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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
OK, before I even start, I know this will be long, so I appologize in advance.
First of all, am I the only person who finds it absolutely impossible to get to speak to a dr. on the phone? Sometimes the assistant is helpful, but sometimes, I REALLY want to speak to a dr. There are some questions the assistant cannot answer.
Anyway, here's my story. My mom had a stroke when she was only 34. She's fine - full recovery way back when. A family aquaintance who is a dr. (rhuematologist) was always puzzled by why my mom had a stroke so young. He asked her to come to his office for tests. She did, and it turns out she has a disorder - something to do with "antiphospholipid". He told my mom that my sister and I should get tested because we may have it, and it causes miscarriages. So my sis and I both got tested and we were both fine- this was a while ago.
Now, 2 weeks ago, when I went for the NT scan, I had to meet with a genetic counselor. She told me that because my mom had a stroke under the age of 50, I am at an increased risk of having a blood clot disorder called thrombosis. She said that I should get tested for it, but not to be alarmed, it should be fine unless I'm flying. I'm flying in 2 weeks!!!!! We are going to Israel! They said that a hemotologist should do the test.
So, I called Bruce, the family friend Dr. even though he wasn't a hemotologist, I figured he knew my whole background. He wouldn't get on the phone with me - which really ****** me off. The secretary said he said to make an appointment and come in to talk to him. So I had an appointment scheduled for today ( I called on Monday, this was the earliest he could see me), and I get a call to say that the appointment is cancelled. I call back and she said the earliest he could see me is next Thursday. I stressed to her how time sensitive this is, and she yelled "HE'S IN THE HOSPITAL. HE'S SICK!" I had no idea that's why he was cancelling, and said "Oh, I'm so sorry". I then asked if there was a hemotologist they could recommend. She recommended one.
So, I tried to make an appointment with the hematologist, and the secretary there took my insurance info and SS # and then said she couldn't make an appointment until she got records faxed from my dr's office.
All I need is a simple blood test!!!!!!!!!!!!!
So, she was supposed to get back to me to schedule the appointment , and tis been almost 4 hours and I haven't heard from her.
DH suggested calling my OB to see if he could order the test. I called, and left a message with the receptionist, and the assistant and nobody has called me back!
Its 3:53. If they don't call back in 8 minutes, I don't think they will.
What should I do? What would you do? Am I overreacting!?!
I mean, my flight is on 7/15. Blood work usually takes a week - I need to get this done ASAP to make sure its safe for me to fly, right??
What would you do? Anyone have this condition?
Thank you so much for reading all this!
Message edited 6/26/2009 7:11:57 PM.
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Posted 6/26/09 3:53 PM |
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Long Island Weddings
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LSP2005
Bunny kisses are so cute!
Member since 5/05 19458 total posts
Name: L
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
I would call the ob's office back now.
I wrote the response fast so you would see it and now will write the rest of what I want to say. Depending upon the test, some results can be obtained within 24 hours electronically by the doctor so you have two weeks and that should give them enough time to give you the test and turn around and get the lab results.
I am sorry that your other doctor is in the hospital and the fact that the receptionist yelled at you. She is prob under a lot of stress - not that it excuses her yelling - but I think she is prob freaking out since I am assuming it was unexpected. Does your other doctor have a nurse practicioner assisting him? If so, they may be able to order labs for you.
Message edited 6/26/2009 4:03:25 PM.
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Posted 6/26/09 3:59 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
OK, I'm a dumbazz!!!!! I was about to call OB back, and I saw my phone was on vibrate, and there was a VM. The assistant called and said the Dr was called to the hospital, but one of the drs will call me back, and to make sure I have my phone on!!!!!
But, I feel better that someone is calling back!
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Posted 6/26/09 4:05 PM |
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Sassyz75
Turning a new page
Member since 5/05 9731 total posts
Name: Dina
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
I have thrombophilia- Thrombophilia is sort of a catch all phrase for many different clotting disorders- I have 3 of them, two of them genetic.
