jeanne

Dear Jan, I'm from Missouri, which is known as the Show-Me State. So, I never take too much stock in what someone says. Instead, I go with what is being "shown" to me. You said your husband was having good response to the chemo. Also, three more rounds WERE ORDERED. So, while the doctor may have been less than hopeful with his words, his ACTIONS indicated there is hope. Stick with that. Best wishes to you.

You're an inspiration to us all. It gives all of us hope that we can return to full-enough health to one day be doing this. Thank you! Thank you!

I completely agree that the most important aspect of a place is whether the doctor actually knows about POTS and has had experience with it. It is important to do your homework and find out if the doctor you'll be seeing has POTS experience before spending money and effort to travel to a place for help. Even if a place is highly reputable (with lots of doctors and lots of specialties), the key is whether there is a doctor who actually treats POTS patients! Best wishes to you.

The Mayo Clinic has a site in Scottsdale. I don't know if they have any doctors there that specifically deal with it, but it might be worth a call to check.

I am so sorry you're going through this. I know exactly how you feel and I have been going through something similar. I have my dream job and I have been fearful that I was going to lose it. Finally, I faced that fear and went to my superiors and simply laid it on the line about how ill I am. I am now on sick leave, with a guarantee of my job being there, when I return. Don't lose your dream. If you have to step away from it for a little, just tell the right people and ask them to reassure you that the dream will continue when you return. I was diagnosed in 2003, but I have hidden this thing from my colleagues and superiors until this fall when the illness became so florid that it became obvious to everyone. I didn't want the illness to be the thing that defined me in their eyes. However, when I think about the effort I put into hiding it, it took a huge effort. It's amazing how voicing my fears actually freed me from them. Don't give up the dream. You can find options. Ask for what you want and see what happens.

Well, I fly to see Dr. Heffez tomorrow. However, yesterday, I went into my office to try to put some things in order before leaving. That was a mistake because I had trouble breathing while there. My administrative assistant called the company nurse, who then called my doctor. He asked to talk to me. I told him I had my feet up and that I'd be fine in a little bit. I guess he didn't like all the breath he heard in my voice and the fact that the nurse had reported my BP as high. He sent the ambulance. By the time they got there, the BP was 200/108. While lifting me onto the ambulance, the tilt dropped my BP to unreadable low. It remained unreadable for awhile so they started the emergency measures. Eventually, it shot back high again. Bottom line, the day was spent in the ER. The good thing was that I had saline pumped into me by the IV all day long. By evening, I was feeling much better. It did mess with my friends' day yesterday as they all came running to make sure I was ok, and I didn't get the things done in the office that I had hoped, but I am hopeful that my increased blood volume from the IV all day will help me tolerate the flights tomorrow better. (I'm not going to try to go to the office today and finish up those things...learned my lesson there!) We're all so hopeful that I will be a good surgical candidate and the surgery will give me back a good quality of life. Has anyone else had trips to the ER lately? I must say that everyone in the ER was kind and professional. Most of them had not heard of POTS, but they seemed to do appropriate care. It wasn't my favorite way to spend a Friday, but the added blood volume is definitely making me feel better today.

Bless your heart. Interestingly, most people are relieved when they hear from a doctor that what they have is "just a virus," thinking it wil pass quickly. Unfortunately, for us "just a virus" is like saying "just being hit by a two-ton truck." When my children were ill (with normal childhood things), I always "babied" them and gave them special privileges. Today, with the POTS, on really bad days, I just give myself permission to be "babied." Because I live alone, usually I'm the one "babying" myself but it somehow works. I basically give myself permission to simply leave the gatorade bottle on the floor by the easy chair when it's empty, etc. On a better day, I'll go back to taking care of all the details of life. So, baby yourself through this just like a mother would baby her sick child through it.

That was a very nice poem. You are very talented. I've thought about penning a few myself, but somehow always felt the need to include the word Nantucket! (smile) Keep up the inspiration.

Putting a name to the condition was a relief for me. Finally, someone could explain why my heart was going so fast, the sweats, the nausea, etc. I hope you have not had a long time of non-diagnosis before now. I also hope you feel relief that you now know what it is and you can work on it. When I walk a flight or two of stairs (up or down), I become very nauseous. I would say that sounds similar to your nausea after exercise. I do have nausea at other times as well. Don't worry that you forgot the dosage of the salt tablets. Memory can be a problem with this. It *****, but you will probably become very good at coping skills. I have my daughter go with me when I talk with the doctor, take the tests, etc. That way there are two of us to hear and remember the details. (Also, she's young and smart!!) In addition, I use post-its for everything now. Even if I think I'll remember something, I still make a note to myself. Also, if needed, I call my own phone and leave myself a message on my answering machine (i.e. "remember to go have your blood drawn on Tuesday"). I then leave the messages on my machine until I've completed it. Also, if you do forget something, calling and asking the doctor (or his/her nurse) to remind you of a dosage or other directions that were written in the chart will actually be appreciated. Most doctors and nurses appreciate patients who are trying to comply and would rather you ask again than simply make a guess at it. I hate having POTS but I do believe that I have received some gifts from having it. I have gotten a lot of clarity about what really matters in life (right now, breathing is really important to me...little silly things like someone cutting me off in traffic are just that now, little and silly). I have found out that many people at my job love and admire me. I had not heard that from them before I got sick. Everyone treated me well enough but no one had shared with me how valuable I was in their lives. There are numerous other gifts that come with this illness. I hope you will find that as well. I once read a book called THE GIFT OF DYSLEXIA. I saw some real parallels in the book with what I am going through. It made me realize that since POTS is a reality for me (just as dyslexia is a reality for the author), and thus, my life has changed. However, it does not mean that all the changes are bad. Best wishes to you.

Thanks folks for the responses. I don't know what the "bee-sting" test was called but it did determine that the sweat glands on the lower part of my body were non-functioning. Evidently that was a a confirmation of the POTS. The condition is out of control right now and I am in huge pain all the time. Breathing is labored now. I am too weak to unscrew the top of a bottle of water by myself now. I am hopeful for some help from Dr. Heffez. I wouldn't even be considering asking for a surgical eval if it hadn't gotten so bad that I can't function. I want my life back!

Thank you for the posting. I've been through a lot of testing. You're right...some are more "entertaining" than others. When I asked a lab tech, who was hooking me up to a machine with lots of connections, if this was going to hurt, he said, "Not really. Just like a little bee sting." Well, it turned out to be 10 little bee stings that each lasted about 5 minutes...all happening at the same time. Later, my daughter who was in the room with me said that she had thought to herself, "A little bee sting? Is there such a thing?" It was less "entertaining" than some of the others. I have two days of testing planned in Milwaukee at this time. I try to look for the entertainment in them! Thanks for a new choice of words and the good wishes.

Thank you, Corinna, for those words of encouragement.

I'm off to Milwaukee for testing and consult with Dr. Heffez. I'm nervous, but hopeful. Any positive advice? (Please don't scare me!)

Thank you to each of you who responded. Knowing there are others going through this who understand is a comfort. I have read this forum for a few months now, but I have never posted before. I wish all of you the best, and thanks again.

Best wishes to you.