No Leg now: Hi it’s been a while since... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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No Leg now

Debbweb01
Debbweb01

Hi it’s been a while since I posted! I don’t like to complain... I’m having a rough time! The place where I go to have my legs made has made me 2 bad legs in last 6 months! I had pressure ulcers I did right thing and went to doctors twice in one week! Tried to make them understand this is no simple thing! It’s Debbie nothing ever simple for her! Well the next day or two after putting only antibiotic cream on it my stump started turning blue and very swollen I immediately went to hospital! My white blood count was so bad they thought I was septic! Had CAT scan, put in Morphine styler for next 3 days! I was very lucky the soft tissue around the bones was badly infected! I hadn’t gone to the bone yet! Thank The Good Lord! My leg so swollen I can’t get any leg I have in ! I have a swimming leg and a brand new custom made leg that I don’t think I’ll ever wear again! Only $11 thousand! I’m so tired my friends! If I can’t get myself a leg due to damaged bones because of bad care! Oh let me say Most of NY goes to this place! It’s great a very reputable place! I warned them in Rehab about me I told them almost 6 years ago wen odd things started happening to me that we wud end up hating each other! Unfortunately my prediction came true! I refuse to live without walking! I’m going to get crutches today because I can’t even eat cook go to bathroom without something! I pray y’all are well and Covid free! It’s been a terrible time for all of us! I’mCovid free was just tested! Yay for something! My hubby still hanging on by a thread in nursing home! We FaceTime, but just not like seeing him! He screamed for me to get there the other day! He has Alzheimer’s he don’t understand COVID! I haven’t seen him in 3 months! He never got the COVID BUT MAY DIE OF A BROKEN HEART IF THEY DONT LET ME COME SOON! Thx for listening to my ranting! It helps to write it down! Hi Kelly in Texas

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44 Replies
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Godspeed our friend 🙏🏼

Debbweb01
Debbweb01 in reply to Wittycjt

Thanks 🙏 Be safe my friend!

Dear Debweb01:

Remember? Texas is part of America. The land of the law suit. Most malpractice firms would be pleased to take your case and not charge you until they win it. It's worth having a second opinion on your care anyway. It may change the direction of your future care. Remember, always go to a teaching hospital. You will get the best medical care. Be brave and research the best. In Texas, A&M is a teaching hospital and world renowned. But I forget in what. Do a little fishing around. I think second opinion would give you peace. Please post how you are doing. Everybody needs to explode every once in a while. I bet every single one of us have done it. Smiles. CanaryDiamond10

Awe thank you so much Do you know a mutual friend on here named Kelly in Texas? I love ❤️ Texas been there twice! The second tim a charm! Great people great bulls and beautiful horses! I’m Taurus The Bull and I made sure I sat on a long horn Bull from Texas! Cute little (Real Big) Bugger we got along famously!!! Lol... Thx for the info! I just had my friend here from Veterans Affairs! He has helped me fill out paperwork to get the insurance I’m entitled to tgru my husbsnd! My poor hubby has Alzheimer’s and was a Korean War Veteran! So I’m going to get a new leg from the best in the world! The VA will make me a great leg he said and they have the newest innovations! So God works in funny ways! I never expected him to come on acSunday! But there’s my miracle! I also found out that if I needed rehab or eventually a place to go I’m also entitled to reside at the VA and so is my Mentally Challenged son! Wow now that’s great news! Took a big load off my shoulders!

Wittycjt
Wittycjt in reply to Debbweb01

Great to know for you. Glad things seem to be turning around🤗🤗

Debbweb01
Debbweb01 in reply to Wittycjt

Thx Witty where do ur live is it Across the pond! If things don’t go right in our next Presidential election I may leave The USA not kidding! Lol

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

Caution: love love love - but health unlocked rules will not allow for politics or religion views to be discussed on any of the health unlocked forums. Not ours, or any of them.

Probably for the best... you are welcome to discuss via private message 😉

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

Lol!

