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Randi Free

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About Randi Free

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  1. My daughter is seeing a new doctor and he thinks all or most of her problems might be polymiositis and not POTS. She was hospitalized for 3 dyas in SApril unable to walk. At that time her CPK was 279 which is hisher than normal. Her cpk is now over 500. Her legs are still very painful, everything hurts all the time. Her heart rate is always high no matter sitting, laying down or standing and she continues to fall and have episodes where she cant walk unaided. I know there are 3 different types of polymissitis and one can effect heart rhythm. Has anyone else had a doctor suggest this or know a
  2. Pat, Please check out the ACOR list for Gyn cancers. There is wonderful info from others with your diagnosis. Randi
  3. I am so sorry you are having to deal with this. The only advice I can give you is to get as healthy as you can to withstand the chemo. I wasw diagnosed with stage 3 colon cancer 11 years ago at age 41. I was well over a 100 pounds overweight. I had high blood pressure and poor kidney and liver function test results. I was having heart palpatations. Before I started chemo I consulted a naturopathic doctor who helped me plan what herbs and supplements, vitamins I wanted to take and what things I needed to eat. I also took up tai chi. I did 6 moths of chemo thru a catheter placed in my chesy wall
  4. My daughter saw the neurologist today. Except for her abcess wounds she is doing well with most iof her POTS symptoms. He went over all of her test results, inpaitent and outpatient. He did no big tests just neuo work up exam. He says he wants to repeat her MRI in 2 months to rule out MS but he doesn't think that's it. He ssays she has indications of a nerve disorder and a muscular disorder. When not looking she can't tell if he is raising her toes and fingers or lowering them. She can';t feel vibrations on her legs, feet or hands. Her reflexes on her knees and ankles have come basck after bei
  5. My daughter's surgery went well. She did have some problems with excessive bleeding on the left side. She now has 6 very large incisions on both hips/upper thigh areas. She was released from the hospital last night after an 8 day stay. They still have no idea why this happened to her. I will be cleaning and packing her incisions daily with weekly visits to the wound care clinic. Every time the nurses got her up to walk her pulse would zoom to 150 or more. Her b/p was low at 70/40. I had to give them a crash course in POTS as none of the nurses had ever heard of it. Thanks for all the good wish
  6. You may remember I wrote about my 23 year old daughter being in the hospital with abscesses since last Thursday. Today they decided that surgery is needed to get rid of them. She has been on antibiotics for 9 days, 6 of them in the hospital on I.V. antibiotics. They drain 5 of the 15 abscesses and pack them every day while she screams in pain. They will give her general anesthesia tomorrow and expect her to be in the operating room about 1 to 2 hours. I will talk with the anesthesiologist tomorrow (surgery at 7:30 am mountain time) but I don't know what special concerns a POTS patient might ha
  7. It's interesting that you mention chicken pox. My mother had surgery on June 2nd for trans tracheal oxygen and developed shingles while in the hospital. She had come home and was recovering really well. On June 15th something happened and she couldn';t breath and was confused. I called an ambulance and we ended up in the ER where they said her white blood count was elevated indicating an infection of some type. She unfortunately died just 3 hours later so I don't know what the cultures showed. Mom lived with us and I've mentioned to my daughter's doctors that mom was recovering from shingles a
  8. I wrote last week about my daughter developing cellulitis on her hip. She was seen last Monday and put on augmentin. Tuesday it was worse and she went to the immediate care clinic where they thought it might be MRSA. They put her on Septra. By Thursday she was in excrutiating pain with 7 abcesses on both hips and thighs. We went to the ER and she was admitted. She now has at least 15 abcesses, 5 of which are drained and packed with gauze every day. She is on a dilaudid pain pump plus her klonipin. She was put on Vancomyacin and 3 other antibiotics until MRSA was ruled out. It's a staph infecti
  9. My daughter developed a sore spot on her left hip Friday. She ran a fever and had a headache all weekend. Today the spot is the size of a silver dollar and is swollen and very painful and red. She has two more starting on her right hip. The doctor diagnosed cellulitis. He said the fever is caused by this. He put her on augmentin, drew circles around the effected areas with permanent marker and told her go to the ER if it spreads outside those marks. He says poor circulation from the POTS could cause this. I've never heard of that. Has anyone had this? Randi
  10. Pulse ox which is low can cause tachycardia but I don't think tachycardia causes low blood oxygen. I have a pulse oxometer at home and we check my duaghter often because it gives an accurate heart rate. her pulse ox is always about 97 and we live at 7000 feet elevation so it will run a little low.
  11. Every time I have been anemic from blood loss I have craved ice, just had to be constantly chewing ice. My doctor told me this is a very common symptom of anemia. Randi
  12. My 23 year old daughter has anxiety disorder. She was diagnosed with it at age 12 right after a bad case of mono. and my stupid oncologist telling us I might only have months to live. Doubly whammy for her and she was diagnosed with depression and anxiety. When the POTS symptoms first started her PCP did think the elevated heart rate was due to anxiety from being in his office even though we told him it happens at home. She had a good cardiologist listen when she showed up at the ER with chest pain. An abnormal EKG led to a 3 week event monitor which showed heart rates of 150 or higher when sh
  13. Richard, I'm fairly new to this but what you describe sounds like it could be POTS. My 23 year old has the rapid heart rate and fluctuating bp. She also has her legs just give out with no wrning. This can last from a minute to 3 days with her unable to walk. She is going to have an EMG to test her muscle/nerve connection. She also had a positive tilt test. Randi
  14. Maxine, Is your brother aware of the colon cancer support group online? I've been a member for years and like this group the people on the colon cancer list know more collectively about the latest treatments than any one doctor could possibly know. Randi
  15. My daughter is on norpace. Before starting it she had an ekg that showed prolonged qt intervals. The cardiologist wasn't concerned as he attribites it to POTS. This was 3 months ago. She's been on norpace with mild improvement. Does the literature on this drug call for repeat ekg? randi
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