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What Is Your Longest Hospital Stay Due to MG Issues?
How long has MG landed you in the hospital?
What do you remember about this time? What advice would you give to someone to prepare for the possibility of what you went through?
To help out loved ones of those with MG: What type of support did you receive or you wished you had received?
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8 Replies
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My initial diagnosis resulted in 4 separate stays each lasting 7-8 days. The hospital insisted on treating me with plasmapheresis the first three times along with Mestinon. Finally they realized the Plasmapheresis was nothing more than a bandaid that lasted at most two weeks. Finally i was put on IVIG and then transitioned to Soliris and now Ultomiris. I have not been in the hospital for three years.
Some of the things I learned. Before you go get all your electronic devices and chargers together. Because my speech was heavily compromised I took a clipboard with ample paper for communication.
The most important thing I learned was to stand up for yourself. Most of the nursing staff were good people but I had a couple of incidents where I had to get management involved because I was not receiving the quality of care that I should.
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5 days having plasmapheresis. It only lasted about 2-3 weeks. I am now on Vyvgart and it is working wonders.
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I only have a quick moment to reply .. and will do longer later….
It took me eight long suffering and weakening months from 7-25-2019 to 3-24-2020 to be diagnosed with ACUTE OCULAR & GENERALIZED MYASTHENIA GRAVIS. Not a single doctor could diagnose a rare disease with 9 or 10 symptoms … and how all my symptoms could be ONE DISEASE. I was finally diagnosed by an older experienced nurse at the second of five hospitals, who recognized my symptoms from other MG patients … that she had helped in her career. She talked the hospital doctors into giving me a NEURO-CONSULT and Thymus/Antibodies tests … all the ANTI ones were through the ROOF.
Due being an unknown disease and all the medical miscues along the way. I was in five hospitals for five months .. due to MG. The first three hospitals from 2-4-2020 to 6-11-2020 and hospitals #4 and #5 from 11-5 to 11-27-2020. I have been in remission, just over two years, since my BLACK FRIDAY release from the last hospital on November 27th.
After 6 months of my Cigna doctors and their referrals, being unable to diagnose MG … I walked into a Banner Urgent Care Center (2-4-2020) attached to a hospital to find a talented and informed doctor … and lost BIG TIME … I did not leave my hospital beds till June 6th at the third hospital.
I did not know I had MG … so IF you have a MEDIC ALERT BRACELET .. wear it RELIGIOUSLY 24/7, and ALWAYS have your messenger bag filled with medical tests, reports, medicine lists, contact lists, copies of HEALTH POWERS PAPERS, a cell phone and charger, a 7″ or 10″ notebook computer, its charger/extension cord, and a list of accounts/codes/contacts.
As hospitals and therapy rooms are SUPER COLD, … like 60 to 66 degrees, bring a WARM BLANKET, a extra LONG socks, and a neck scarf for cold nites … as a “hospital gown” is very thin, with open sleeves, open neck, open back, and totally open legs … so you will not be able to have ANY PANTS to wear .. . so your legs will get freezing very quickly, so you can’t sleep.
Because the doctors did not know that I had MYASTHENIA GRAVIS, they did not know all the many drugs DANGEROUS to me … so as a result, I had a CODE RED called on me … within 30 hours of arrival … ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE OF ANESTHESIA.
As a result of that mistake, for 4 months of my hospitalization, I had 100% hearing and speech loss … so also have in your messenger bag, three pads of paper, or a dry erase board, pens, and magic dry erase markers … so you can communicate with ANYONE, and remind them of your SITUATION and SYMPTOMS. Your life depends on it. DO NOT LET THEM TAKE FROM YOU EVER your messenger bag, that you arrived with. It has your communications, your contacts, your MEDS list, your MEDICAL HISTORY/DOCTORS, and your means to express yourself in writing … if they disable you.
BE SAVE AND SURVIVE …. from a fellow surviving MG patient … God speed !
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Thanks for the sound advice on having a “to go bag”. I will get one together and check it periodically for updating. I have been hospitalized three times since being diagnosed about 11 years ago.
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First time, crisis in ‘11 was about 3 weeks. Was intubated and started on plasmapheresis. Had central line for about 2 years and had the procedure 31 times, followed by massive doses of prednisone and 2 more years of retuximab infusions. Have landed in hospital too many times and the disruption of daily activities hd been catastrophic.
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A to go bag is essential. Try to duplicate in small measure everything you need at home. Take it with you if an ambulance transports you to hospital and in your car so you are always prepared. Hopefully you will not need to use it, but it saves the day when you do.
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1 month. Love that tube feeding look!
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3 stays within 12 months…1st stay was my 1st crisis…intubate for 3 days and then recovery for 2 months… originally on IvIG, Cellcept, prednisone and Mestinone…was doing great for almost 18 months then boom…2 nd stay went to wrong hospital that advertised neurological staff but nope…was there 3 days y and given high doses of prednisone… made things worse… went home for a week then back to a very good hospital… immediately placed on plasmapheresis for 10 days of treatments and responded very well…put on ultomiris… been recovering for 6 months… almost back to normal schedule with work and life. 2nd stay…I had been away from my home and regular neurological staff so if you’re traveling, make preparations in advance!…
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