Wittycjt
Wittycjt in reply to Debbweb01

I have conversed with you awhile ago, back then i was in NJ, but i have moved to Delaware more recently late 2018 i think?- you know how that is...”thinking”, lol

Debbweb01
Debbweb01 in reply to Wittycjt

Yes nice to hear from you Hope ur well, safe, n happy Godspeed

KellyInTexas
KellyInTexasAdministrator in reply to CanaryDiamond10

Hi canary Diamond.

A and M = Agriculture and Military, but that hails from its inception many many years ago when the institution was first started , and Texas was still its infancy and a America was a nation needing to build and grow. It’s still a leader in animal science and agriculture sciences, and engineering.

Mist of our medical research is out of university of Texas Systems , ( Houston Medical chiefly) Baylor medicine.

Wow good to know Thx Be safe and keep well Godspeed

Thanks. It is good to know. I'm glad things worked out.

KellyInTexas
KellyInTexasAdministrator in reply to CanaryDiamond10

Are you in the USA?

I am. In the suburbs of Chicago. I used to post many years ago and then just read and finally. I stopped because other diagnoses raised their ugly heads. I replied to Kelly in Texas because at the time there was a Kelly in Texas I used to follow. I thought you were her. Please excuse my error It must have been confusing. CanaryDiamond10

KellyInTexas
KellyInTexasAdministrator in reply to CanaryDiamond10

No apology needed.

I might have private messaged with her. She was from Fredericksburg, Texas. Very near me. I gave her some very nice support, actually.

She and I used the same GP, if it’s the same lady I’m thinking of... she was maybe an airline stewardess? He issues were with pregnancy.

She unfortunately had someone get rather nasty with her. This happened way before my time- but I stumbled upon the old thread- and privately messaged her because I saw she was from Texas.

My older sister spent most of her life in Austen, Tx. She was the white german shepard rescue person. She also owned Austin Flags & Flagpoles. Her husband is a political commentator on Sunday am news. Naturally, living in Texas, he's a republican. I, am not. So we often do not speak since my sister died. I'm waiting for the whole *** country to implode with this nut, Trump, at the helm. They have enough grounds to force psychological tests. I don't know why they don't. He can still do so much damage. Americans are united in one thing. He is not fit to be in office. Pressure should be placed on him to resign. Between the heat wave, corona, elections, he is instigating racial riot Black Lives Matter. He's a bad guy, all the way around. Bad subject, but feel free to dump on me in return. Illinois has been a hot spot since the virus hit in April. I am high risk, as are you, I have "sheltered in place" since then. Our state mandated masks all the time. I need more than facetime with my little grandkidos. I hope things are working out with a new leg for you and that the infection has subsided. Keep me posted. Warm wishes, CanaryDiamond10

KellyInTexas
KellyInTexasAdministrator in reply to CanaryDiamond10

today.tamu.edu/2020/05/06/t...

Look what I found! ( regarding Texas A&M and medicine.)

I will never dump on anyone. Ever.

So I caution again, just like I did earlier in this same thread:

What makes America the nation it is a system of check and balances-and it’s so important to have those! It’s vital. Absolutely vital. But you know that, so I will not risk sounding condescending or “preachy” - just stating it so you know I myself value it very much.

And nope- not all Texans are Republicans! ( take heart!) 😊

However, Health unlocked does not per

Permit political or religion discussion. ( not our rule, but I do see the need and agree with it. We have members here from all around the world from varying faith cultures ).

This is meant only to be a forum who’s primary focus is the health topics at hand.

Otherwise there is way too much scrolling through miscellaneous threads to get to information needed or asked for.

It’s been said that , “ such discussions off piste are better suited via Facebook or personal message.”

Mainly I wanted to say, on closing , many of my family members are in Austin. My sister And her husband had several white German shepherds. Always rescues. From 1974 on until now really. I wonder if their paths ever crossed?

