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Everything posted by bamas01woman

  1. Hey Juwels and fraggle, Thanks for the feedback. The first day I went when it was so thin that the machine wouldn't register a reading and my doctor asked what I had eatten. That the machine only did that when blood was to thin. She sent me to the hospital to have another test. It is a big difference from the doctors office testing by pricking my finger and dropping it onto the machine and instant reading. The hospital takes a vial of blood and an hour later the results come back. My range to stay in is 3.5 to 4.0 and that day it was 7.?. I had gotten like this when I was first diagnosed due to the lack of information. I wasn't that worried but baffled as to why it thinned on me. I go to a regular physican-family medicine for my routine visits, blood tests. My doctor moved here over a year ago from Canada and is the only physican in a 100 mile radius that has had a PSD patient before. Everything is handled with her but I go about 4 times a year to my hemo specialist in Birmingham, at the Kirklam Clinic. Anything comes up she is immediately on the phone with him and basically alot of the decisions on me are handled that way.....phone. It is over two hours to Birmingham from my home, and the hemo doctor is wonderful working with my regular doctor. I went back to check my levels and they were bottomed out......I was wheeled over to the hospital where I stayed for 11 days. I had a mysterious white blood cell count also. They regulated my blood with heprin, then shots, then coumadin. I am always visited each day by just about every doctor that works or uses the hospital. They always have tons of ?'s for me and even ask my advice. I don't mind, they are really interested in the PSD and basic living, to emotional stress and coumadin intake. bamas01woman
  2. Mia, The best thing to do , especially for your nerves, is to educate yourself. On this site you will find lots of links that will be helpful along with alot of people that has had experiences. I am glad that your pregnancy went well with PSD, I miscarried due to bloodclots and not knowing I had PSD at the time. Search all the forum even if the title doesn't apply there is usually so good information in the entry. To be on the safe side you may even want a second opinion as to what you should do with your PSD levels. bamas01woman
  3. Sharon, Although I do have thinner hair then before. I can't really blame it on the coumadin (warfarin) if it helps in this section of thrombophilia, there is a titile called side effects of coumadin and there is a person stating hair loss. If you could read through those entries it might help you. bamas01woman
  4. Nibarian, I wasn't diagnosed after my three TIA'S. I did, and sometimes still do, have very serious miagraines. They told me that TIA's leads up to a big stroke. I do get a little worried but time with the PSD and educating myself on any and all links to PSD has helped. I was 25 on my first TIA, and I am 29 now. What is your experience? bamas01woman
  5. Hello Madison2021, Did they get you straighten out on the coumadin? Was wondering what the outcome was on the dose of coumadin? bamas01woman
  6. Becca, an after thought on more information to TIA's or the numbness you have felt is in this section of the forum under thrombophilia on page 3 . bamas01woman
  7. Becca, I agree with James on this one. I have been through three, after being diagnosed with PSD in 2000. On my first one, I got a little run around until I found a doctor working the shift at the ER. I have had a couple different sayings on the TIA about it not showing up on the tests right away. I was luckly to find a caring, concern doctor. Research on the TIA links and it will help you better understand. Hope all goes well and keep us informed. bamas01woman
  8. Jack, I have a "crazy" INR at times, and most of the time I know the reason was something I ate. My normal blood pressure is always very low. Even when my range is over 4. Or as low as 1. It was hard at first to get it straight until we bumped up the coumadin. But my blood pressure has always remained low. bamas01woman
  9. tattyteddy, Hope all goes well getting your medicine into another country. I don't travel outside the US. However I do have a ? about the dose you mentioned of coumadin. How much was you taking that didn't raise your INR? How long did you take this amount? Thanks bamas01woman
  10. Krisliz, I didn't have any advice on the filters and this is really late. But I have been told about the filters in the past and was wondering what your decision was?? Did you have it removed? replaced? Hope all is well. bamas01woman
  11. Thanks James for the advice. When I spoke to my MD about this she suggested just to wear them on an airplane or in traveling. bamas01woman
  12. Hello everyone, I went to my doctor for some joint pain and swelling with alot of pain. The nurse came in to prick my finger for my levels. The doctor came in and told me my blood was too thin, to stop taking the coumadin (warfarin) for a few days and come back and have it retested. I take the maxium dose of coumadin that is allowed. I was wondering what others have had for advice when their blood is to thin? I am concerned not taking nothing for a few days, especially with the problems I am having in my joints. I have also experience alot of dizziness. She said this was because of my thin blood circulating. Has anyone experience their blood to thin? I feel weird not taking it since I have been on it since 2000 when I lost a kidney. Could the dizziness really be from the thin blood? I have NEVER been to thin! Any advice would be appreciated. Thanks, bamas01woman
  13. Hey there, Juwels, I was wondering on the pain in your knee, when you mentioned it moving around...how so? I have been to the doctor and she said it brutitis, and put on some meds for it. I haven't had bloodclots in my legs but have other places. Thanks, bamas01woman
