Michelle Sawicki

Hi everyone,

Here is the latest from Maggie:

Dear Forum Members,

Now our quilt is an international quilt! This quilt square was done by Carinara from Germany. The quilt is coming along but there's plenty of time for others to join in. Just pm me and I'll send you a quilt square. Thanks to all who are helping with this project.

Maggie

Hi everyone,

Here is an abstract to new research regarding POTS and pregnancy:

1: Pacing Clin Electrophysiol. 2009 Aug;32(8):1000-3.

Outcomes of pregnancy in patients with preexisting postural tachycardia syndrome.

Kanjwal K, Karabin B, Kanjwal Y, Grubb BP.

Pacing and Electrophysiology section, Division of Cardiology, Department of

Medicine, University of Toledo Medical Center, Toledo, Ohio 43614, USA.

BACKGROUND: Postural orthostatic tachycardia syndrome (POTS) occurs more commonly

in women than in men and often affects women of childbearing age. Many of these

women wish to have children, yet there are little reported data on the outcomes

of pregnancy in patients with POTS. To date there has been one report of two

patients with POTS who successfully completed pregnancy. We report the outcomes

of 22 women with preexisting POTS who became pregnant. OBJECTIVE: To assess the

outcome of pregnancy in patients with preexisting POTS. METHODS AND RESULTS:

Twenty-two patients, age 30 +/- 7 years, with POTS became pregnant. Migraine was

the common comorbidity found in 40% of patients. Medications used were

beta-blockers (18%), midiodrine (31%), selective serotonin reuptake inhibitors

(31%), fludrocortisone (13%), combination (40%), and none (18%). During

pregnancy, symptoms of POTS remained unchanged in three (13%), improved in 12

(55%), and worsened in seven (31%) patients. One patient who had recurrent

episodes of syncope without aura was found to have complete heart block and

received a cardiac pacemaker. All patients completed pregnancy successfully.

There were no stillbirths. One patient developed hyperemesis. Eighteen patients

had vaginal delivery and four patients delivered by cesarian section. No other

complications of pregnancy were encountered. Congenital abnormalities were

encountered in the form of one atrial septal defect, one ventricular septal

defect, and one Down's syndrome. Postpartum symptoms of POTS remained stable in

15 (69%) patients and worsened in seven (31%) patients. CONCLUSION: Based on our

observation, patients with POTS can safely complete pregnancy if they desire to

do so. POTS should not be considered a contraindication to pregnancy per se.

PMID: 19659618 [PubMed - in process]

-Michelle

Hi everyone! I am posting these quilt squares for Maggie. Please PM Maggie if you would like to make squares for the quilt she is putting together. -Michelle

Chat Members,

Here are two more squares finished by our members. I could still use some more volunteers to make squares so if you would like to participate please send me a pm and I'll send you all the information you need.

Maggie

Here are two more quilt squares Maggie has received for the quilt project. The first is from Firewoman and the second is from her neurologist who treats her for POTS.

Michelle

Here is an update from Maggie on the quilt project:

Hey Forum Members,

Here is the first quilt square returned to me. Didn't thankful do a great job? I hope this will inspire more members to join in the fun and ask me for your very own square to be put into our first DINET quilt. Looking forward to seeing all those who requested squares in my mailbox!

Maggie

Hi everyone,

I just wanted to update those of you who remember our volunteer Amy, who ran the t-shirt sales for quite some time. She is now in assisted living and the decision has been made that she will have to remain there indefinitely. Amy is having a hard time with this naturally, as she has a young son and husband at home. Please keep Amy in your thoughts and prayers. Those of you who wish to send her a card or note can do so at:

Amy Van Der Kamp

PO Box 214

Prarie City, Iowa 50228

Thank you,

Michelle Sawicki

Thanks so much! I am sorry for my delay in responding. My niece came and visited for my birthday and gave the gift that keeps on giving....the little bugger got me sick!

Michelle

Hi everyone,

I just want to let all of you know that one of my favorite doctors, Dr. Blitshteyn from NY, has moved to a new location. You can now see her at:

Svetlana Blitshteyn, MD

6507 Transit Road Unit C

East Amherst, NY 14051

716-531-4598

I highly recommend this doctor!

Michelle

We're still working on the documentary, but we are getting close to being finished. We are currently reviewing all of the original footage to make sure we added everything we needed to. It probably won't be available for at least another few months.

Michelle

I spoke to Amy last night. She wanted me to thank all of you who sent cards and well wishes. She said that each card brightened her day and gave her something to smile about.

Amy will most likely be in the hospital for a while longer, and then she will need to go into a rehab unit. Right now she cannot sit up without fainitng.

