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D-Day Happy 1st Birthday to ME


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Happy Birthday to me!!!!!!!!!!!!!!!!!!!!!!!!!

Last year in March I was diagnosed with pots. Mostly march and April. I was adjusting to this new challenge. Memorial Day 2004 my husband went to 2 parades to play bagpipes in his band, then was to go right to the airport. He was to help our son and his family move into their apt. Then go to KC for a confetence being gone about 2 weeks. I was pushing salt, fluids etc.

My husband decided that he didn't want to leave his bagpipes (mistress) in his car all that time, so he hurried home to drop off his pipes. He heard music and thought run upstairs for a quick hi and bye. When he got upstairs he found me unconsious on the toilet "the thinker"!!! He thought it was pots related. He was able to roust me and get me to take salt, water and some soft foods, but still didn't think it was right. He went downstairs to cancel his flight and when he returned I was no longer roustable. He dialed 911. The police officer was here in 30 sec. and paramedics in 1:30secs later. They wer not able to do anything and scooped me and got me downstairs and to the ambulance, they sent my husband ahead, as they were working on me in the ambulance. They bagged me and tried to intubate me, no luck. I was withour oxygen at least 2 minutes. At the ER they called a code. They ended up paralyzing me to intubate me and put me on life support. My body was so oxygen deprived that my muscles were breaking down.

The doctors didn't have a clue as to what was wrong with me. They put me in ICU where I was unconsious for 4 days...... I won't go into all the gorey details but they extubated me 3x and I crashed everytime :( I was aware of some things. Hallucinated a lot more. I do remember hearing the doctors saying Mark if this doesn't work this time we'll have to trach her. I was very sick and the nurses told when I was conscious. I truly was convinced that I would die. I was sad not to have met my new grandson, but I was OK. Bizzare as it seems. After about 3 weeks they decided to try again. A couple days before one of the hospitalists said that I had ARDS. Pneumonia that was bad and most didn't make it. At that time I was doing better. There were 2 of us in ICU with ARDS on the wed night before I was extubated. Both had orders for cat scan at 8 am and at 9 pm she was going for hers. When she came back they took me. Taking life suport somewhere requires lots of strength the machines are heavy and bulky. I got my cat scan. When we left radiology there were no transporters left so it was my nurse and respiratory therapist. So I grabbed and pulled mu IV pole. When we returned to the ICU there was a nurse the one with the other patient, she said whats the deal they both have the same sats and she is pulling a pole!!!!!They put me in my room got the machines situated and went to the other patients room. About 15 min. later the doctor cane out and called for the coroner. I had turned my lights out. Then Miriam isn't sleeping tonight. I turned on my lights tv and decided I would wait for mornin. I made it. They were able to finally take me off life support nad I could **** ice. From all the times I was intubated and extubated I really had NO voice. I lost 50 lbs. But coming out I knew I needed salt and immediately started askin for it. I was diagnosed with ARDS secondart to POTS. They discharged me 2 dys later much to soon. I do have some damage to my brain from the lack of oxygen, but am aware of it, most of the time. I got to spend 2 weeks with my grandsons later in july last year. It takes they say 1 year survival and you are much more likely to make it. So I am counting today because if my husband hadn't decided to come home, I would have been found 2 weeks later. After that my pots was worse. Thats when I started getting IV's at home my husband starts them. I got 4bags /wk for months. I am now much better, although still healing. Thanks for all your support since I have joined this group. Also thanks for reading. Miriam :D:P:D:DB):P;):huh::)

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Hi Miriam,

Thanks for sharing your story. That must have been horrible to feel like you were going to die an not being able to help yourself. You are a real fighter. I am glad your husband came back home by accident because I would have never met you. I hope you continue to improve.

Happy anniversary.

Ernie

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Hi Miriam,

What a story. I am sooooo glad that you are here to tell it. It must have been frightening for you and the whole family. I can't imagine. It is amazing how things work out, your husband deciding to go back home. Sends shivers down the spine. Do I understand correctly, ARDS is acute respiratory distress syndrome, now was that from pneumonia that you caught? Were you sick prior to that, like with what you thought may have been a cold? Was wondering about that, since my mother-in-law just 3 weeks ago was complaining of a fever, severe abdominal pain on the right side mostly. She thought for sure it was a gallbladder attack. Even her md said her symptoms fit the bill for gallbladder and wanter her to go the er and he would contact some gi dr's that he knew. Well she did not want to go until later in the p.m., she was worried about wainting around in the e.r. By the time she went that late evening the dr.s were waiting and were ready to do a gallbladder removal. They did some tests first and could not find any evidence of gall problems, blood work, ultrasounds, ct scans could not find any problems with it. She told them she had an attack like this a few months prior and it had gone away. It wound up that she had bacterial pnuemonia. They saw it on an x-ray, she was not coughing or anything that would have tipped her or her dr's of pneumonia. Over the course of days in the hospital she did start feeling fatigued and coughing but she could not believe that she had it and did not know. She is out of the hospital but still home and has to be for 4 weeks.