The thrombophilia bloodwork is rather extensive- about 25-35 vials and takes about 2 weeks to get back, so I'm not sure you would even get the results back quick enough. I had the blood drawn at the lab and did not go to a hematologist.
I go to a perinatologist b/c of thrombophilia and am on bloodthinners- although, I did have a healthy daughter w/o care of peri OR bloodthinners...
I would, like others suggest, talk to your OB. if you have had no problems, that everything will be OK.
If anything you could ask your OB if maybe taking a baby asprin might be a good precaution for you- even before you get the labs done... I take one every day along w/ prescription blood thinners which are injected
Message edited 6/26/2009 4:12:07 PM.
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Posted 6/26/09 4:10 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Posted by LSP2005
I would call the ob's office back now.
I wrote the response fast so you would see it and now will write the rest of what I want to say. Depending upon the test, some results can be obtained within 24 hours electronically by the doctor so you have two weeks and that should give them enough time to give you the test and turn around and get the lab results.
I am sorry that your other doctor is in the hospital and the fact that the receptionist yelled at you. She is prob under a lot of stress - not that it excuses her yelling - but I think she is prob freaking out since I am assuming it was unexpected. Does your other doctor have a nurse practicioner assisting him? If so, they may be able to order labs for you.
Thank you so much for the advice. I don't the the other dr. has NP. I really only saw him on time in the fall to get tested for antiphospholipid. He knows my whole family from a beach club we all belong to. Our families aren't close, but we've known each other for years. I hope he's OK too - I felt guilty for worrying so much about me when he's in the hospital - but I do have to get these tests done.
I'm glad one of the drs from the OB office will be calling me from the hospital. She just left the message at 3:59, so my ringer is on, and the phone is right next to me. I just want to get this done!!!!!
I would really hate to cancel this trip, but if we have to, I'd rather know sooner - we are visiting DH's Aunt, and we had to cancel this trip once before due to terror threats at the time. If we don't go now, I don't know that we will.
thanks for the advice and for listening!
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Posted 6/26/09 4:13 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name: Donna
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Your OB should be able to help yo0u and rush the test results. 3
I have some Thrombophilia gene mutations and my OB is the one who found them. He ran a Full panel of tests. The results were in in one week.
I think the chance of something bad happening are very small, especially if you have been tested before and nothing, but I would err on the safe side just for peace of mind and bug the OB!
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Posted 6/26/09 4:18 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Posted by Sassyz75
I have thrombophilia- Thrombophilia is sort of a catch all phrase for many different clotting disorders- I have 3 of them, two of them genetic.
The thrombophilia bloodwork is rather extensive- about 25-35 vials and takes about 2 weeks to get back, so I'm not sure you would even get the results back quick enough. I had the blood drawn at the lab and did not go to a hematologist.
I go to a perinatologist b/c of thrombophilia and am on bloodthinners- although, I did have a healthy daughter w/o care of peri OR bloodthinners...
I would, like others suggest, talk to your OB. if you have had no problems, that everything will be OK.
If anything you could ask your OB if maybe taking a baby asprin might be a good precaution for you- even before you get the labs done... I take one every day along w/ prescription blood thinners which are injected
Thank you so much for sharing this info. Now I'm really scared! The dr. should be calling me back. Was thrombophilia a problem before you were preggo? I flew to Europe and Hawaii before with no problems at all. I don't know that i have it, I only know that I am at an increased risk for it. I do know that I do not have antiphospholipid disorder. ARgh!!!!
My mom was on baby aspirin since her stroke.
MY OB told told me it was OK to Israel a few months ago.... he must have known about my mom's stroke - it has to be in my chart................
I'm so confused! How did you know to get tested?
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Posted 6/26/09 4:20 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Posted by dm24angel
Your OB should be able to help yo0u and rush the test results. 3
I have some Thrombophilia gene mutations and my OB is the one who found them. He ran a Full panel of tests. The results were in in one week.
