For the last 4 months I have been struggling with a number of decisions that all seem to depend on one another for answers. One of the major decisions I have been facing I whether or not to do infusions of gamma globulins (antibodies) to give me the part of my immune system that was wiped out by previous chemotherapy. Without the ability to make antibodies it leaves me extremely vulnerable to infections of all kinds. Not a great place to be in a pandemic.
There is a possible solution to my condition. I can receive infusions of antibodies from other people. When people donate blood – pharmaceutical companies take the blood plasma and extract different products – platelets, clotting factors, enzymes and antibodies, to name a few of the components. These products go through an intensive cleaning and quality control process. After months of processing – they are ready to be given to others who need these components. I need antibodies (mostly IgG).
The infusions used to be given through an IV. There is a newer, less invasive way that has been developed with fewer complications – subcutaneously into the abdomen. The entire process can take up to 4 hours as it is done slowly. This is something I may have to do every few weeks for the REST OF MY LIFE. The first few months are done at a doctor’s office – afterwards it is possible to do them at home. Anything that can make this less invasive, less stressful and easier to accomplish is a good thing.
So I was starting to make a decision in favor of doing the infusions. Both immunologists I consulted with said it was a “must” during these times of COVID. I want to have some sort life again without the worry of getting sick from every pathogen out there. In 2019 into 2020 I had the flus 3 times, a sinus infection, UTI’s and various colds. I was sick more than not. The when COVID hit – because of all the precautions I took I did not catch one thing from anyone the entire time but I can’t live in a bubble forever.
I received a welcome packet from the pharmaceutical company providing the infusions. On the whole back side of the 12” back of the box was the safety information, precautions and side effects. WHOA. I was sick reading this. Everything from blood clots, kidney damage, liver damage, anaphylactic shock – the list went on and on. It was everything you don’t want. I felt like I needed to have a consult with someone at the pharmaceutical company who was medically-oriented so we could discuss these. After all – if the serious side effects affected 1 out of 10,000 people then I would feel like my odds were fine.
I had a consult with one of the company’s nurses who had an oncology background. The consult lasted and hour. I don’t think she expected the level of questioning and discussion we had but she was extremely knowledgeable, helpful and honest. Before the call I was leaning 60/40 in favor of doing the infusions. Well…. Be prepared for the information you ask for because you will get it. As I said she was extremely honest.
My first questions centered around the serious side effects of liver and kidney damage and blood clots (thrombosis). She said that because the molecules are large they need a lot of work to break them down. Blood clotting again is due to the large size of the molecules and as they collect pathogens they can get “stuck”. The best way to alleviate these problems is to stay hydrated and flush everything through. Then there’s anaphylaxis or other allergic reactions. When I asked for an incidence of each of these occurances she said overall 20% of people have a severe enough reaction where they had to discontinue treatment. ONE OUT OF FIVE. Not one out of thousands. Then there are the other less life-threatening and merely annoying side effects such as headaches and fatigue that happen more commonly. Honestly I was horrified. I left that phone call now 80/20 in favor of not doing them. I thought I could just keep doing what I’ve been doing all along during the pandemic and get through to the other side.
I can and have protected myself against catching pathogens from others well but apparently it doesn’t exempt me from catching something from myself. Last week I was diagnosed with the shingles. You want to talk miserable – there you go. Painful as anything – like someone is sticking you with hot, sharp pins. They appeared on my upper arm. Shingles happens if you’ve had the chicken pox previously – the virus lies dormant in your system for a lifetime. When your immunity is low (check) and/or you are stressed (check) it can happen. Not only is shingles painful but it could cause permanent nerve damage. I had the shingles when I was going through chemotherapy. Almost exactly 6 years later I have them again. Get the shingles vaccine you say? It’s not for people who are clinically immunosuppressed because it could trigger a worse viral response.
I had been going back and forth, up and down for months about whether or not to do the infusions. I could not come up with an answer one way or another. Every day I had a different viewpoint on it, based on what I read, who I spoke to, how I felt physically and mentally. I prayed on it, I meditated on it. I kept asking for a sign. I got one and it couldn’t have been more impactful.
I called my initial immunologist, the one who would be administering the infusions. I told him about my discussion with the nurse at the pharmaceutical company. He said he has never had a really bad reaction in the years he has been administering the infusions. He said it was really well-tolerated and yes staying hydrated is the key to success.
Getting the shingles was the sign I needed to make a decision. I AM GOING TO DO THE INFUSIONS. I start Thursday September 2nd and will be sure to be well-hydrated….
Wishing you good health and a great life –
Sheryl
