Aggie Doc

It has been over 18 months since our "Magical Medical Tour" began in search of answers to M's deteriorating health. Most of you know my loathing of managed health care (which drains the caring out of patient care), as well as, Insurance Companies (whom now dictate to Doctors and Hospitals the level of care we receive).
Well, finally with a true caring POTS specialist, Dr. S , and a good Aggie Neurologist, Dr. H '83...we are obtaining answers. These true caring professionals have been poking, prodding, monitoring and taking the time to study the mechanisms of this horrible disease. They appear to be totally invested in obtaining medical answers and solutions for our girl.
The glorious news is that after they administered a new medication last night....her heart rate was normal and she slept. Restorative sleep has been hard to come by as she even has the "episodes" in her sleep.
Tomorrow the Endocrinologist should arrive (evidently, they don't work on weekends) to address the Diabetes Insipidus issues. Likewise, our good Ag has ordered a PET Scan, which will give them a more detailed look inside.
All in all , B and I are so impressed with the level of care and concern M has received at Medical City. She is still very weak, but today she actually as a degree of energy, a commodity we have not seen in her since she left her job in September.
Please, please continue your prayers for they are working and prayerfully, we will have treatment and healing soon.
All of our love and appreciation,
M's Mom, B and M

A Room

So, after 28 hours in the ER at Medical City, I understand where the moniker 'Patient" came from. Thankfully, we are finally in a private room and today should bring a bevy of tests and hopefully some answers.
So many of you have stated your desire to visit and love on M and B. While we need all of your hugs, the Doctor suggested that we hold off a day or so as they will be conducting so many tests which require sensitive monitoring. Aside from the heart monitors, they will be monitoring and recording her brain activity in an attempt to get a better handle on the "episodes" she experiences about 25 times per day. The new specialist, Dr. S, has not ruled out some type of seizure.
Likewise, a new Endocrinologist has been called in to explore the Diabetes Insipidus.
The difficulty she is experiencing in breathing, needless to say, affects her ability to speak. However, I am filled with hope that answers are just around the corner.
Should anyone have the desire to learn more about this horrible orphan disease, may I suggest you go to http://www.potsplace.com/ On the left side are numerous topics dealing with the symptoms and mechanisms of this debilitating disease.
Again, M, B and I are so thankful for each of you. Having powerful prayer warriors like you guys is good medicine!!
I will communicate as soon as we know more.
Love and more love,
M's Mom

Still waiting

We are still in the ER as Medical City has no telemetry beds availble. M is being carefully monitored and we are all ready for a room, yet when you realize that someone may have lost their battle with life for a room to be available....we are being as patient as possible. I just noticed that my communication from last night said Thursday night...can you tell we need sleep?? Your outpouring of love and prayers strengthens us and we are so blessed to have such wonderful family and friends As soon as we obtain a room I will let you all know. Thank you, Love, M's Mom

Medical City

M has been rushed into emergency and then admitted to Medical City. She is on oxygen, has a catheter as well as every other monitor in place.
Please be praying for medical solutions, answers, and healing.
We spent Monday at the Cardiologist, then Tuesday at Medical City and then at another specialist at Presby . However, because Insurance Companies rule the world and dictate medical care, she was not admitted until her condition worsened.
She is really freighted and just so weak. I am rushing to her now, so please pray!!
More tomorrow,
All my love,
M's Mom

M update-Easter

First and foremost, I want to wish you all a blessed Easter, hopefully spent with family and friends rejoicing in the meaning of this day.
I know miracles happen because of today...and, I pray for another miracle...I pray for M's healing and ask that you continue to lift M and B up as their challenges are so great.
Instead of their normal Friday night date night, yesterday's was spent in the Emergency Room as M required I.V. fluids for dehydration. Our JOURNEY has definitely been the "2 steps forward, one step back" scenario.
While last week she was diagnosed with Diabetes Insipidus and given medication to assist with that complication....on Tuesday the POTS specialist had her stop the medication in order to perform a battery of complicated tests at Medical City Hospital in 9 days. So, in the interim, without the medication, she is in constant danger of becoming dangerously dehydrated. She lost another six pounds this week and is just so exhausted.
On Wednesday, she was outfitted with a holter monitor, a loop monitor, and a portable EKG. The humorous event of the week was the nurse telling her she "looked like the uni-bomber" with all the wires and electrical packs.
Hopefully, we will obtain answers in a few weeks. So, please continue to encourage her through e-mails, calls, or prayers.
Love,
M's Mom

