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Why We Started This Why did we start APS Foundation of America, Inc.? We felt there needed to be a central location in the USA for Antiphospholipid Antibody Syndrome, its related diseases and general Thrombophilia information. We are independent and donating all of the costs for the website and forum to support our mission. Our mission is to spread awareness of APS and other clotting problems and for patients, family and friends to understand this disease. You can find our full mission and goals by clicking here: http://www.apsfa.org/aboutusf.htm
This
website has caught the attention of the National Alliance for Thrombosis and
Thrombophilia and researchers at various major medical facilities across the
United States. We have started our own Non Profit Organization so we can apply for
grants to be able to publish awareness materials and have a newsletter.
Please keep in mind that none of us are a
medical doctor. We are
just trying to learn more, offer support, and pass the word around about APS. We have an open forum for people who have Antiphospholipid Antibody Syndrome, their friends, family and caregivers. Our Support Forum is located at www.apsforum.com.
Thanks
for Stopping by!
All About Tina My name is Tina. I am 35 and live in Wisconsin, USA. I have had a long battle with Seronegative APS (SNAPS) and was finally diagnosed in 2002. My problems started out in grade school when I developed Fifth Disease after that I started having problems with headaches and blood noses, in high school I got the Epstein Barr Virus (EBV) and never have been the same since really. I had dizzy (vertigo) spells most of my high school and my first parts of college. My blood pressure would spike during those times, have problems seeing and speaking. My body would twitch and I would have these horrible headaches but I was told that it was anxiety and that I didn’t want to be in school. I was an A/B student. I don’t think so. So from 1985 to 1992 I really wasn't feeling well at all. I got a reprieve and finished up with my degree (BS in Public Health Education) and joined the military. But in 2000 my problems were getting worse again and left because of medical problems that they didn’t know about. In 2002, I started having more neurological problems. One night, I had a TIA (transient ischemic attack) with an amaurosis fugax (temporarily loss of vision in the eye). That got dismissed, as I was "too young to have these kinds of problems". They started me on aspirin and I stopped the birth control I had been taking as they were telling me that was the problem. Two months later I ended up in the hospital with a DVT (Deep Vein Thrombosis). They never did a full clotting panel on me that time. They said they did and that the tests came back normal, only to pull the records and find that the tests were cancelled. I never got a full panel until I started pushing for answers. That is when I got one positive test that was “equivocal” but somehow the hospital has lost that test result. I was started on Coumadin® and after much trial and error my therapeutic range is 3.5-4.5 because I am one of the lucky ones who has managed to re-clot on Coumadin®. However, since being placed on Plaquenil®, we have been able to reduce that my INR to 2.5-3.5. I also have to take aspirin. Recently, they have decided that my diagnosis me with a touch of Lupus. But now they said it isn’t Lupus because I all the sudden don’t have enough symptoms and my blood work is ok again. I guess you need to have everything happening at once. I know that isn’t true but that is the way the most doctors think. So, it is not just Thrombophilia with clinical features of APS and Thrombophilia secondary to Lipoprotein(a) and MTHFR. Either way I have clotting issues. I know there is current research looking into the connection of the Lipoprotein subgroups and APS. There is also a strong association with EBV and Fifth Disease and Lupus & APS. So, now I wonder how long I really was sick. Now thinking about it, I was never healthy. I always had some sort of cold, some sort of ear infection, always taking antibiotics or Dimetapp. I was always tired as a kid and just never could keep up with my classmates. I was always cold as a kid and would turn all these funny shades or red, white and purplish/blue. At the time, we just thought I got frostbite easy. I never really did ok in the sun. I got “sun sick” very easy. Getting doctors to listen to me and take me serious has been a battle, especially in the ER. I have had to start a medical symptoms journal. That is what helped me get my INR up from the 2-3 range to the 3-4 range (and the reclot cinched it). I have also started a photo journal for the times that my face is drooping but I know by time I get to the ER or call 911 and actually get seen it will be better. I have showed those pictures to my new neurologist who said that yes that is a TIA that is triggering the migraine, specifically verterbrobasliar TIAs. The pictures I had been taking helped save me and got the diagnosis on the record to increase the odds the ER will listen. The neurologist also felt what I was having in high school and college were TIAs, not the panic attacks they thought I was having. I am also taking pictures of the various rashes that I get. Those pictures have also helped me get on Plaquenil®. It was Livedo & Raynaud’s that I had and that is getting better now. I can put my hands in the freezer without gloves on now. I don’t need it as high anymore and I am not noticing my INR changes as much. J I have had a heart attack. The ER thought it was “acid reflux” and sent me home. After not feeling well for two months, I pushed for an answer and they did a perfusion study of my heart. That was a painful test. From the time they started injecting that Persantine & tracer, I was crying in pain. The cramp in my arm was crazy. By time the drug hit my neck and chest my vision was cutting out and the pain in my chest was nuts. My body, especially my legs felt like dead logs. They refused to reverse it. I ended up in the ER because the headache I got was so bad I was throwing up. They found a previous posterior MI (Myocardial