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zafyri

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Everything posted by zafyri

  1. I know it's been awhile, but has anyone from the states made that phone call to GARD? I didn't see an update about it...
  2. The pain felt like a charlie horse and a bruise at the same time. There are a couple of tiny little knots left in my calf, but the swelling, extra fluid, and pain have now moved to my ankle. I have a bit of a limp in my gate, but I walked the mile (2.5 km) to my daughter's daycare today before catching the bus for work. It was the first time I walked the route since before Bryssan was born. I'm doing ok. I had my pt/inr checked yesterday, after being on warfarin for a week and it was only 1.6, so they changed my dose, and i go back in a few days to check. As an aside, I have been wearing compression stockings for almost 2 years now. I have been very fortunate to have very good insurance that has paid for my shots while I was pregnant, but I don't know how those of us who have to always be on a shot can afford it, I know I couldn't.
  3. So, I'm posting this question to basically find out others' experience... I knew I had PSD before I got pregnant. I was put on Fragmin at 8 weeks, and told I'd be on it until 6 weeks postpartum. Well, six weeks was 5/21. I went to hemotologist on Friday 5/20, I had a pain in my leg while leaving. We did an ultrasound, it came back negative. I figured it was just a muscle cramp, and my dr didn't see any cause for me to need to continue on the shot. Well, on Tuesday evening, I noticed a red knot on my calf, and the pain I had felt on Friday was worse. I went to the ER. They did an ultrasound and a clot was present. I'm now on Arixtra and Warfarin. This being said...Has anyone been on a postpartum injection longer than 6 weeks? Should I have been on it a little longer? Is it possible the pregnancy and clot are unrelated? (I did do a lot of walking the weekend before and my calf had felt tight the entire week, I just thought I over did it.)
  4. I haven't had ulceration yet, but neither my major nor my minor veins work properly. To answer the original question...I went to a vein specialist and he said there was nothing they could do. That when someone comes in with damaged veins, its usually the major OR the minor and they would close that off, but to have it to both, they couldn't do anything. I've been wearing compression stockings for 2 years, my biggest problem with them is that they slide down my leg and bunch up just above my ankle and it gets painful because they crease red lines into my skin. As for exercise...I have to take walking very slow. I'm in the US, but use public transportation to commute to work, my walk to the stop is just over 2 km, and if i'm pushing the time and have to walk fast, by the time I get to the stop my leg feels like a lead weight that I'm nearly dragging. If i walk slowly, I can walk for days without issue, but even a fast paced walk pools the blood in my leg...and I'm never without my stockings if I'm on my feet. If i didn't wear them, my leg would be twice the size it is and that is already twice the size of the other.
  5. I know that with a normal pregnancy, at least in the US, provided there are no complications, they keep you only 24-48 hours after delivery. But with PSD, we're at a greater risk of postpartum complications. So, my question is, did anyone stay longer than normal for more observation after delivery? Were you worried about the complications? What about switching to warfarin postpartum and being monitored?
  6. So, I know this is years late for you (Allie) but as many people still read this post, I thought I'd put in what I found out.... So, last week I went into the ER with very low blood pressure, and I noticed it had been dropping slowly over the last few weeks. I thought for sure that it was due to the injections because it coincided with the start them. According to the doctor, and my mother-in-law (who's also a doctor), blood thinners shouldn't cause low blood pressure. but my mother-in-law explained this: Between the 1st and 2nd trimester, the baby/uterus grows upwards and pushes on the IVC, causing low blood pressure, but that as the baby begins to fall foward and your bell protrudes, it is less of an issue and your blood pressure should go back up. The baby pressing on the IVC is the reason why doctors tell you not to lay on your back for extended periods of time, esp for sleeping.
  7. I know that insurances are different around the world, so I'm not sure if this will help many people. here in the states there are programs that people can apply for when they can't afford their prescriptions. The injections are very cost prohibitive and my doctor's nurse helped me fill out the paperwork in order to get a discount. They assist in getting insurances to reduce out of pocket expense, and/or help to pay some or all of the cost. I was fortunate enough to then not have to pay anything. for now, as I've started on injections for my pregnancy, my insurance is covering the cost of my injections, but come January 1, I will have to start paying on them again. Knowing this, my husband and I are trying to save up some money now to help cover the cost then.