History & Update from B

This is Ben. I wanted to send an e-mail to say, "Thank you" and update you! Many of you know M was hospitalized this last week. Your prayers have meant so much and many of you have sent numerous emails expressing your thoughts and prayers and I cannot begin to tell you what encouragement your messages have provided to M. This past weekend in the hospital was met with some progress, but yet we are still in the dark on so much of what is going with her. We pray that we will continue to be on a good path that will lead to her healing. Please continue to pray for M as she still has very rough days with her "episodes" and desiring to find answers to all this.

A brief History:
Two years ago, she began having these "episodes" of dizziness, nausea, flushing, numbness in her extremities, etc. We saw many physicians and specialists, but we were not able to get many answers. In Jan 07, she went on short-term Disability through her work. After about two months, her episodes decreased (she went seven days without any). Within two days of being back at work, her episodes came back. She reached a point where she had to go back on disability in September. It was during this time that M's manager found an article on a syndrome called POTS (Postural Orthostatic Tachycardia Syndrome). After researching POTS, it seemed that we might be onto something. It is an orphan syndrome, no known cause or treatment. Please feel free to go to http://www.potsplace.com/ for more information. This has been a great resource for us and many of the doctors treating M.

After finding a leading national specialist on POTS in the area, we met with him and his team and she was officially diagnosed. She entered into a national study on POTS. The purpose of this study is to find a cause and, more importantly, a treatment for this orphan syndrome. While this seemed to be a good road, M has not had great success with the treatment. Once she started the treatment program, her episodes increased to upwards of 25 per day. So here we are now, having seen a myriad of physicians and specialists for answers and treatment, but not a lot of progress. While she was in the hospital, she was diagnosed with Diabetes Insipidus (water diabetes). It means that she is excessively thirsty, but her body doesn't absorb what she consumes and she typically excretes more than she consumes. This can lead to severe dehydration.

So, now we are back at home and M has more doctor appointments this week and one with a new doctor that is also a POTS specialists. We pray that he will have the answers. Again, thank y'all so much for checking in on M and please continue to pray!

Hopefully we are nearing the end of this journey and M can return to a normal life. She desperately misses her job, sleeping a full night, feeling good, and more importantly doing what she loves the most-serving others.

Thank you!

B

Update

Thank you all for your prayers and sweet messages for M. It has been a crazy last few days, yet we have obtained a few answers. Following numerous tests and a careless nurse who entered incorrect data, which almost resulted in life threatening medication being given to M, we have left the hospital and will be seeing another specialist this week.
Thanks to B's endless research and tenacity, M has also been diagnosed with Diabetes Insipidus. They are administering and evaluating a medication which will hopefully lessen a few of her symptoms. The major problem remains POTS and with no known cure, we continue to search for answers. M is participating in a National Research Study sponsored by the National Institutes of Health, yet no positive results have been obtained to date.
Please continue to pray for complete healing as M is both physically and emotionally drained by these episodes which occur up to 26 times per day.
We love you all and are so blessed to have powerful prayer warriors on our team.
Love,
M's Mom

Prayers

Just a quick note to ask for your love and prayers for M. She was hosptalized yesterday following an EKG at her scheduled Drs. Appt. In the tests to diagnosis M with POTS, they uncovered that her heart is a third smaller than it should be and is, of course, not functioning as it should. The sad news is there is no cure for this disease, yet we just know that some relief must exist.
She is in a telemetry room so her heart can be monitored 24/7 and numerous other tests are scheduled in an attempt to obtain some answers
Please pray for healing and for strength. As it is difficult for her to speak for very long due to the extreme shortness of breath, you might want to e-mail her.
Please pray for healing.
Love,
M's Mom