Infarction aka heart attack). At the time, it was dismissed as a bad lead. One and a half years later, the angiogram shows my arteries clear so of course it was “acid reflux” and that perfusion study must have been wrong. Finally it has been decided that I do have Cardiac Syndrome X but my cardiologist won't write it down as that because he really doesn’t believe the syndrome exists in anyone. I have sent that perfusion study to several other medical professionals who say it is Cardiac Syndrome X – classic case. So, it is still being dismissed. Other than the small hole in my heart – some of the bubbles crossed over and some didn’t so that is in the air really – and no one has repeated that test, supraventricular tachycardia, the occasional run of PVCs & PACs and mitral valve prolapse that has gotten more pronounced over the years; it is ok. My kidneys have recently decided to give me problems but that seems to come and go also but is always blamed on hormones or salt even though it isn’t that time of the month and I watch my salt intake. My Lymph Nodes have been swollen for over a year now. They started out in my arm pits & neck (Supraclavicular & cervical) lymph nodes...now are in my groin to boot. They were movable at one point and time, now they are hard, not moving and in a chain. A radiologist confirmed these are lymph nodes via ultrasound and sees them and documented it. Some of these are the tip of the ice berg and run into my chest but these do not show up on a chest x-ray. My doctors were doing monthly blood draws, CT, etc to figure out what was going on. Nothing shows up in me. CTs, MRIs and Ultrasounds can miss bile stones the size of garden peas in me so why would I think a scan looking for lymph nodes would be fruitful. It now decided that all the sudden I just have large lymph nodes. Meanwhile, my lungs are getting more and more goopy and I start having more problems with the "GERD". I am maxed out on Protonix® and Zantac®. I really have to watch my sodium otherwise I am in trouble lung wise. I love water but will drown myself and have to take Lasix® just to shift the fluids out of my lungs. Have to eat small meals because of this "GERD". I just get such a blood rush it isn't funny...and pain...crazy. I don't want to eat but know I have to. I look like I have lost weight in my face but my gut has huge bloat. Doesn’t matter how much exercise I get. If I bend over at the waist too long, I feel like I am going to pass out. You know the ears buzz, the vision goes to grey and you don't know if you are going to puke, pass out or both....get all pale and sweaty...shock like really. It is almost like I am cutting circulation off to something in my gut. No more bending over to tie shoes. I have to be very careful now. My Raynauds/Livedo has gotten worse. Vertigo is coming back, which the neurologist, ENT and GP have decided was a microvascular issue many moons ago. Headaches are getting worse again, my guess, it is connected to the Raynauds/livedo which is also microvascular. I start having problems with cystitis again. Mind you I haven't had problems with this since 2002, shortly before I started clotting the first time around with the amarousis fugax and DVT. The urologist feels this is due to microvasuclar changes in my bladder from my autoimmune & clotting problems. I have the left sided weakness documented by a physical therapist which she said is consistent with her 80 year stroke patients. My balance is that of an 80 year old. This was a good day for me. I still have TIAs despite having a therapeutic INR and being on aspirin and Plaquenil®. The verterbrobasliar TIAs are building up have caused hearing loss and suspect are causing the increased loss of balance. I am tired all the time and hurt but this is not depression. Recently, my GP & I feel I had a small PE a few months ago. The ER was all interested right up to the point I had to correct them that I was on Coumadin®. As soon as they heard that, I was brushed off. They refused to do the VQ Scan because the d-dimer was negative. I just took my discharge papers and went home and kicked myself for not calling an ambulance the night before. One of those, they will call this a panic attack, even though it wasn't. My heart was missing a whole mess of beats and racing, cold sweat, nail beds were pale, lips were pale, couldn’t breath and felt like I was going to pass out. I tried to fix it at home by ruling out what they were going to blame it on – anxiety - but it didn’t work. I passed out and woke up in the am. Finally went in but, I wasn't as sick as I was the night before. Hind sight is always 20/20. I have learned to keep fighting and pushing for answers and to listen my gut. But sometimes, that doesn’t even solve my problem because my blood work can be misleading. My hospital has been burned several times by not listening to me. There are times I think I can get back to normal. (During my reprieve I was able to hold down a full-time, a part time, teach at the University and do the military drill thing....ok that was crazy...I will give you that.) But every time, I start getting back to "normal" or picking up my pace my INR drops or something else happens. My biggest problem is predicting how I will feel later on that week or the next day, etc. Vertigo is my biggest problem and now these recurring TIAs. APS makes it very hard to hold down a regular job and a normal life. I just go with it day by day do lots of volunteering. I can no longer do contract work or teach because of memory & health issues. That is it in a nutshell. Tina :o) All About Heidi & Todd Hello. My name is Heidi and I am 33 yrs old. Let me start off by saying that I do not have APS. My husband, Todd, does. He is 35 and we’ve been married since 2001, but have been together since 1995. We live in Michigan, USA in a suburb of Detroit. I work full time for a major health insurance company (Thank God too, we have very good health insurance) and Todd is currently working at Sears. This is actually his 3rd job since he was diagnosed. He has a hard time working because he needs time off for doctor appointments and ER visits. Employers just don’t understand employees being ill. We don’t have any children