I think the chance of something bad happening are very small, especially if you have been tested before and nothing, but I would err on the safe side just for peace of mind and bug the OB!
Thank you so much! I wish I called the OB in the first place instead of the rhumotolgist - it was the genetic counselor who had me nuts thinking I needed a specialist. I hated her!!!!
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Posted 6/26/09 4:23 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name: Donna
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Posted by spa118
I'm so confused! How did you know to get tested?
Many High Risk Dr.'s or patients who are high risk have the testing done. My OB did it because I had 3 pregnancy losses and it could cause M/C's. I take a baby aspirin a day and an extra high dose of Folic Acid with it .
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Posted 6/26/09 4:24 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Posted by dm24angel
Posted by spa118
I'm so confused! How did you know to get tested?
Many High Risk Dr.'s or patients who are high risk have the testing done. My OB did it because I had 3 pregnancy losses and it could cause M/C's. I take a baby aspirin a day and an extra high dose of Folic Acid with it .
Thank you for sharing. I'm so sorry to hear about your losses.
I was originally tested for the antiphospholipid disorder way before TTC because Bruce said that if I had it all I needed to do was take baby aspirin when preggo....
The genetic counselor said that what I was tested for was just one of many.
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Posted 6/26/09 4:30 PM |
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Sassyz75
Turning a new page
Member since 5/05 9731 total posts
Name: Dina
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Posted by spa118
Posted by dm24angel
Posted by spa118
I'm so confused! How did you know to get tested?
Many High Risk Dr.'s or patients who are high risk have the testing done. My OB did it because I had 3 pregnancy losses and it could cause M/C's. I take a baby aspirin a day and an extra high dose of Folic Acid with it .
Thank you for sharing. I'm so sorry to hear about your losses.
I was originally tested for the antiphospholipid disorder way before TTC because Bruce said that if I had it all I needed to do was take baby aspirin when preggo....
The genetic counselor said that what I was tested for was just one of many.
that is true- there are quite a few thrombophilia disorders... I found out b/c the fertility doc I was seeing ran the panel (think it is his standard)- he was concerned b/c of the circumstances under which my DD was born (went at 36 weeks, rush c-section, all around crazy).
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Posted 6/26/09 4:42 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long
Its been 2 hours and still no call from the dr. I called again because it was almost 6 and I thought the office would be closing, I got the service, and left a message - am I crazy!?!
I just want to go get blood work done at the lab tomorrow if at all possible, or set it up for Monday AM
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Posted 6/26/09 6:03 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
UPDATE: A doctor from the practice did call me back - just before 7. It was one that I never met before, and he was sooo nice. He said that it is the genetics counselor's job to scare me, and I shouldn't be too scared. He thinks it will be fine for me to fly. Worst case scenario, I might have to wear compression stockings. He said to make an appointment for Monday at Quest, and we should have the results in a week. I feel so much better. Thank you ladies, as always for all your advice and support. I love this site, and appreciate all of you so much!
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Posted 6/26/09 7:16 PM |
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dm24angel
Happiness
Member since 5/05 34581 total posts
Name: Donna
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by spa118
UPDATE: A doctor from the practice did call me back - just before 7. It was one that I never met before, and he was sooo nice. He said that it is the genetics counselor's job to scare me, and I shouldn't be too scared. He thinks it will be fine for me to fly. Worst case scenario, I might have to wear compression stockings. He said to make an appointment for Monday at Quest, and we should have the results in a week. I feel so much better. Thank you ladies, as always for all your advice and support. I love this site, and appreciate all of you so much!
Glad to hear it. I hate feeling anxious waiting for Dr's etc so I understand how you were feeling.
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Posted 6/26/09 8:18 PM |
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Sassyz75
Turning a new page
Member since 5/05 9731 total posts
Name: Dina
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
glad the doc called you... be prepared- it's a lot of blood to do the thrombophilia... about 20+
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Posted 6/26/09 11:01 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by Sassyz75
glad the doc called you... be prepared- it's a lot of blood to do the thrombophilia... about 20+
Thank you! I did the Ashekenazi Jewish screening, which was pretty similar. At this point I am so used to giving blood I don't care!
