing.   I am allergic to most all tapes.  All the skin around my surgical site had become extremely raw and was really hurting.  We weren’t supposed to remove the dressing but we just had to. 

(Here’s what my surgical site looked like a couple of days after surgery.  YUCK!)

After some much needed recovery time, I went back in on May 22nd to have another port placed, this time on the right side of my chest.  Everything went fairly well until Tuesday, June 30th.   Then, we started all over again with chills and fever.  I will tell you more about that in my next post.

Thanks for stopping by!  I hope to see you again soon.  Please leave a comment if you have a minute, just so I know you’ve been here.  You may do so by clicking below this post where it says ‘HEARTFELT COMMENTS’.  You don’t have to sign up for an account or give any personal information.   Where it says ‘Choose an Identity’, you can choose ‘Anonymous’ and then leave your name at the bottom of your message OR you can choose ‘Name/URL’ and then just put your name and leave URL blank.  It’s REALLY easy!  If I can figure out how to blog, you can leave a comment, I promise!  Regardless, if you don’t leave a comment, I’m still glad you stopped by!

Have a wonderfully blessed day! 

(You may click on any of the photos on my blog to enlarge them.)

DYSAUTONOMIA... STORY OF MY ILLNESS

Image via Wikipedia

(FYI - As you may have noticed, this was written in July 2009. Not all information written here is still the same but it does give a good description of my illness.)

A lot of people either don't know I've been sick or don't know very much about my illness. So I thought I'd take this opportunity to write about it and try to explain it.

I have been diagnosed with a very rare neurovascular disease that has greatly affected my life and the lives of my family. It is so very rare that most physicians in our area have never even heard of it. I was very blessed that the cardiologist I was referred to knew what it was and recognized the symptoms right away.

The disease I have is called Dysautonomia, or sometimes Postural Orthostatic Tachycardia Syndrome (POTS), with Reflex Syncope. It is a disease of the autonomic nervous system. In my case it causes very frequent syncopal episodes (fainting/unconsciousness). I have had over 175 syncopal episodes since August '07! In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously unaware of like blood pressure, pulse, respiration, temperature regulation, perspiration, salivation, urinary and gastrointestinal function, etc.

Since my autonomic nervous system is not working properly, it results in a reduction in the ability of my heart and circulatory system to compensate for changes in posture which causes extreme dizziness and syncope (fainting) when I stand, especially if I stand suddenly or for more than a few minutes, often just seconds. When you stand, your body is supposed to adjust to the affects of gravity on your body and compensate for that. For some reason, mine does not compensate well. When you stand, the vessels in your legs and abdomen should constrict so that blood and oxygen gets to your heart and brain adequately. For me, when I stand, the vessels, particularly veins, become unnaturally dilated, causing blood pooling in my legs and abdomen. Thus my heart beats way too fast to make up for the reduced blood volume transferred by each beat. This usually results in my blood pressure dropping incredibly low and then I pass out due to lack of oxygen to my brain. Once I am laying on the ground, I eventually regain consciousness because the oxygen is then adequate again. A lot of the time while I am unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. I have had several tests and have been told it is not seizures, it is just something my body does due to lack of oxygen to the brain.

There are TONS of other symptoms that go along with this disease but the situation above is the most major one for me. Some others include (this is the short list!) :

* Dehydration (this is significant for me and makes my b/p lower)
* Major fatigue and weakness
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat or cold
* Major gastrointestinal issues
* Sleep disorders
* Small fiber neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever
* Noise/light sensitivity
* Visual disturbance
* Tremors
* Pain

It is thought that I have probably had this since childhood but it became active in 2007 after I had a host of medical issues in late 2006 and early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socked but opened a hole into my sinus cavity. This needed to be repaired surgically but it was during Christmas and everyone was on vacation, plus I was scheduled for abdominal surgery in January. In January, I had surgery for endometriosis, bladder sling placement and hernia repair. After recuperating from that, the surgery to repair the hole in my sinus was scheduled for March. I had that surgery and everything went well until I developed Pericarditis (inflammation in the sac that surrounds the heart caused by an infection) in July. From that point on things began to go downhill quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi.

There is no known cure for my illness, all they can do at this time is treat the symptoms. I am currently going back and forth to Vanderbilt University Medical Center for treatment. They are the leading research facility in the world for this disease. I have been three times so far and I am really pleased with the staff there, especially my doctor. However, even with treatment, I am basically home-bound and bed/recliner-ridden most of the time as I can't walk very far without the fear of passing out.

In September of last year (2008) I had a port placed in my chest in order to receive IV fluids on a regular basis. This helps to keep my blood pressure at a more suitable level. The port was an answer to prayer because I have really poor veins. However, in April, I developed acute sepsis and spent 5 days in the hospital. I eventually had to have it taken out and another one put in at the end of May. You can read more about that in my post, MY MOST RECENT HOSPITAL STAY.

I know this is a lot of information and a lot to digest. I am still learning about it and so are the doctors! I do not mind talking about it, so if you have any questions, please feel free to ask me. I would also appreciate your prayers. Even though there is no known cure, I know our God is a BIG, BIG God and He can do anything!

Thanks for stopping by. I'd love to know you've been here so please leave a comment if you have a minute! See ya soon!