  8. I know my response is a little late, but... I've seen a clotting specialist who deals solely with our disorders and she said that an IUD is the only thing females could use for contraception.
  9. I'm here in the US, and here there is a new movement towards adding the information to your cell/mobile phone. Certain smart phones can even have programs for it, or you can just add it. The medical alert teams are being trained to search a person's phone for the term ICE (in case of emergency) for an important contact to call if something happens. within my ICE contact I have added all medications, my dr names/numbers, and all health issues in the notes section of my phone. For more information...check this out...http://en.wikipedia.org/wiki/In_case_of_emergency
  10. I had the same thing. But this was before I was diagnosed. The doctors didn't seem to be worried. On multiple occassions, different doctors have all told me that it didn't matter if I had superficial clots below the knee. That they were too small. Even when I went into the hospital with my PE and DVT, they never scanned below my knees. and my doctor then said it didn't matter. I believe it does. I feel that if they had checked below my knee, that I wouldn't have been so severe when I went into the hospital. Or if they would have at least done a D-dimer test on me at that time, they would have known that I had a clot. Have they done a D-dimer test on you? The superficial clot caused my leg to swell, but the DVT did not. I had no clue I had a DVT until they did the ultrasound and checked. I say you know your body, if you think it's serious, then you get that second opinion. I think with PSD, you can never be too cautious, this is our life at stake, and it's not worth risking, no matter what one doctor might say. And I felt like I was getting good care myself.
  11. It took me almost 6 months to get relatively stable. For me, I began to notice a pattern of high and low. My dr put me on an alternating dose of coumadin in order to help stablize me, he wanted it every other day, but I found that my body works more on a weekly cycle and that I stay more normal across the week if in the beginning, I take the higher dose, and in the end I take the lower dose. It seems kind of weird and that I would be too high at the beginning, and too low at the end, but that's not true, I've been tested at both "stages" in the cycle and have stablized. I also am very conscious of what I eat. It's not always easy to maintain the same intake of vitamin K each day. and with that, I try to make sure I'm taking the coumadin accordingly. I am fortunate that my dr also trusts my judgement and allows me to make minor adjustments as I see fit. I would never think to change anything in a drastic manor, of course, but be patient. Coumadin is one of the most difficult drugs to stablize in the system. And, if you can get to a once a month check, the minor changes day to day with be unseen. Even though Michael's INR was very drastic. The only thing I can suggest, is to have him become aware of his body. Pay attention to how he feels when he gets checked and it's low, and when he gets checked and it's high. If he can learn to be aware of that, he could make the minor adjustments to an alternating dose himself. (By minor adjustments, I mean taking the higher dose 2 days in a row if you feel it's low, or taking the lower dose 2 days in a row if you feel its too high). Then again, I'm not a dr and could just be blowing in the wind. This is what works for me.
  12. I have used both INRatio and Coagucheck. In my personal experience, INRatio requires less blood, and the finger stick is considerably less painful; however, you have to be a lot more accurate with your blood sample. My doctors generally used a pipette to pull the blood then direct it exactly where it needed to go. The coagucheck needs more blood, the finger stick is painful up to 24-48 hours later (sometimes I get a bruise) but not as difficult to test. When I was first being tested, it was at my pulmonologist's office. They all could use the machine to test me, even the assistants. They managed my coumadin with the INRatio until I was free of the PE. They recommended that I go see a hematologist of whom tested me to find out that I have PSD. Since then, they have been managing my coumadin with the Coagucheck in their onsite lab. I need my fingers for my job, so I hate the soreness that follows. They only draw blood if it's over 4 because according to the lab tech, the machine is only accurate up to that point, and once or twice a year for checking accuracy.