Michelle

Thank you to everyone who was kind enough to send good thoughts, well wishes and cards Amy's way. I am sad to report that she is currently back in the hospital again with a sepsis infection.

Michelle

Hi everyone,

For those of you who remember Amy and her husband Mark and young son Blake, here is an update on her condition:

Amy has not been able to get online for a while now. She has very bad neuropathy and has lost the ability to use one foot correctly. She is currently in the hospital and having a very rough go of it because she cannot stand up without passing out. Unfortunately the doctors do not think she will ever be able to stand again. Amy not only has POTS, but she also has two tick borne illnesses-Lyme Disease and Babesia. She is trying to adjust to a wheel chair and will be sent to a care facility to learn how to get along in the chair.

Amy has volunteered with DINET for several years. She most recently coordinated our t-shirt fundraiser. This is a very rough time for Amy. She really could use some cheering up right now, and I would greatly appreciate if you guys could show your support and send cards to her at:

Amy Vanderkamp

PO Box 214

Prarie City, IA 50288

Thank you,

Michelle

Here is a follow up article that describes POTS correctly and also when the show will air:

http://www.lsjournal.com/100/story/17688.html

Michelle

http://www.marketwatch.com/news/story/nasc...D&dist=hppr

I really hope they realize POTS is not a form of autism before they broadcast it on television!

Michelle

Hi guys,

I only looked this over really quick, but it looks like there is an upcoming radio talk show about POTS:

Click here for more info.

Michelle

Hi everyone,

Please email me if you are interesting in helping out with the newsletter: staff@dinet.org

I'm going out of town for a while, so you probably won't get a response from me until late next week.

Michelle

Upcoming Chat

Topic: Understanding Autonomic Disorders: Syncope, POTS

Start Time: 12:00pm (Eastern Standard Time)

End Time: 1:00 pm (Eastern Standard Time)

Date: June 17, 2008

Description: The Autonomic Nervous system automatically controls many functions of the body such as breathing, blood pressure, heart rate and body temperature. When it dysfunctions, you can have symptoms such as syncope (a brief loss of consciousness or fainting), weakness, light headedness, fatigue, nausea, and palpitations. Autonomic disorders, such as Postural Orthostatic Tachycardia Syndrome (POTS) and syncope are common condition. They are often the result of an underlying medical condition that could be related to your heart, nervous system or blood flow to the brain. Join us as we chat with Dr. Fredrick Jaeger, cardiologist at Cleveland Clinic as he answers your questions about syncope, POTS and other autonomic disorders that can affect your heart.

Click here for more information.

T-shirts are still available.

My son is the one wearing the t-shirt on the sale page. He usually wears a medium t-shirt. That is a small DINET t-shirt, and it fits him pretty well.

I think (?) shipping is $4.80 if you are just ordering one t-shirt. Amy Van Der Kamp could tell you for sure. You can pm her (ajvdk) through the forum if need be.

Michelle

Hi everyone,

There is a new doctor available in NY that comes highly recommended. Here is her contact information:

Svetlana Blitshteyn, MD

Kinkel Neurologic Center, LLP

5 Limestone Drive, Suite B

Buffalo, NY 14221

716-632-9399

Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.

I hope this helps.

Michelle

Thank you to all who wished me a happy birthday and added kind words regarding DINET. How nice of you.

Corina, surf and turf is a meal of both steak and seafood. My favorites.

Michelle

THANK YOU!!! I had a great birthday. Ken made surf and turf and bought me lots of goodies.

Michelle

Hi everyone!

Our forum guidelines have been updated to include the sentence, "Please do not post information regarding anyone else's health without first obtaining that person's permission." Thanks for your cooperation.

Michelle

Thanks for all the support you guys are sending. I spoke to Amy today on the phone. Her doctors are sending her to Mayo tomorrow. She will be an inpatient until she beats the sepsis. Mayo will keep her for a few days afterward to do testing and try to figure out what is going on with her. She is one of those gray area people with a lot of things going wrong and no clear diagnosis. Let us hope that something is found.

Michelle

I am sorry to report that Amy is back in the hospital with sepsis. Please keep her in your thoughts and prayers.

Michelle

Hi everyone,

Hopefully the upgrade will take care of problems people are having with getting logged out. If the problem continues in the coming weeks, please let me know and I'll ask for help from tech support. When you say you get logged out, can you log right back in? The forum does not log you out while you are typing a post or anything, does it? I just want to make sure I am understanding what is happening. I guess I've been lucky and have not been logged out. The only thing I ever experience is sometimes not being automatically logged back in to my next session after previously checking the "remember me on this computer" box in my last session.

Michelle