I have a date for my arm surgery afte... - Hughes Syndrome A...

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I have a date for my arm surgery after 2 and a half years waiting

mariamoo1 profile image
5 Replies

Hi, to all of you that have been following my long journey. I ended up going back to my GP, in regards to the heavy nose bleeds, turned out I have a folic acid definitely, so started on the folic acid tablets, also my red blood cells are too large, and too much iron? My excellent GP, Then picked up just how much pain I am suffering, with this on going long awaited arm surgery. And he contacted the surgeon.

Two days ago I received a phone call to go the next day from the hospital, to go the very next morning for a pre- op. Did all the normal checks, height, weight, ECG, bloods, swabs, X-Rays . Medication check. Then I got I phone call to have a an aesthetic pre op assessment , which is today. And also to see a pharmacist about a bridging plan. As I am on apixaban. They have hinted on putting me back on the stomach injections. I will find out today. Sorry it’s short notice, but if any one can offer advise please. After 2.5 years of waiting for this operation to finally fix my crushed shoulder and humerus, they will have to cut the bone apart, screw and fix in metal plates. ( as the NHS WILL NOT FUND THE TOTAL SHOULDER REPLACEMENT I ACTUALLY NEED, AS I AM ONLY 51)

If any off you can offer your advice on surgery with APS, bridging plans and more

Please help x

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mariamoo1
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KellyInTexas profile image
KellyInTexasAdministrator

This is fantastic news!

Firstly,

A pharmacist shouldn’t be the one to advise you on a bridging plan, unless he / she is simply telling you what the Hematologist has instructed.

There are very precise bridging protocols ( usually blood is kept slightly thicker for us, and we go back on anticoagulation a bit sooner than other hyper coaguable patients ) put in place for APS patients that are patient specific, and surgery specific.

Both St. Thomas and University College London Hospital have specific Bridging Protocols at their Hospitals. Physicians with APS patients are instructed to specifically call for instructions to the hemostasis units at either hospital for specialized instructions.

( also super good news on finding out the source of the nose bleeds! I tend to be a little low on folic acid and am prescribed it. If you can, make sure it’s methylated, as it is absorbed by the body much better this way, according to my Hematologist. )

I never knew that being low in folic acid could cause nose bleeds- thank you for teaching me this!

The very best to you! Keep us posted. And it’s about time you got the help you do desperately need!

jetjetjet profile image
jetjetjet

Hi that is horrible - But good now you have a light in the tunnel . Do you know what they are going to use for your bridging such as Enoxaparin {lovnox } I ask because i have used this and my regular Anticoagulant is Warfarin Sulfate { Coumadin as many call it } .That i can give you the protocol as i have done many many times. i have put it out yo others before . get back to me if you wish .C & J in USA

MaryF profile image
MaryFAdministrator

HI, it is great to see that finally you are getting the help you need, it is awful how you have had to wait for this help, disgraceful in fact, but better late than never, as KellyInTexas correctly mentions, each hospital has it's own bridging protocol and this will be implemented by the Haematology team in conjunction with the other medical staff. Regarding your low Folic Acid do really make sure they look at your B12! nhs.uk/conditions/vitamin-b...

I look forward to hearing about your mended arm and your recovering! MaryF

Raw57 profile image
Raw57

I did not have such serious issues with my shoulder but I have had shoulder surgery. I hope your surgeon orders a nerve block. That will make your arm and hand completely numb for a few days. Despite the weirdness of being numb it gives you time to build up pain medication in your system. I believe you will have bone and incision pain but if you get the block the worse of it will be while you are still numb.

I hope the surgeon and staff are careful with your neck so to not cause any other problems. Some surgeons are just so rough with patients while they are out and cannot say ouch!

I’m sure you will have wake up in a sling. You might be told to not remove it for a number of days. If it’s your dominant side make sure you either have lots of help if have prepared food that can be eaten with one hand. I did a lot of smoothies, fresh fruit and veggies that had been cut up. Make sure to have pants that are elastic waste and easy to pull up or down. I think larger button up shirts or larger t shirts worked ok. Bras that you can either step in or are front attached. I’m blank on what you call it. Ridiculous but true for the moment.

Please be very patient with yourself, take it easy, sleep in a recliner or propped up. Keep a pillow under your arm. Do take short walks and build up to longer walks. You can find slings to use in the shower. It’s very helpful because when you accidentally reach down or forward you will be cussing up a storm. I used a long handle shower brush to wash places I could not reach with my left hand. Take pain medication as prescribed. Do not skip a dose the first few weeks. Oh most importantly ICE 20 minutes every hour the first week for sure. Ice is nice!!!

Please pm me anytime! You will do well. I’m so glad you will get this fixed soon! It took me about 9 months to fully recover from my surgery. I think my surgeon thought it would take 18 months. So even though the first 8 weeks were awful the rest of the time I progressed very well. I’m in my 60’s. I wish you the best!!!

Raw57 profile image
Raw57

Bra clasp! It came to me. Maybe it’s called something else in England?

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