  13. I use Arixtra instead of Lovonox. But I only have to be on it when restarting warfarin therapy, and while pregnant.
  14. I'm only 27. I was told that I could never take birth control and that I could not take hormone replacement therapy when I became menopausal. There have been no known cases in my family, my parents refuse to get tested (they say they've lived their life, what happens, happens) My sisters are considering getting tested, as well as my cousins-I'm the oldest of this generation. One sister has had a baby with no complications. For the first six months that I was on warfarin for the PE, I told my hematologist that I did not want to remain on it permanently. He said it was ultimately my decision. I came off to be tested and my d-dimer was at 1 (normal being between 0-0.4)meaning I had to go back on for a time, no matter what. I had to go back on it for 6 more months, still vowing to come off and stay off. I knew what the warning signs were now, I knew I could keep a watch for them. I just recently came back off to get tested once again. It's so funny, but my worry over having a clot that went to my brain or my heart far out-weighed the worry I had while on the meds of whether or not I would bleed out internally. It was then that I made the decision to go on warfarin permanently. I told these feelings to my doctor and he assured me that the risk to bleeding internally is minimal, that most patients do very well on warfarin therapy. He said that he has patients that have been taking warfarin since the 70's. He says that they are all doing well, they live normal healthy lives. The only thing that really has to change while taking warfarin is your awareness. If you cut yourself, you have to be aware of the bleeding. If you fall and bump your leg, or run into something; watch the bruising. You can still have a healthy athletic diet, and perhaps the reason your dosage seems high to you is because you eat alot of green vegetables and need to counteract that. My doctor said I can still travel long distances, he's not concerned about that as long as I'm on warfarin, including traveling to Europe. He also said that I can remain in Drum Corps (I spin flags) that I just have to make sure I don't hit myself too hard, especially in the head. James is right, it is a personal decision. If you have good doctors, they will monitor your warning signs either way. If you feel your doctors are good enough for you seek others. Here in the US, there are too many doctors out there to suffer through not liking your doctors. Find ones that are willing to listen to you, that can help you, and will take care of you the way you want. I was lucky, I found most of mine on the first try. All of my doctors--derma, hema, GP, sleep, cardio, pulmonary, ob-gyn--communicate my case with each other. No one is in the dark about any of my conditions, they are working together to possibly link them being that 3 of them could possibly be hormonally enduced. You have to be active in your own health, you know what's best for you. I won't lie, it's intimidating and scary at first; but with time, it does get easier to cope. And we're all here to let you know that we empathize with you and you are not alone out there. I have been fortunate to not experience any known side effects from warfarin thus far, granted, I haven't been on it very long. I was vigilent in the beginning, checking for gum, nose, and other forms of bleeding. At first, I was so scared that I was going to bleed to death internally. I had this out look of well, I get to choose how I want to die...I can bleed to death internally, or I can throw a clot to my brain or heart. I laughed it off, but I was going through such turmoil that I never wanted to admit to anyone in my family, they were already worried enough about me that I didn't want to make it worse. It's become second nature for me to check the toothpaste I spit out for discoloration, as well as checking other things. In the beginning, yes it was the forefront of my mind, now it's in the background, I can live "normally" without thinking about it, I just do it.
  15. I have to admit that I don't know much about peri-menopause, but my assumption would be the hormonal changes could possibly be a factor in all of this. High estrogen levels can cause PSD. So, if within peri-menopause, you're estrogen levels are elevated, that could be making things worse.
  16. zafyri

    lovonox

    The bruising is rare for me, however, once in, I get a painful "cramp-like" sensation as the meds are absorbed/move through my body--or whatever you want to call it . Then the next day I have an elevated, itchy, red rash at the injection site. i become spotted with blotches and it becomes difficult to find a place to actually inject. (I have a hard enough time giving it to myself, can't barely give in stomach, have attempted to try other sites, ie: leg, but couldn't make myself insert it) anytime I have to be on lovonox, I dread it, knowing what awaits me. They have tried arixtra, but the same thing happens. The doctors say if I was allergic to the medication itself, I would have a worse reaction. They think I may be allergic to the preservatives, or something else in the meds.