Somehow you and I will find a solution. We always do. Love ❤️ your sister Lynn

KellyInTexas
KellyInTexasAdministrator in reply to Nanny23

❤️God bless Lynn

HollyHeski
HollyHeskiAdministrator

God speed to you both, you lovely sisters, xx

Debbweb01
Debbweb01 in reply to HollyHeski

Thanks Holly! How u doing Guess I found my solution today with The Veterans Affairs! Godspeed Hope you’ve been well and Covid Safe

HollyHeski
HollyHeskiAdministrator in reply to Debbweb01

I'm doing ok at the moment, normal flares!! Thank you for asking.

Just Mary, Ros, Kelly and I covering as Admins now, if I speak to Lynn or Dave I will pass on your regards.

Hope the veterans help xx

MaryF
MaryFAdministrator in reply to HollyHeski

Agreed, lovely sisters, supportive together xx

KellyInTexas
KellyInTexasAdministrator

My heart is breaking for you Deb...

I’m just heart sick.

Heart sick heart sick heart sick.

Do you think you are having trouble with that leg because you are not getting quite the right blood flow to the skin and tissue to the stump? What are they telling you they think the issue is?

You were so looking forward to this new leg. I’m so disappointed in this outcome for you.

What is the next step? Let skin heal and make adjustments to the prosthetic leg?

I know you are hurting for your husband... how are you communicating with him right now? Face time with an iPad?

How’s the stepson? How is he? Where is he?

I’m so utterly heart sick for you.

Hey- how are your lungs doing?

I’m talking thru FaceTime no it was 2 past legs that never fit correctly and they let me suffer! Instead of making the custom made leg they made another leg for me! It never worked! Went thru 6 months of hell! Now I have infection soft tissue by the tibia and what’s left of my shin bone! It’s very swollen and have to keep it up! I can’t fit my swimming leg or my new leg! I’m going to be getting CHAMVA HEALTH INSURANCE! My friend from VA came over today with the paperwork to fill out! I was supposed to gave this back in early March but then the Covid screwed everything up! So the VA has State of The Art Legs! Told him I don’t want anything fancy! He says I can have new kinda leg with stimulator like u feel it! It’s funny u say about circulation cuz my stump Ice cold and bluish I keep massaging it but it’s got pressure ulcers on it and extremely painful! Don’t think the swelling will ever go away! At least I got relief today My hubby was a veteran during Korean War and is disabled cuz of what happened while in the service! So if I become an invalid I have a place to go so is Keith covered! He’s eligible for same like me! I’m a fighter just not this morning while hopping and rolling around! Had my pity party for the next year I’ll just keep on Truckin now! Thx sorry about anything political just looking to c what country I may go to! Hopefully not Love my country Thx for answering me How was ur daughters wedding? Hopefully all went great?

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

Don’t you worry! No problem at all.

All things ebb and flow, you will find balance and peace here in this great nation if you simply stay the course.

Speaking of ebbing and flowing... that blood flow to leg...

Infection can make our blood thicker. What anticoagulant are you on? Remind me please...

You are on lovenox... twice daily plus plavix?

Keith is your son. He is how old now? Is he living with you on Long Island?

Our daughters wedding got cancelled... was supposed to be June 13th. Her fiancé is from Germany- 40 people due to fly over. Plus our Texas side up to New York- plus friends from here, there, and everywhere we’ve all collected.

No flights.

Wedding was due to be on Princeton campus- but the uni is closed. The cathedral, plus Prospect House.

So it’s now set for sometime next summer.

The issue is his student visa will run out. He’s a PhD student. They are going to have a civil ceremony so he can secure his status.

Then we will have a religious and family service and celebration. They don’t want anyone to know they are getting married sooner-

Awe glad they getting married sooner! Sounds like it we’ll be awesome! Yes Lovenox 1X and Plavix It’s extremely painful cuz of pressure ulcers! I’m so darn angry at the leg place but must move on and heal

Debbweb01
Debbweb01 in reply to Debbweb01

Keith 63 Has Wms Syndrome no data after age 60! Yay I keep him going he’s my heart and lives with me Helps me and we keep each other company He’s very funny

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

Williams syndrome! Oh sweet ! I saw a child interviewed recently with that🥰

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

Debbie,

I have two very important things to share with you:

1. It’s important to have lovenox every 12 hours. ( 1 mg per kg )

I found this out the hard way- by continuing to clot by only having it at 1.5 mg per kg every 24 hours.

