Miriam Poorman-Knox

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

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

Hi-Welcome, I had many of the same problems, until I saw Dr. Low. He put me on Inderal, as it "crosses the brain". This is better, he feels because midrodine doesn't, and he feels pots being an autonomic problem works. And it does. I also take .1? of florinef. Miriam

I have mastocytosis. Just give me a hairbrush or a tree. I take allegra and ativan, plus creams for it. I had premature mrnopause. I have osteoarthritis, but they aren't connected. This is truly one of the most annoying parts of this syndrome. It pops up EVERYWHERE, and it itches and itches. Luck Miriam

To add my 2 cents. Call ahead and ask if you are seeing the doc first then labs....to see if you can adjust the # of hours between. Also you can get transport if you are to weak or tired they will arrange it for you. It's not a bad drive from the airport, its nice country. If you cannot wait between for food just tell them. I know a couple of people had that problem so they fasted for the # of hours and took the shuttle to the hospital to have drawn. Miriam

Nina, When I went to Mayo and passed out there they told me not to drive for 6 months!!!!!!!! I said OK and left. My doctors know that the problem is only when standing. So if you don't argue, and as you are responsible, no problem. Miriam

I agree that we need t respect one anothe. This site is appropriate because we can just ignore people who get off topic, or who we can't "say something good about". I beliee faith is different from religion. So blessings to people is not religous. Regarding your friend, arent the seventh day adventistd the ones who come knocking at our doors trying to save us???????? I am a minister and believe that in a forum for support of a life altering illness we should respond to the need. Not proslethize. Perhaps we should send private e-mails. I am afraid to share my one year survival with this group now because it isn't necessarily pots related. Thank you for all you do. Miriam

I am confused. Probably we all are abit paranoid now. Is it not ok to respond to requests for parayers, or not to ask for prayers. I truly have not a clue about what started this. Miriam

Morgan, So sorry tis is happening. Please report this to the hospital or to HIPPA. It is a clear violation. See if the hospital has apatient advocate, and they can take care of it. Blessings. to you both. Miriam

Perhaps you could communicate via. fax????/or e-mail, although thats not usually as good an idea. Miriam

No you are talking basically about different paths. It is good to keep up with weight training as much as you can. The flu.... helps your BP to stay stable so you CAN exercise. Exercise is our friend. Although right now I am not a great example!! Miriam

And so it goes. Each one gives info where it is needed, and we help others. I am so glad this happenned. You must feel a bit safer now to go to that ER when needed. Those of us that are good at writing, should. I am so proud. I'm sending a wave to you Linda. Miriam

I LIKE THAT "WIRED AND TIRED" sign me up Miriam

It is possible. We should probably all be having our 24 hour sodium done every depending on our situation. There is an amount we should excrete in 24 hrs and also sodium should be I think 177 But chevk the info. thread and it gives the numbers there. If you are thursty you aren't drinking too much. Ask your doctor. what is best for you. Miriam

I would assume you are taking the fludrocortisone to keep your BP stable? That is different than what you take for weight training. Sorry to say, with this, trying anything like any steroid to bulk muscle will onkly harm you in the long run. The most important thing is to keep up with cardio and weight training. Miriam

Linda, Sorry such a sucky day!!!!!!! Perhps you could ask your doctor to issue a standing order for you so that when you need an I.V. its there. I get mine through home heath, they deliver supplies, and there are people who will come to your house to give IV's. It works so much better. As for your boyfriend. I'll just say it. It sounds abusive to me. Remember, we may have limitations however we don't have to accept that kind of stuff. Will write more later. I hope you can push some fluids tonight so you can rehydrate yourself. Miriam

Diane, I will happily reply and answe your questons. Tonight I'm fries, new medication reaction. Will tomorrow morning. The one thing I can say is to keep up with exercises on the floor, bed, etc. Keeping your lower body toned is very important. Cross Training is best Cardio, strength train, cardio etc. Finis stretching on the floor about 10 min. you are more likely to have problems with BP dropping after exercising. I think I would have tried the med longer, but thats me. I took midrodine and salt tablet(you can ask your pharmacy to order some)together and it worked.Also there is info on the site about salt. Sea salt is best. I have some that are little chunks and **** on salt. Sounds wierd, but you know you need it when you eat more. Will write more. You may e-mail me also Just go to my controls at the top. Miriam

Hi, This has been shown to affect many olympians, and people who exercise alot. I think that we exercised brcause it made us feel better. But we all crash the same. For 10 years I was the fitness director at a health club in Wisconsin and taught 4 classes a day and did the stair master for 45 plus demonstrating the machines. Was great until the great fall of 97.!!!!!!! Give it time, unfortunately we must. And ask questions. Miriam

Autonomic neuropothy is part of pots. It is a loss of feeling usually in your extremeties. I have it in my feet, hands and part of calf andfront of quadracepts. Neurontin works great. Dont have the pain that can come with it. Welcome. Miriam

Many prayer for your daughter, you and your family!!!!! I agree with the earlier post. Call themand ask for the results. Don't wait unless they really don't have then, which they will tell you. Obviously you are a very strong woman(as I believe WE all are). Keep us posted, as she is part of this family. I pray daily for us and will add her to our clergy prayer list. Can't hurt!!! Miriam

Jan, You are up on the cardiolical function. Perhaps asking about the brains connection in this syndrome. Dr. Low gave me Inderal, which crosses the brain saying that it was important. I started it felt a bit better, and just had the dose increased and addes a SR so its a continual release. I almost feel human. The thyroid, yours. Perhaps, how long on a particular plan before it needs modification. Mine was 4 since I went to Mayo, and changed my Inderal dose. And what to expect!!!!! I appreciate your posts. You are knowledgeable about cardiac issues. Your posts are helpful. Good luck. God speed Miriam

I agree with the pots related comments. My favorite is when people say"YOU dON'T LOOK OLD ENOUGH TO BE A GRANDMOTHER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So it can go both ways, depending on how we are feeling. Miriam

Stacey, You are in my prayers also, along with your dad and family. Remember I just went through similar stresses with my mother and step-father. The one thing IKNOW is that you need to set a boundary for yourself. It's OK to help when you can, and to do what you can for your dad, but its not OK to not take care of you!!! Please take time for you. Hugs Miriam

I would ask if you should havethis test with pneumonia!!!!!! It could make you much worse. If you are dehydrated and get more dehydrated with this test, not good. Blessings Miriam

JLB, Take a breath. The point is that in order to treat this syndrome their is some trial and error with medications. There is also some controversy as to wether this is cardiac or neurological. I am sure it is both. The heart has to pump the extra blood that is pooling in the lower body. The point my doctor made is that this is a syndrome and that the one area that is most important to be a ware of is keeping the blood pumping. JLB, it seems that you have alot of anxiety right now, perhaps it would be a good idea to speak with someone, who can know all about you. As for others trying to stop meds completely, as long as your docs ok it. The posts here have seemed to prove that one can go off meds for a short period of time and then crash. This is all to be discussed with your health care provider. It does take tie to get the correct meds, fearing you will drop dead perhaps is getting ahead of yourself. There are lots of treatments. Hope this helps POTS isn't life threatening, as a rule. Depending on YOUR PERSOnAL symptoms ets, pre existing medical problems. FOLLOW YOUR DOCtORs advice. But yes these 2 people didn't make it. They stopped their meds abruptly without drs knowledge!!!!!!!!!!!!! Miriam