My point of the story is, is how suddenly things can just happen and you can have no clue about it(at least she had none).

Happy Anniversary and many, many more healthy years to come to you!!!

Hope those grandchildren bring a great big smile to your face :P

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Guest Julia59

Wow---I know ARDS is a type of pneumonia--but how was it secondary to your POTS.

Congratulations on making it----you definately were the trooper---and still are! :huh:

Each day I learn more and more on the effects ANS dysfunction can bring---but oh my goodness, this is a new one in my POTS library.

I have become somewhat of a nerd since going through this ordeal---POTS, probable chiari, spinal issues, EDS---yada, yada......... :P Nerd in the way that I look up medical information all the time to learn about the ANS functions, dysfunctions ect. And now my new world of EDS and Spinal issues----WHAT FUN----it's like a treasure hunt for us medical information nerds.

What a nice supportive husband you have----i'm also very blessed to have the same.

I'm so happy to hear your doing so much better-------what a time you have had......scarey----- :D .

But now you are OK----and each day brings more healing.

I'll have a sleep study tomorrow----i've had some past respiratory issues in my sleep, and sometimes during the day. I was sent to a pulminologist a while ago and he saw some clouding on my lung x-rays, but my lungs sounded clear.

I barely slept on my last sleep study---but did doze a couple of times. This is when he noticed some lower oxygen levels. so this time he want's me to do two night. One tomorrow night, and one on June 20th.

Trying to keep a positive attitude.

Keep hanging in there, and happy to have you here with us, sharing your ups, and your downs----as well as all the encouragement you give us.

Julie :0)

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yes mine was Acute Respiratory Distress. No I was not sick before. It is secondary to pots due to the fact that my kidneys shut totally down. Its almost like God looked down and said your it!!!!! The reason it is 50-70% fatal is because its not diagnosed, I guess people don't feel sick till they are too sick to get help.

Thanks Miriam

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Your life is something to celebrate! Your story was horrible, it must have been really scary for you and your family. I'm so glad your husband decided to stop home. Funny how that works. I hope you keep healing and getting to enjoy your grandson.

Congratulations

Dayna

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Hi Miriam!

Congrats, you made it through your first year. You are obviously a very important person, with much work to do still here on earth. Otherwise, God could have taken you that day. I am glad you are still here, because I got to hear your wonderful story, and it gives me hope. If you can keep going after all of that, then in good conscience, I will likewise keep pushing forward too. Thanks for the push :D !

I know it has been a hard and tough battle. I, too, have done the lovely "bathroom passout" while performing the "Valsalva Manuvoer" - embarrassing beyond all belief, but at least take a few laughs where you can get them :lol: !

Hang in there, we are all with you. You need to be proud of yourself for fighting back from death, which is the toughest fight there is known to everything on this planet. Remember that fight when you feel down, and weak, or others criticize your illness. How many of them would have fared so well? Your inner strength was what made you different. Don't sell yourself short, we have plenty of people who can do that for us :P !

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Guest Mary from OH

God truly has special plans for you Miriam!!

It was not an accident your husband came back to your home that day one year ago. It was meant to be. You are one special lady. I cannot imagine the agony, both you and your family went through during the difficult time during the recovery from ARDS!! Now that you've hit your 1 year mark, I think a slight amount of relief can finally be shared among you and all those whom know and love you.

May you continue to have a "healthy" and joyous life!! You are on this earth for a purpose. May you learn what it is! I hope that even on your worst POTS days, you can recall the trauma that you overcame and realize how strong of a woman you truly are. You are an amazing woman whom I am proud to know and call my friend. Thank you for sharing your story with us!!

Take care and may your life continue to be blessed!!! :D:lol::P

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Thank you for sharing your story. I've read it in bits and pieces in your previous posts, but never knew how much you have been through. I admire your strength and will to survive through something so hard and horrible.

I didn't realize that POTS could cause one's kidneys to shut down. Is this a particular kind of POTS? Or is it b/c of additional complications--like diabetes?

With admiration,

Katherine

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Miriam, I am glad you were able to make it through all that difficulty, and come out alive, and with most of your body functions intact. What an ordeal!

Nina

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Miriam, You most certainly had a guardian angel with you and your husband last Memorial Day. Sometimes there is no explaining why we do what we do and the timing. You are constantly improving and have come so far from that horrible experience. Thank you for sharing your story. Linda

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