True APS specialty hematologists know that APS patients need the split dose.

Also, you might find clopidogrel could be added.

Prof. Hannah Cohen was my prof who dosed me this way. ( high intensity.)

2. PRof. Beverly Hunt sometimes, in some cases, recommended fondaparinux for APS patients who are treatment resistant. ( continue to clot through standard treatments.)

I know this because my rheumatologist told me this. It’s especially helpful for neuro manifestations.

I haven’t tried it yet. ( I feel better on warfarin than lovenox - but I felt sooooo much better when lovenox was dosed every 12 hours than every 24)

You don’t get a trough that way.

MaryF
MaryFAdministrator in reply to KellyInTexas

Very sensible advice indeed, having had this experience yourself. MaryF

Having to put up with all this must be the most painful and frustrating thing for you. My neighbour has just had his new leg a few months ago and rather than having all the problems with rubbing and pain he had Osseointegration-where they inset a metal stump so the weight is transferred through the long bones. i don't know whether you would be offered this but it was started here by a surgeon who was a refugee. Brilliant man and teaches the technique all over the world. He now also does our veterans and the success stories are amazing. One patient does a 5 mile walk each day-pain free.

His website almuderis.com.au/osseointeg... if you would like to look into this further.

All the best from Oz.

Debbweb01
Debbweb01 in reply to Ozchick

Wow sound amazing but not sure having APS and 4 more autoimmune diseases that they’ed take a chance, but I’ll definitely look into it thank you so much! I really appreciate the input Godspeed

Hi Debb!

I am sorry you have such a difficult time. I hope you can get to your hubby. Alzheimer is the illness of the relatives they say here. I hope for you getting the correct care.

I am getting old now (76) about the same age as some person fit to rule the country perhaps.

I am a bit worried about my PAH and leaking heart-valves. But I feel fine as long as I take my Warfarin and keep the right 4.0. I am lucky to be able to take daily walks. Hope the Corona will go away soon. Difficult when you can not see people you usually see.

You are a fighter Debb. You will never give up. You have a heart of gold also.

Godspeed!

Kerstin

Debbweb01
Debbweb01 in reply to Lure2

Thanks 🙏 Kerstin You too have always been a fighter! I’m trying! It’s a bit difficult now because none of my legs fit me now due to swelling! Hopefully soon the swelling will go down and I can be Debbie again soon! I hope and pray u stay well and safe! Yes want The Carona Gone too! Godspeed

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

“Don’t let the door hit you in the a##, Rona!”

MaryF
MaryFAdministrator

You poor thing, I am so sorry that life is currently so difficult for you, I hope you still see your sister for company? Feel free to post us updates and keep in touch, a big hug coming across the pond to you. MaryF xx

Debbweb01
Debbweb01 in reply to MaryF

Thanks Mary I hope you r well! I miss Dave and Lynn. How r they doing? Yes I c my sister a lot lately! Be safe, Happy and Healthy! Godspeed

KellyInTexas
KellyInTexasAdministrator in reply to Debbweb01

They are definitely missed!

A male perspective is sorely missed, and Lynn’s keen research skills are definitely missed. Fortunately for us Mary and Tina provide research links as well- and I do my best as eyesight permits.

They are on a well deserved break looking after themselves, work and family commitments.

Debbie, I just want you to know that you are in my prayers. God bless you and your family.

Thank You Rosemary! It means a lot to hear from you! Hope ur well and safe too! Godspeed

I am so sorry to read this, I pray things will get better. Feel free to message me to arrange a chat if you need to vent.

Debbweb01
Debbweb01 in reply to GinaD

Thx Gina I’d love to chat with you! Hope ur well and safe! Godspeed

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