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Posted 6/26/09 11:41 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by Sassyz75
glad the doc called you... be prepared- it's a lot of blood to do the thrombophilia... about 20+
Thank you! I did the Ashekenazi Jewish screening, which was pretty similar. At this point I am so used to giving blood I don't care!
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Posted 6/26/09 11:41 PM |
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LoveMySMT09
<3mySMT.AJT
Member since 1/09 2623 total posts
Name: VT
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
i dont understand, why does a hemotologist need to the blood panel? I have thrombophilia and my OB did it in the office! Im sorry youre going through all this
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Posted 6/27/09 12:10 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by sweetsurprise09
i dont understand, why does a hemotologist need to the blood panel? I have thrombophilia and my OB did it in the office! Im sorry youre going through all this
A hematologist doesn't need to do it - the genetic counselor told me that, but after finally spoke to a dr. from the OB's office, he said that he would order the blood work from quest, and not to worry. HE said he thinks its fine for me to fly, and that we are taking the test to ease my nerves.
Has thrombophilia affected your quality of life at all?
Thanks for the
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Posted 6/27/09 12:28 PM |
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WNA01
my 2 boys
Member since 10/08 4240 total posts
Name:
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by spa118
A hematologist doesn't need to do it - the genetic counselor told me that, but after finally spoke to a dr. from the OB's office, he said that he would order the blood work from quest, and not to worry. HE said he thinks its fine for me to fly, and that we are taking the test to ease my nerves.
Has thrombophilia affected your quality of life at all?
Thanks for the
Sorry to hear ur stressing out!! I had something similiar as a PP has. 2 mc in a row and then had bloodwork done by my RE. Came back as antiphosolipid antibodies. I was sent to a rheumatologist as well as a hematologist. (this was b4 i got pregnant again the 3rd time) I dont see the rheumatologist anymore, i just see a hematologist and a high risk ob bc of recurrent pregnancy losses and clotting issues. I am on asprin and lovenox (injectable blood thinners). will have to be on asprin for the rest of my life bc it is a lifelong issue. As far as the clotting factors affecting my quailty of life - i had 2 mc back to back so yea it has, however, its something that is easily treatable. Other than that im fine. If u already tested negative for it i dont understand why ur genetic councelor scared the crap out of u... I think u should be fine.. If by chance u do have a clotting issue , it is easily corrected. Good luck and KUP!!!!
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Posted 6/27/09 1:48 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Sorry to hear ur stressing out!! I had something similiar as a PP has. 2 mc in a row and then had bloodwork done by my RE. Came back as antiphosolipid antibodies. I was sent to a rheumatologist as well as a hematologist. (this was b4 i got pregnant again the 3rd time) I dont see the rheumatologist anymore, i just see a hematologist and a high risk ob bc of recurrent pregnancy losses and clotting issues. I am on asprin and lovenox (injectable blood thinners). will have to be on asprin for the rest of my life bc it is a lifelong issue. As far as the clotting factors affecting my quailty of life - i had 2 mc back to back so yea it has, however, its something that is easily treatable. Other than that im fine. If u already tested negative for it i dont understand why ur genetic councelor scared the crap out of u... I think u should be fine.. If by chance u do have a clotting issue , it is easily corrected. Good luck and KUP!!!!
Thank you for sharing. I'm so sorry to hear about your losses.
I tested negative for antiphospholipid disorder, but I was never tested for thrombophilia. I'm getting the blood drawn on Monday.
I am feeling better about everything having talked to the dr's.
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Posted 6/27/09 4:54 PM |
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LoveMySMT09
<3mySMT.AJT
Member since 1/09 2623 total posts
Name: VT
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by spa118
Posted by sweetsurprise09
i dont understand, why does a hemotologist need to the blood panel? I have thrombophilia and my OB did it in the office! Im sorry youre going through all this
A hematologist doesn't need to do it - the genetic counselor told me that, but after finally spoke to a dr. from the OB's office, he said that he would order the blood work from quest, and not to worry. HE said he thinks its fine for me to fly, and that we are taking the test to ease my nerves.
