Totally Disgusted: I cannot take much... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Totally Disgusted


I cannot take much more. 1st of all, I am sick of Dr's, Specialists, Hospitalizations, tests, blood work, medications, in home nursing and physical therapists. I am so tired of bad news all the time. I just want to be "NORMALLY HALTHY", for just 1 week, pain free and happy, not wrecked with pain and depression because I cannot live a normal life. I have been sick since 2000, so many DX's, hospitalizations, tests and medications. Since Dec 1st, 2015, it has been non stop. Three times hospitalized, 2 times very close to death and once for my MS going into a bad flare. The past 2 weks nd yet still 2 more weks of appointments have been hell. CT SCANS, Pul Function Tests, arterial blood gasses, PT/INR's every 3-5 days, sleep study overnight. I postponed a few such as GI and a few others. Saw my Primary care DR nd pulmonologist and eye dr. One on Thursday and 2 yesterday. My Primary said my PT/INR is 2.1 but doesn't want to increase the coumadin anymore because after the bleed back in December he is too worried. My pulmonolgist said Cat scan looked good, the blood clot I had in my left lung had disolved. I asked when did I have this clot, because it was the 1st I had heard of it. His answer was simple, I must have developed the clot at the end of Nov, when I got very sick after being exposed to the black mold. No, the mold didn't cause it but added enough illness for me to be so sick with coughing and needing oxygen, that I went to the ER. However that hospital did not catch the clot, blamed my acute illness on COPD, being I am or was a smoker. I had such coughing fits while I was there and wasn't getting better just worse that I signed myslf out AMA. My husband drove me for 28 hours straight back to Connecticut to get the proper help I needed. By this time, I developed a bleed as my INR was way too high. It was an abdominal/chest bleed in which I developed a very thick 12 cm x 8.5 cm hematoma. I assume thats when they also found that I had this clot in my lung. I was out of it for a few days. I don't remember too much, they may have told me about the clot, I don't remember. Yesterday, I went to my eye Dr as my vision has been progressively getting worse and I felt it was time for new and stronger lenses. My eyesight is so bad that I am not allowed to drive anymore, that doesn't really bother me as my hubby does all the driving anyways, but the reason does. I am 58 years old and my auto-immun illnesses havee played its toll on my eyes. No new prescription as I ned to see the surgeon for extreme catact removal. With the surgery I should regain most of the sight in my right eye. The left eye however, is worse. He said the reason for the surgery on the left is 2 fold, to remove the cataract because its extreme and to be able to see whats going on in the back of it as he saw something he did not like. Even with the removal of it from my left eye, he doesn't believe I will get my vision back in that eye. I am going to see the hematologist on the 9th. I have had too many blood clots not too be in a theraputic range. My primary and Pulmonolgist both concur they are too worried of me developing another bleed. So what??????? Chances of a clot killing me is less then the chance of bleeding out????? I don't understand. All I know is this, I am sorry again for a very lenghty post. I have no one at home I can vent to. They don't understand or are just as sick as I am with dealing with all this, so the support is not here. I'm so tird, at times I just want to give up, and other times I want to fight, get better and enjoy some life again. By the way, I fired the nurses and physical therapists that was coming in, as it was just way too much with all the appointments, I had no time to breathe. Thentheir social worker called me, and asked if I would be willing to go into a sort term rehab nursing home until I got back on my feet, because they were worried about me and after all she said, your insurance will cover it. Rant over, sorry agaain. Thanks for being hre so we have someone for support.

10 Replies

HI, you are having a tough time, I enclose this, as I always do for people over in the USA. It is totally vital that your local doctors are guided by somebody with full professional knowledge of your conditions, and also they understand the issue of bridging for any form of surgery. Please feel better soon, and I know I always say this, please make sure they check your vitamin D, B12 and iron as if any of those are low, or your thyroid function not right, it will make you feel worse, and the rate at which you heal, slower. MaryF

I totally agree with what MaryF has said to you!!