  17. I have narcolepsy. I'm on 100mg of provigil, I was told it didn't interact with the warfarin. I haven't had any issues thus far. Each of my doctors know everything that I'm on and why. Provigil is helping with staying awake during the day, and still being able to sleep at night. At the moment, my narcolepsy is still fairly mild (we caught it early- although I show most symptoms, I haven't had much of the cataplexy.) but I know that it is progressive.
  18. It seems that there is a good deal of women with both PCOS and PSD within this forum. Have any of your doctors tried to link the 2 together? My hematologist was considering a case study, but hasn't really found any information connecting the 2. I'm not sure if he looked globally or just nationally. His reasoning was the fact that PSD can be caused by high levels of estrogen and PCOS is an estrogen dominant condition.
  19. First off, I'm so glad I found this forum, I've been trying very hard to learn about and research about all my ailments. it's difficult and daunting. My story... I'm 27 yrs old, no history in the family. So, October 9th, 2007: I get home from work not feeling well. I'm thinking flu, bronchitis, at worst pnuemonia. I decide not to go to school. I was in the bathroom when I felt a really strong heartbeat and nearly passed out in the bathroom. I didn't want to go to the emergency room (I know, bad decision on my part) so I went to lay down. When I got up in the morning, I felt better. Took my shower, and it was then that I started feeling bad again. I was lying on the couch. i asked my sister to hand me my phone to call someone to take me to the dr. (Didn't want her to miss any school, she was a senior) She argued that she would take me. As we were leaving, she was locking the front door, I collapsed on front porch. I mentally thought, "can I make it to her car?" The answer was no, I told her to call 911 (US emergency services) The fire and rescue got there first. My pulse was 160 and my blood pressure was in the 40s. They immediately gave me an IV and used it to chemically shock my heart. They had to do it again before I got to the hospital. They found a massive Pulmonary Emoblism that had spidered through my lungs. They were shocked that I was even alive. They also found a clot in my right femoral. They put an IVC umbrella filter to catch that clot and put me on coumadin and lovenox. It was a week before I left the hospital, november 8th, they removed the IVC filter. In April they did a CT scan and the PE was gone. They stopped my coumadin (i was taken off lovenox after coumadin was theraputic) and recommended me to a hematologist. He then tested me for protein S and C, factor V, VIII, and 2 other things. I only came back with Type III Protein S Deficiency. but he also tested my D dimer, and it came back at 1 (should be less than .4) he said I had to go back on coumadin. Lovenox was causing rash at injection site. Tried arixtra, since already irritated, not sure if there was any relief with switch. I am now back off meds to test again for a clot. My heart was checked and came back fine, I have been diagnosed with PCOS, and put on Metformin (glucophage) since I can't take hormones from PSD, and also with Narcolepsy (sleep disorder) on provigil for that. I also have a skin disorder Gougerot-Carteaud Syndrome (Confluent and Reticulated Papillomatosis) it's a keratinization disorder where your skin builds up excess protein. (I tried cure, but am allergic to the only known treatment. Ironically, I was in the hospital exactly 1 week before the PE with severe hives from the treatment--Minocyclene (in the tetra family).) I'm happy, relatively healthy- it's a slow process, I'm still trying to build up my lung capacity and endurance again. And I'm trying to live as normal a life as possible. I have a great network of support with my family and friends. My doctors have been great, all communicating together to get me healthy. I'm lucky to be alive, I know that.
  20. 1. Dr. L. Crain Garrot 2. Oncology and Hematology 3. Georgia Cancer Specialists 4. Marietta (Atlanta), GA, USA 1. Dr. Kempton 2. hematology (specializing in clotting disorders) 3. Emory University Hospital 4. Atlanta, GA, USA
  21. I'm not sure if you've left yet, and will even be able to read this post, but here is some input I have. I'm from the US. I know that when we travel for long periods of time, we can get traveler's insurance. I'm not sure if that is something that is offered for you in your country. Cost for medical, and everything else for that matter, can vary significantly depending on where you are going. I would look into seeing if your doctor could help locate a doctor in the area you are traveling to. If you like, email me, tell me where you are going, what kind of insurance you have, I will see what I can do on my end to make some phone calls and find a place for you to go. Shannan zafyricheilo@gmail.com
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