DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 4

Please note: If you have not read PART 1, 2 and 3 in this series, please click on the following links to do so before reading this post.

PART 1 Questions 1-4

PART 2 Questions 5-8

PART 3 Questions 9-12

13) WHO ARE YOUR POTS DOCTORS AND/OR WHAT DOCTORS/SPECIALISTS DO YOU RECOMMEND?

My original cardiologist who suspected that I had POTS was Dr. Olubunkola M. Olubi (Dr. Olubi) at Cardiac Disease Specialists (Newnan, GA Office). Dr. Dan Dan (yes, his name is Dan Dan!) who also works for Cardiac Disease Specialists (Piedmont Hospital - Atlanta Office) is the physician who confirmed my diagnosis with the Tilt Table Test (TTT).

It wasn't long after the TTT that I was referred to the VANDERBILT AUTONOMIC DYSFUCTION CENTER at Vanderbilt University Medical Center in Nashville, Tennessee. There I was evaluated and treated by Dr. Satish Raj. I HIGHLY recommend Dr. Raj and his staff at Vanderbilt. I could not be more pleased with that facility! My husband and I have been treated with the utmost dignity and respect every time we have been there. Everyone we have come into contact with has been very, very kind and compassionate. They have listened to everything we have had to say and they have done their absolute best to answer all of our many, many questions. Since my initial evaluation, I have been back twice and have been in frequent contact with Dr. Raj via email. I was scheduled for another follow-up with Dr. Raj not too long ago, but I have not been well enough to travel. I hope to be able to go again soon.

The doctor who truly keeps everything going for me is my Primary Care Physician (PCP), Dr. Patrick Railey. He is an amazing family practice doc I used to work with, go to church with and do medical missions with before I became so sick. Like most physicians, he was not extremely knowledgeable about Dysautonomia before my diagnosis. However, he has really went out of his way to learn as much as he can about it so that he can help me as much as he can in his capacity as my PCP. He has been a huge advocate for me and a true blessing to my family and me during this crazy time in our life.

I do not have any personal knowledge about any other doctors; however, you will find a great PHYSICIANS' LIST at the Dysautonomia Information Network (DINET) website.

14) DO YOU HAVE ADDITIONAL RESOURCES YOU CAN PROVIDE?

Absolutely!! I have provided a few on the right side-bar of my blog but I have been working on a much more comprehensive list for you!

WEBSITES:

BUT YOU DON'T LOOK SICK
CRANBERRY TEA TIME
DYNA KIDS
DYSAUTONOMIA - Symptoms, Causes and Treatment
DINET - Dysautonomia Information Network
MEDHELP - Autonomic Dysfunction Community
NDRF - National Dysautonomia Research Foundation
PHYSICIAN LIST
SEPSIS INFO
SSDI INFO - BYDLS.COM
SSDI - DISABILITY KEY
STARBRIGHT WORLD - Social Network for Teens
STARS - Syncope Trust And Reflex Anoxic Seizures
12 MORE PAGES
TILT TABLE TEST (TTT)
VANDERBILT - Autonomic Dysfunction Center

BLOGS:

12 MORE PAGES
CHRONIC BABE
DARE: Dysautonomia Awareness Rarely Experienced
DISABILITY KEY - SSDI
Dysautonomia: My Journey, My Battle, My Victory, My Life
INSIDE MY HEAD
JONI AND FRIENDS
LIVING TIRED: My Journey with POTS
LIVING WITH BOB
MELANIE'S JOURNEY
ONE DAY AT A TIME
POTS and DYSAUTONOMIA AWARENESS
SURE HOPE
WHERE DID I GET THIS LEMON?

ARTICLES:

AHA - POTS
POTS

BOOKS:

'God Needs Me: Living with Dysautonomia' by Lynn Fox Adams - May be purchased at Tate Publishing or Amazon.

VIDEOS:

Mystery Diagnosis Episode About POTS (Orthostatic Intolerance) - Part I
Mystery Diagnosis Episode About POTS - Part II
Mystery Diagnosis Episode About POTS - Part III
YouTube - 5 Awesome Potsies!
YouTube - Chronically Kylie's Channel

FACEBOOK SUPPORT GROUPS:

DFO
DYNA Frogs
DYSAUTONOMIA AWARENESS
DYSAUTONOMIA BOOK, 'God Needs Me. Living with Dysautonomia.'
DYSAUTONOMIA FOUNDATION
Fans of BUT YOU DON'T LOOKS SICK
FIGHT AGAINST POTS
Got POTS? We do.
I HAVE DYSAUTONOMIA. IT DOES NOT HAVE ME!
Living with Postural Orthostatic Tachycardia Syndrome Group
POTS
POTS and Dysautonomia Awareness
STARS - Syncope Trust And Reflex anoxic Seizures
The Dysautonomia Connection
12 MORE PAGES
UII - Understanding Invisible Illness

This completes my FAQ series. I know for some it has probably been a bit boring. However, I can only hope and pray that there have been at least a few who have found it beneficial because they have been searching for answers related to their own battle with this illness or for those not yet diagnosed. I also hope it has helped answer some questions for some of those who know me but haven't quite understood what has been going on in my life.

Either way, thanks for taking the time to read these posts. As I said at the beginning of the series, in the next few days, I will create a separate page just for these questions. Then I will put a link to it at the top of this page for quick reference.

Thanks again for all the love and support you all continue to show to my family and me. It means more to us than you'll ever know!!

{{HUGS}}

Teresa

P.S. If anyone would like their name, blog or website added (or removed) to my resource list, please let me know.

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.)