Prof Hughes says that "we do not bleed from this disease, but clot". Not always ofcourse but in general with APS that is the case. If you do not have a Specialist who understands what to look for re symptoms and an INR at the right level, it will be difficult. There is rather uncommon with both MS and APS but if may be possible ofcourse.

This illness need anticoagulation!!!!

Good Luck

Hi again,

I read a little from earlier posts. (It is difficult to remember everyone on here as I also have bad memory sometimes) I saw then that you had got a new Specialist before Christmas who should be competent and understand APS. Did he put you from Lovenox shots over to Warfarin again and said that an INR of 1.2 should be enough? I did not remember that you had so much bleeding-issues. Must be difficult to handle for you. A moment 22-issue it seams to be.

I understand you are tired and fed up of everything! Hope you will be better soon. Glad that you have got a wonderful husband by your side. Give him my regards also.

Kerstin in Stockholm

Hi DAR looks like we r both fed up! Me too! Now I have Rheumatoid Arthritus! Kerstin is CORRECT IF THEY FONT WANT TO KEEP UR COOMADIN LEVELS AT PROPER LEVEL, YOU NEED AS I AM TO BE COVERED BY LOVENOX SHOTS! Kerstin is right we don't have bleeding disorder! If I remember correctly you bled because that hospital u were in made a mistake with ur coomadin levels!!! Nothing u did, it was their MISTAKE! Explain that to ur specialists! You won't bleed again if you r kept at proper levels! You were at some crazy number like 12 if I recall and they let u go without telling you! They told u the wrong numbers! The cataract surgeries helped me immensely! I do have macular degeneration in left eye and that's the eye I go half blind in at times! It's also eye that I had angio of and they saw this spot but didn't know what it wa s and called it insignificant! Everything is insignificant to them wen they don't know! So please remind your current docs that it was the hospitals mistake that u bled in the first place!!! It's on them not you!!! I think we are in more danger of receiving a blood clot than a bleed! Ask to b covered on LOVENOX SHITS FOR NOW! I know u hater them, but if we put them in fatty area w/o pulling skin back we won't bruise as much and jut pit it in slowly! I never bruise or bleed cuz I'm never anti coagulated enuf! My Hemo think 2.0 is ok wen I was throwing embolis at 2.1! Which I tend to address on Tuesday! After I c him I'm done with other docs! Don't want genetic testing cuz I'm complicated or to know any other disease I have! You will have one week of fun wen I get up there to you and we just live!!! I can't wait to do that! All we want to be again is our fun loving silly selves again! Some of these docs mean well, but they have no idea what it's like to walk in our shoes!!! I see u wrote to Nanny 23 as its my sister! She came up Positive for APS test as I did! Just follow thru with ur anticoagulants and be pushy! Don't be afraid to come back with an answer or a question! The docs hate it wen we know more than them, but it's our lives, not theirs! How was breakfast with ur Hubby the other day! You were so very happy you were going out for breakfast and it's last I heard from you! I shud have known cuz we were Guna catch up later on!!! Love you and I'm here for you! I'm glad you fired those people! I've thought of goin bak to rehab cuz u get help u need! I have absolutely no one her to help me! I have support from my sister and s friend that cooks for me and if need be does my laundry as I have one leg and that one in agony all the time! They have NO REASON FOR IT, but I think it's coming from my SPINE! Since that car accident I've not been Debbie and I miss myself as I know you do too! We just have to keep getting up in the morning and hopefully see the sun, instead of the rain! Being positive helps& I know it's tuf to be wen we r going they more bad news everytime we see a doctor!!! Enuf!!! But I know Not so fab and many others on this site have had to fight for every little thing they have! At least here in America we don't wait for appointments or referrals we just can go! They all have to wait sometime 3 monts b4 they can be seen or they have to nag them! So keep ur chin up and get PIST off instead of sad! We tent to fight better when we get PIST off!!! Lol... Love you and I will IM you as soon as I charge my stupid iPhone!!! GODSPEED!!!