but we have opened our home to 2 spoiled rotten pups and 4 crazy kitties that we lovingly call our “zoo.” We do hope to have children in the future. As of right now, we are leaning towards adoption though because there is too much unknown (in our opinion) about whether APS can be passed along in families. Plus, there are plenty of children out there who need a good home. I don’t know very much about Todd’s health when he was growing up. I know he has broken a lot of bones and had a surgery on his eyes when he was fairly young and a few other unrelated surgeries, but I don’t think there was anything specific to indicate that he’s had APS all his life. His problems with the “mystery illness” started in 2000. He was hospitalized for a pleural effusion and his lymph nodes were enlarged. They did a biopsy and he was diagnosed with CMV and sent home. He had chest pains on and off for months (years actually) and the fluid around his heart eventually moved to being around his lungs, so he was hospitalized again in 2003 to have surgery to drain the fluid from around his lung. He was tested for Lupus those past two times and he tested negative. In July of 2004 he was hospitalized for a DVT in his calf and he finally got the APS diagnosis. I truly believe that his health problems from 2000 on have all been related to APS. We think that it was the CMV in 2000 that “triggered” the APS, and that he didn’t have a clotting incident until the DVT in 2004. Since his APS diagnosis he has had numerous TIAs (11 in 2006 alone) has also been diagnosed with vertigo, Raynaud's, Sjogren's, possible Neuropathy, Sticky Platelet Syndrome, osteopenia in his spine and he had a hole in his heart. In September, 2005, he started having Migraines as well. In 2006 he was diagnosed with 2 other clotting disorders, one inherited. I don’t remember the names of them; I will have to get that from his doctor. In April, 2006 he had his first TIA in a therapeutic INR range. He had the hole in his heart patched in June, 2006 and since then he’s been TIA free as far as we know. However, his migraines have severely increased since then. In July, 2006 he was scheduled for a non-APS surgery and it was cancelled due to an abnormal EKG. He was having bigeminy and PVC’s and PAC’s. He was connected to a 48 hour heart monitor and was put on medication for his racing heartbeat. In August, 2006, he went through Rituxan chemotherapy infusions in hopes that it would help his APS symptoms. Unfortunately we found out in October, 2006 that the Rituxan did not work for Todd. In fact, it made some of his numbers go up. This doesn't mean it won't work for other people though, so if your doctor recommends it, Todd and I think it's worth a shot. It HAS worked for some people with APS and is being used for Lupus as well. It’s experimental though. In 2007 Todd was put on long-term Lovenox to try and regulate anticoagulation. His INR was all over the place and was very hard to get under control, so this option was just easier on Todd and his doctors. He was put on a medication to control his cholesterol in 2007 as well. He takes about 7 or so medications daily, which I know is really nothing compared to some APS patients. Todd sees a hematologist at Karmanos Cancer Institute in Detroit and she basically manages his care. He does have a Rheumy, Cardiologist, and a Neuro who he also sees. They’ve basically told us that they’re doing everything they can for him and that we should report any new findings. So we’re just sitting still until the disease progresses, if it is going to. The one good thing, if you can call it a "good" thing, with Todd is that he ALWAYS tests positive for APS. He has the numbers and they are high. So we don't have to worry about the question of whether or not he has this disease. He does. Every time. At one point I thought that Todd felt ok overall and he used to have a few good days a month. I do think that he’s been getting better, or else he tolerates everything better now. He has been getting out of the house more volunteering at a local animal shelter and I think the interaction with people has helped him tremendously. There’s a huge difference in his attitude and overall mental health now than there was 6 months ago and I think getting out of the house and getting some sort of a life back has really helped him with that. We take things one day at a time really, and try to keep all of the Doctor appointments and tests dates straight. We are trying to learn as much as we can so that we’re prepared for the future. There is just SO much to this disease, and because it’s considered “rare”, there are so many doctors who are in the dark about things. It’s a shame that there are people who have APS and cannot get proper care. We are SO thankful that we’ve found the doctors that Todd has. We wholeheartedly believe that this disease is hereditary and will be passed on to any children we may have. My aunt on my father’s side has Lupus and with Todd having APS we believe that the risk of a baby being born with either APS or Lupus is not one that we’re willing to take. So as of right now, we’ve decided not to have children. We do have other options – adoption, sperm donor, foster – so we are planning on having a family at some point in our lives. Right now we are trying to get Todd’s disease and health in order before we start thinking about a family. This is our personal choice on the matter, and we may change our minds down the future, who knows. We may put it all in God’s hands and let nature takes its course. Only the future will tell. Thanks for reading, Heidi & Todd J
Page updated on: 01/01/08
The APS Foundation of America, Inc. website and forums are independently funded and maintained by Heidi and Tina. We do not receive any funding from advertising.
Website created and maintained by Heidi P.
DISCLAIMER: APS Foundation of America, Inc. website is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members is only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America, Inc. website is not intended to diagnose, treat, or cure. This site is for informational purposes only. If you think you may have a medical emergency, call your doctor or 911 immediately. |
