Hello SCLS Community,

I traveled to Maine on October 4th and returned on the 10th to Kansas City. We traveled with two other couples who contracted Covid upon our return. I was fine from the 10th to the 14th. On the 14th I taught a group fitness class in the morning and felt fine. By 11:00 that morning I began to feel light headed. This has happened to me many times and usually goes away. There was no leaking coupled with the light headedness, so I was not too concerned. I began to worsen throughout the day, but still showed no signs of leaking. I decided to give myself my subQ Ivigg treatment which was due the following day. This didn't help and by the afternoon I couldn't stand without passing out. My husband called the ambulance and I was rushed to the hospital. My blood pressure was non exsistent and I tested positive for COVID. It is important to note that I have had Covid 3x and although it caused a leak, the leaks were taken care of by an IVIgg infusion. This time was very different. I had to be given small amounts of fluid becuase my organs were shutting down. The doctors had me on four vaso pressers. I was intubated for 3 days. The swelling began while I was in the hospital, but luckily I did not have to have faciotomes. I ended up on dialysis as my kidneys suffered acute failure. My kidneys have recovered, but the doctors say I am now susceptible to acute kidney failure. The doctors were in communication with Dr. Druey the whole time and working together they saved my life once again. I remained in the CICU for four more days and then moved to a regular room for another five days. I am now home and have been recuperating. I am concerened with returning back to work, I work in a gym as a personal trainer and fitness instructor, with Covid, RSV, and Flu season upon us. I am not a germ-a-phobe, but feel like I need to be as I don't think my body can survive another acute attack. 

I hope everyone is doing well and has a wonderful Thanksgiving. I do not get messages from Rareshare. I have tried to change my email address numerous times to no avail. I will check the rareshare site periodically. 

Cristina Burns

Hello, I'm sorry for what happened. I would like to know what the amount and form of administration of gamma was currently. I see that you mention Subcutaneous? Something is definitely changing and I can't think of anything that doesn't have to do with the COVID outbreak.

Ariel

Hello Ariel,

I take 10g of Hizentra SubQ 2x a week, so 8x a month. The 10g takes around one hour and 55 minutes to infuse. When I go to the hospital for care they give me 55g of gammaguard or privigen intraveinously. If needed they will give me two doses. I hope this answers your question. 

Cristina

Hello Christina,

I hope you are doing well now and recover very well. Just for information, did you receive this year a new (updated) Covid vaccination?

Wish you the best,

Hans

Hi Christina,

I live in Barcelona, Spain, my doctors think that covid vaccines may be as harmful as a covid infection for SCLS patients. I am not vaccinated and only contracted covid once with mild symptoms and a mild capillary leak episode that resolved in 3 days. 
How are you doing now? Have you resumed returning to work?
Best,
Valeria