Omg glad u liked my reply! I'm so concerned since my sister called me! Please keep me updated as I'm very concerned! We need to be well by the springtime for our Day in the PURE SUNLIGHT AND EATING BAKED GOODS MAYBE??? Lol... Visiting quaint countr stores and looking at little antique shops and of course have a great meal and Maybe some white wine!!! What's u think of that!!! It in the works!!!

you are so funny Deb..Love ya my friend. When on my phone, I dont know why but all I can do is click like. On the computer I can reply. After w had that little text on phone, i went home and laid down. So sorry, I left the phone in my purse and didnt here the beep to tell me I had a message. IM me later if you want oe call whn you have time. Love ya and ty for being there.

well know you arent alone. welcome to catastropic aps. we have all been poked prodded and tested more than a gmo bovine. sorry its gotten so bad for you.

Hi, just wanted to offer my support from a distance. We are all silently next to you, with similar experiences, and can identify with your ordeal.

I hope things get much better quickly.


If they are not going to keep your INR in a therapeutic range, they can treat you with chemo drugs like "rituximab" that will knock out your immune system and stop your body from producing the APS antibodies. I don't know if this is an option for you. I would be really scared to not have my INR at a higher level. But they do have to balance out the risk of clotting verses bleeding. I was bleeding from my gums the other day for about 15 minutes. I was literally spitting blood out of my mouth like someone had punched me. I was all freaked out and then it just stopped all by itself. I know we don't usually bleed with this disease, but bleeding I is a serious risk, and the chances of bleeding increase every year we're on Warfarin. I d agree that the Lovenox would be better because it is not long acting like the Warfarin is. They can discontinue it faster and stop the bleeding better if you are on the Lovenox.

Here is some information about alternative drugs to help prevent blood clots in patients with APS:

Recently, statins have been a new approach in drug therapy in APS due to their antithrombotic, anti-inflammatory and pleiotropic effects on vascular endothelium [52]. In fact, it has been shown that some statins can block the aPL induced endothelial cell activation which is thought to be a mechanism of thrombus formation in APS [53].

Hydroxychloroquine is widely used in lupus patients and is thought to have a promising role in APS patients. Hydroxychloroquine is known to have weak anticoagulant properties and its use in SLE patients with APS has been associated with a decreased risk of thrombosis [53]. Moreover, it has immunomodulatory effects that might prove beneficial in APS [53].

Some authors have anecdotally reported the use of rituximab in selected APS patients when standard treatment had failed, some with favorable outcome [54,55].

Unfortunately, much has yet to be done, since none of these drugs have yet been studied in clinical trials with aPL positive patients and effective alternative drugs still need to be developed for the management of APS with thrombosis.

I know you're going through so much right now. I know how overwhelming it can be. I am sending up prayers for healing and strength for you. I hope you are feeling better when you read this post.


I just came on quickly to tell everyone thank you for all your replies and for always being here for everyone. I am struggling badly with depression at the loss of losing more independence. This is the part of this ilness I cannot seem to get by. I have been doing mostly just sleeping and shutting myself from the world. Here, we can depend on our APS family for words of encouragement, whereas in our home lives there isn't much of that. I posted on my Facebook page how much I am hurting and devastated with all that has been lost due to constantly going through some flare or another. My 2 children and their spouses all said they are right by me all the time. I have many friends on facebook, many are cousins or friends I grew up with, or friends throughout the years. I know many have seen it, as they have spoken to one another but none of them say anything to me. They post pics of themselves and their families enjoying life, being active etc, I and my children at one time was able to join in with them, but since 2000 when my life started to fall apart there weren't anymore invites. I know it sounds like I am jealous and maybe I am. But i'm human and have deep feelings. Please keep me in your thoughts and prayers. I will come on when I feel like I can handle the depression better. Thank you again, Darlene

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