Has thrombophilia affected your quality of life at all?
Thanks for the
it has and hasnt. the only way it has DIRECTLY affected me is the lovenox shots everyday. im heterozygous for factor V laden, something with homocystine (i dont remeber exactly what ), have protein S defficiency, etc. my OB was just afraid of blood clots in my placenta so i was started on lovenox at about 16 weeks. no biggy at all, just one injection everyday. I also have a congenital heart defect so the OB thought the lovenox would also help prevent clots from that. two birds with one stone sort of thing.
im indirectly affected by it because I inherited these wacky genes from my father who did have DVT and died at 56 from an aortic dissection. the DVT is definitely directly related to the thrombophilia - the jury is out as to whether or not the dissection is related. im more worried that my will inherit these genes too.
all in all im lucky. my fathers passing from this has provided me with the info and education about what he and I both had/have, and now I'll be able to take better care of myself, and my too if need be. he's my guardian angel in that way
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Posted 6/27/09 9:34 PM |
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McLovin
LIF Infant
Member since 3/09 119 total posts
Name:
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
sorry to crash over here. We study clotting disorders in my lab. There are so many different disorders that can cause thrombosis, as alot of the previous posters said. Hopefully you will get all testing done and it will all come back fine! I just wanted to make the suggestion of taking some low dose aspirin before you go on your long plane trip, that will also help if anything is wrong, and it can't hurt
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Posted 6/27/09 10:13 PM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by sweetsurprise09
Posted by spa118
Posted by sweetsurprise09
i dont understand, why does a hemotologist need to the blood panel? I have thrombophilia and my OB did it in the office! Im sorry youre going through all this
A hematologist doesn't need to do it - the genetic counselor told me that, but after finally spoke to a dr. from the OB's office, he said that he would order the blood work from quest, and not to worry. HE said he thinks its fine for me to fly, and that we are taking the test to ease my nerves.
Has thrombophilia affected your quality of life at all?
Thanks for the
it has and hasnt. the only way it has DIRECTLY affected me is the lovenox shots everyday. im heterozygous for factor V laden, something with homocystine (i dont remeber exactly what ), have protein S defficiency, etc. my OB was just afraid of blood clots in my placenta so i was started on lovenox at about 16 weeks. no biggy at all, just one injection everyday. I also have a congenital heart defect so the OB thought the lovenox would also help prevent clots from that. two birds with one stone sort of thing.
im indirectly affected by it because I inherited these wacky genes from my father who did have DVT and died at 56 from an aortic dissection. the DVT is definitely directly related to the thrombophilia - the jury is out as to whether or not the dissection is related. im more worried that my will inherit these genes too.
all in all im lucky. my fathers passing from this has provided me with the info and education about what he and I both had/have, and now I'll be able to take better care of myself, and my too if need be. he's my guardian angel in that way
I'm sorry to hear about your dad I lost my dad too, and he was also very young, he was only 59. I also feel that his is my guardian angel. My dad died of a sudden heart attack - he was in perfect health, and was an avid runner and ate well. Crazy!
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Posted 6/28/09 1:57 AM |
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spa118
LIF Adult
Member since 3/09 2157 total posts
Name: Shari
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Re: Vent about not being able to talk to a Dr... and a ? about Thrombophilia - Long -- Update at bottom :)
Posted by McLovin
sorry to crash over here. We study clotting disorders in my lab. There are so many different disorders that can cause thrombosis, as alot of the previous posters said. Hopefully you will get all testing done and it will all come back fine! I just wanted to make the suggestion of taking some low dose aspirin before you go on your long plane trip, that will also help if anything is wrong, and it can't hurt
Thank you! I appreciate it it! And I Love your screen name :)
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Posted 6/28/09 1:58 AM |
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