Hello my Friends in this Forum! It's Deb! Sorry I havnt been around, but going thru too much too soon after being DX'd! Yesterday marked 1 year of the day I lost my leg from APS. At the time we didn't know I had APS! Still was treated grossly negligent in the loss of my leg, due to it being X'mas week! No good doc available! Wen I got to Hosp it was too lat! My savior Dr. M operated on me on NewYears night and then 3 more times till last surgery late on Jan 7,2015! He said I had BLOD clots spewing from my heart down all over my leg! I had no choice, at the time but to sign for the clot busting drug! He said he tried everything including the strongest chemical they have and put them on the clot to no avail! He was angry cuz he'd said in his years of practice he'd never seen anything like it! Then on June 9th happy as a lark was coming from a doc appt wen a young inexperienced 19yr old girl driving on wrong side of road hit me head on! I had a Vitrious tear, right near retina, broke my hand and such severe bruising on my tummy, Dr. M again said get to ur tummy Doc you cud have a blockage! I went a few weeks later after experiencing severe pain had a sonogram and doc said it was a hernia! That was on a Friday in July, I told him no INR's more told him it's a blockage to please give me something for the pain and he sain no wait till Monday! I couldn't wait, I got to Hosp and they tubed me immediately due to severe vomiting! They said I made it just in Tim that I had one more day to live cuz I had a sever blockage and ur intestines takes 3 days to die! Then since car accident & surgery I havnt been the same! Neuro Doc tuk all kind of tests and after being sooo weak and actually falling in his office, he tells me all tests came back negative, that it was a virus that went thru my body! Then maybe 5-6?weeks later m Hemotologist that I've seen for 13 yrs for another ever rarer blood disease cald PV/POLYCYTHEMIA VERA TOLD ME TO COME IN AND ME thinking he just wanted to see me for my 3mont check up since my car accident, go in and on October 4 he told me I had APS! Since then on December 19-20 , being on Lovenox coomadin and Plavix , then just coomadin , I landed in the Hosp with my right foot(my only foot) having severe spasms at home and turning blue for about 30 seconds, in excruciating pain I went to ER with a non therapeutic level INR of 2.1. I never thought my good leg would show the ER DOC my spasms and blue leg! Well to my surprise the minute I showed him the foot did its thing and he called peopl OTER docs in ER TO see this Phenomenon! He said he new Wat it was and pit me on Heparin immediately and Gave me DILAUDED for the pain! An extremely strong pain med! It was the small embolis traveling up my leg and I couldn't get in touch with my Hemotologist so I texted Dr. Caroline Cromwell, that was highly recommended from I think Ginny from W. Virginia! She told me to go bak on Lovenox shots! My Hemotologist said 2.1 was therapeutic & started all ove with the 10 mg of coomadin, 100 Mg of LOVENOX, & Plavix! A week later yesterday I found out my levels were 1.39! This morning he calls me and tells me to raise the coomadin level to 15 mg on Mondays and Friday's and instead of me coming every 2 weeks then every three weeks to chek INR, he wants to see me within a week! Dr, Cromwell said she doesn't agree with his way of treating my coomadin levels and I shall see her again this coming Wednesday! I've been in severe pain, extremely tired, almost lethargic! Will this get better as I become therapeutic on my INR LEVELS? Also I do have a very hard calf and Doc M. Says it's blood pooling! I think I will just let doc Cromwell take care of my APS AND doc Donnellys hopefully won't be insulted and will still c me for My PV/ polycythemia Vera??? I have an appt with a Rheumotologist from Dr. DORUK ERKAN! I got him from The Hughes Forum and He's at the HOSPITAL FOR SPECIAL SURGERY IN NYC & only doc in USA TO HEAD AN APS CLINIC! He has his own blog and will answer you questions! So I think because of you lovely people and My sister NANNY 23, who's been on the site for me wen I couldn't, found Dr. ERKAN for me on this forum , I thank you all WHOLEHEARTEDLY!!! I have and pray my luck will change after 62 years! The Fact that I live so close to NYC, only a half an hour train ride and a subway/ the underground as you in England call it, I may be on the right path! What do u all think and what do I tell this Rheumotologist, my appt is on Jan 27! I cudve gotten 18th, but was way too overwhelmed to go so soon!!!
Overwhelmed and Exhausted : Hello my... - Hughes Syndrome A...
Overwhelmed and Exhausted
Oh my goodness you poor thing what a rotten journey you've been on ...hopefully it will all settle down now .. This web site is amazing ...learn so much on here . Xx chin up
Thank you for ur reply! Replies mean that y'all care! Godspeed
O)MG Deb, same thing here. After that major bleed in Dec, that damn hematoma still in my abd, severe pain, sleeping all the time and have been on 150 mg Lovenox shots since being out of hospital, until going back in on 12/28 for what they say is MS exascerbation now..which I don't think it is, this week they started bridging me with coumadin, after 5 days of doing both, yesterday theey did my PT/INR and it was 1.0, so they increased my coumadin and will check it again on Monday. It's insane, I told the nurse yesterday at my docs that the pain from the hematoma is back..before she did the bloodwork and that all I do is sleep, I am so totally tired..I got a reply back from Dr, not to be too concerned will check on it on Monday. Damn, when that hematoma happened, I hd put it off for 28 hours..the drive from Florida to CT and you know the rest, the dr at ER said another 24 hours and it would have been too late. Please let me know when you see this DR in NYC and how he is, I just may take you up on it and go also. We can't keep living like this bing brushed off so to speak, by our own docs we are supposed to trust with our lives. Love ya my friend, and was worried about not hearing from you. God Bless!!
Sounds like you're on the right track. Good luck!
Good wishes to you, Debb. I'm so sorry you have been through such a dreadful time.
Thx so much for replies! This Wednesday I go to NYC to c APS SPECIALIST again! My right leg the good one, has had pain in calf for weeks! I don't no Wat to do with this pain! It just never goes away! I bought my hubby tickets to a B'way Show in NYC TODAY, I can hardly stand, but gota keep on Trukin as we say here! I'll go with my walker or cane better in NYC! Wat and WHY DO I HAVE JOINT PAIN FINGERS SWOLLEN ALL OVER BODY ACHES AT TIMES! They say I have BLOOD POOLING IN MY LEG? With all the Blood Thinners I'm on my INR is 1.39 not good! Do u think I'll feel better once my INR is Therapeutic! My local Hemotologist said no! What can be done! Any suggestions as to what to say to Dr. Cromwell on Wednesday! I'm in excruciating pain and pain meds just don't work and hate taking them anyway! Only will today wen I go to NYC! HAPPY AND HEALTHY NEW YEAR TO Y'ALL!!! GODSPEED
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