  14. Hey, I was wondering although I have never had a blood clot in my legs, but am on coumadin for life, do I need the stockings. Would they help me? Is it a good idea for prevention? I don't do sports anymore , now I get to tired and my legs feel like jello afterwards and cramp alot, all I do is nessacary things around the house. I would like to get back into something. The doctor said it was brutitis- brusing from the kicking. That my legs just weren't use to being used to much. bamas01woman
  15. Hello there, Swim dude, I am glad you started this topic. I am/was a veryyyyy active person until I was diagnosed and put on coumadin. I even sold most of my riding horses from "the gitters" of being scared. My two children are in karate, they have a dedication for it. About a week ago my daughter asked me to watch her do some of her kicks on a punching bag. Watching their practices ..seeing it and doing it are totally different, but nevertheless here I go showing her and kicked the bag. A few times. I didn't feel anything at first but the next day my knee was sore, then my ankle. Over the next few days I was hurting. I thought it could be a clot, but my other knee and ankle started hurting, then my elbow and wrist. Hurt is not describing the pain....but then after a few hours of laying down it isn't so bad. Then I am up again and after about 30 min. or an hour I am hurting again. When I put my feet up they throb. I am 29, am a little built from 22 years of gymnastics (that I gave up when diagnosed with psd). I am going to the doctor to check this out but was wondering any info on anyone having this.....my doctor is great but I am the only psd patient these parts have heard of. Is there any tests that I should asked to be performed in our "not so modern" hospital. I have never had this problem before. Thanks to any advice. bamas01woman
  16. Hello to all, I am sorry you didn't get a response, I sometimes spend my free time reading all the posted entries. (new and old) I even read in the pregnancy section although I am not pregnant or able to have any more children. Leo, I am sorry to hear of your loss. I lost a baby that I delivered a few days before my 6th month, and all my miscarriages took a toll on me as well. I have two children and am very thankful, then a hysterectomy at 24. I am glad to have found this site, being from one of the smallest towns in Alabama modern technology is a late arrival. The site has probably been a lifeline for me. Take care and Keep your heads up!! bamas01woman
  17. I was surfing the net today on medicines that interact with coumadin. My doctor knew I was on coumadin and said that the medicine he was prescribing did interact with coumadin but that it was the miligram (amount) that would interfer with it. Have you ever heard anything on this, that the amount taken is what interferred not the medicine itself. As for now I am not taking the medicine, I do like some of my doctors but fine out alot that only they know about as much as I do on psd at times. Do you take medicine with your sleep apnea Zarin? bamas01woman
  18. Along with having PSD, I was diagnosed today with having nacrolepsy. I was given a prescription to take medicine to help keep me awake. It is suppose to be what triggers my migraines and dosing on & off during the day. I was wondering if anyone else had any sleeping disorders and what the took for it? Thanks, bamas01woman
  19. Hello there, Hope this finds you feeling better and more informed from the site. Among other things I was depressed becuz I didn't know there were so many ppl out there with PSD. I was wondering where you lived? It would sound like if you lived in the USA you will be covered under Medicaid. bamas01woman
  20. Hello, I would like to apologize for saying that I have never had migraines before, I meant to write- more often then before. Glad I was rereading this area. Thanks, bamas01woman
  21. bamas01woman


    Hello, What kind of surgery are you having? This may be a factor of the mood swings. Having any kind of surgery will have a person worried, but having it with PSD makes the rate increase. Maybe afterwards you will get better rest and your mood swings will decrease. I have been on the shots for a long time and never had a reaction. So Good Luck and keep us updated. bamas01woman
  22. Liz, Hello there. As far as routine problems, I do have alot of them. If you would define the problems or want to ask some questions, I would be glad to share what I have and am still going through. I am even on SSI at 28 for PSD. I have had TIA'S and bloodclots. I have been hospitalized so much I joke that I help pay for the new parking lot the nurses have now. There are alot of people on here that can help you like they have me. Would you put some specifics down and we can discuss them. Before I found this site I thought I was alone, now I have chatted with, educated myself (and my own doctor), and even feel alot better with PSD. Never thought that would be possible. But it is, because it isn't going anywhere. So welcome to the site, and just ask some questions and people will help or tell you some of their insites. Your friend, bamas01woman
  23. Hi Violet, I am on coumadin for life as well, and a very high dose. I also use the shots every so often when my levels go down. I had to make the decision you are deciding on 2 wks ago. I broke a tooth off in my gum and had to have it cut out. In order to do this I needed to be put to sleep, failure of numbing properly in the passed. I stopped my coumadin and went on the shots. I will start my coumadin back as soon as my mouth heals and their are no signs of bleeding. I was scared but the pain of the tooth gave me the will to get through it. Bless of Luck to you! bamas01woman
  24. Hello, this is an area that is not truly known to me on the side effects. I do have lots of migraines that I have never had before. Also so many are different on this medicine, I was tested to see what I could take to thin my blood. But my body doesn't like it, rejects it now. Do hope you are or will adjust to it, they say it is the best. They (doctors) but like so many others on here one says one thing and another disagrees. Do be careful and watch this medicine. Just advice, from experience myself. Lots of luck. bamas01woman
  25. I do apologize for 'the not on coumadin'. I meant not on plavix. Sorry for the typo. Thanks
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