How have blood donations from others benefited you?

[Jonathan A]

In the past, before I started getting Myasthenia Gravis symptoms on July 24, 2019 ( I was finally diagnosed by a hospital nurse on March 20, 2020 after an 8 month search for an experienced doctor), I had never taken any pills, or been in a hospital,  in my life EVER.

So now I take over 5500 MGs of meds per day, including immuno-suppressant drugs.  So as you said, I am now FORBIDDEN, from donating plasma, blood, or ever sperm  … as it could especially affect babies and pregnant ladies.

In the past, I have never donated any blood, as every time, my PCP wanted blood for testing, the nurse ALWAYS had trouble finding a vein.   Now that I have MG, and spent five months in five hospitals in 2020, I am finding the nurses are being better trained with drawing blood, doin IVIG, and putting blood draw “ports” in each arm.   Those “ports” only last so long, that I even had a nurse at one hospital, cut off my hospital ID bracelet with a scissors, to find a fresh section of arm wrist skin, to do a new “port” placement.  I was not fed any hospital food for the first three months, so I had constant IV’s and later a PEG TUBE keeping me stable.

So YES,  I believe I did get blood or plasma donations.  Once that third floor nurse recognized my MG symptoms, after 8 months of doctors couldn’t, she explained my disease and got me an experienced doctor who did a NEURO-CONSULT, and ordered 6 antibodies tests and a thymus test. I had HORRID scores (so they repeated BINDING twice and BONDING once),  so the nurse saw me through 5 days of 5 hours of IVIG treatments from March 26-30th.  So I believe that is some blood or plasma infusion  … or transfer out and remix ?? with fresh.  I am now in REMISSION since I left the fifth hospital on November 27, 2020.

I have not needed any further IVIGs .. so far.   The first hospital could not diagnose MG, so I was kept sedated with MORPHINE and FENTANYL, from Feb 5 to my Feb 27th transfer to a second hospital in another city, where I was fianlly diagnosed on March 24, 2020  … so I have no idea, what I was given, when I was sedated, undiagnosed, and in wrist restraints at the first place.

So having been through PURE HELL, I really am thankful for blood donors, but have to say NO, when they ask at schools and churches, during their blood drives.  MY BODIES FLUIDS ARE NOW POISONED  by 5500 MGs a day of IMMUNO-SUPPRESSANTS, BETA BLOCKERS,  STATINS, STEROIDS like PREDNISONE, five BLOOD THINNERS, a MALARIA drug?, and the drugs thatare given to LUNG/KIDNEY/HEART transplant patients.

ALL STRIPES and PICNIC HEALTH RARE RESEARCH FOUNDATION REGISTRIES have been terrific in recovering over 1600 medical documents, tests, and consults … so I now know that names of over 90 drugs, that those five hospitals dumped into me, including 4 antibiotics to help cure the three different PNEUMONIAS, that I contracted in the ICU of the first hospital.

So … if you have clean blood or plasma, try to donate, when your church or school comes asking.

[Joe]

I just started octagam infusions.has anyone had this? I am mg negative

[Bambilin]

I took IVIG therapy for a year while mycophenolate was taking effect. It may have even saved my life since when I was first diagnosed and very weak, I was able to receive two infusions prior to major surgery that helped revive my strength some.