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Posted on 2. July 2020

Taking the Infusion Road Less Traveled

By Denise Reich

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Remember that poem by Robert Frost about the road less traveled? You may have had to read it in middle school or high school. I did. It probably isn't a coincidence this poem is taught at an age when many of us are walking a very unfamiliar road through adolescence. Does anyone else remember peer pressure? There were so many voices telling us how to dress, how to act, and what shows and rock stars we should like.

Maybe we resisted some of that pressure; maybe we didn't. That pressure didn't leave us in high school, though. It still shows up when we're adults in many places. If we're being treated for primary immunodeficiency, it can surface in opinions we're given on how to receive immune globulin (IG) infusions.

If you go online, the overwhelming consensus seems to be that receiving infusions at home — usually subcutaneous IG (SCIG), but sometimes intravenous IG (IVIG) with the help of a nurse — is the best option. But what happens when you need the road less traveled?

I'm a person who is on that less-traveled road. For several medical reasons, doing SCIG at home alone is absolutely not a safe option for me, either emotionally or physically. Allowing a nurse into my home for IVIG is also a hard "no." Given my comorbid conditions and personal needs, my best-case scenario right now is to allow medical professionals to administer and monitor my treatment in a clinical setting. It allows me to access other services at the facility on the same day as my treatment. It also helps me maintain an emotional division between home and clinic: One is my personal space; the other is where I get medical care. The separation is needed.

Oh, the pushback I've received on that.

I've drifted away from patient support groups because of the huge amount of peer pressure to perform SCIG or home IVIG. Every time I've seen someone mention getting IVIG in the hospital or infusion center on social media, I've witnessed a flurry of follow-up comments by other patients who suggest home care. It just doesn't seem to dawn on some folks that what works for them as individuals may not be a panacea for every patient. There's a lot of talk about the "freedom" that home treatment brings, but how is it "freedom" if we're endlessly pressured toward it with no regard for any personal needs we might have?

When claims are made that everyone wants to be in the "comfort of their own home" for IG therapy, they seem to forget that such a scenario is not the most comfortable for all. It assumes a certain amount of privilege — namely, that everyone has a safe home that is large enough to accommodate treatment, ensure privacy during infusions and store numerous medical supplies. It assumes everyone has a friend, relative or neighbor close by who can check on them and help in the event of an emergency or a severe adverse reaction. It presumes there are no comorbid conditions for which closer monitoring might be prudent. What if you have a tiny studio apartment (like me)? What if you have several roommates and little privacy? The answer to those questions seems to be a collective shrug.

I'm certainly not trying to convince any other zebras they need to infuse the same way I do. For some, being at home is of paramount importance, and I fully respect that. Some have had very negative experiences in infusion centers. The time and expense of travel to a treatment site are issues for many. Others truly do feel that doing SCIG at home offers freedom and convenience. All of those are totally valid reasons — but so are mine for needing a different path.

And that's the point: We all have different needs, and what might work wonderfully for one person might be less than ideal for the next. It's about knowing ourselves, knowing our needs — both medically and emotionally — and working with our doctors to make well-considered decisions for ourselves on how, when and where to be infused. Not what's the most popular. Not what has the flashiest advertising. Not what people on social media are pressing us to do. No. It needs to be about what will work best for us, as individual patients with unique personal and medical circumstances, to provide the most positive treatment experience with the most beneficial results.

One of my worst fears is insurance companies will decide home treatment is the only modality they will cover. For me, that would be devastating. If home infusions were the only covered option for me, I would have to stop treatment, regardless of the consequences for my health. The detrimental effects and risk of having IVIG or SCIG at home would just be too much.

Doctors need to be able to work with their patients to determine the best approach for them, personally. Patients and advocacy groups alike need to respect that infusing at home, even if it works beautifully for them, may not be the best choice for everyone. If you see someone on social media or at a conference discussing how clinic infusions work for them, stop trying to peer pressure them into doing something different. Some of us need the road less traveled, and I hope that can be respected and supported, both on a social and financial level.

Denise Reich lives with primary immunodeficiency, HATS, and a congenital heart condition, among other issues. Her writing has appeared in Shameless magazine, the Saturday Evening Post, The Mighty.com, the Santa Monica Review, MSN.com, the Huffington Post, numerous books in the Chicken Soup for the Soul series and many other outlets.


Comments (13) -

Libby Tough
1:48 PM on Thursday, July 02, 2020

Hi Denise, I agree with all you've said. What is great for some can be awful for someone else. My question is do insurance companies in USA allow for special access in extreme conditions?  In Canada, we have a special access program SAP that allows Drs to access treatments or meds that are otherwise not accessible.  Thank you for your article.

Gail Norris
11:12 AM on Friday, July 03, 2020

Denise, I, too prefer to go to an infusion center to get IVIG. My reasons may differ from yours - I like having both a doctor and nurse close by since the infusion center is in my immunologist's office, and I have no desire to stick myself with needles. I also have seen on various CVID sites that many are pushing subq, but I will stick with my decision. Thanks for the good article.

Jody Smith
10:58 AM on Sunday, July 05, 2020

I’m so happy you wrote this article! I could have written it (not as well as you of course) because it states my feelings exactly! I too worry about fighting with insurance AGAIN about not wanting home infusions. Now I’m signing up with Medicare and I’m not sure how that’s going to go. From what I read they’ll pay for SCIG but nothing about IVIG. Stay strong and forge ahead zebra!

Mary Cowley
7:36 PM on Monday, July 20, 2020

I was delighted to read your article. I prefer to have IVIG  in a clinic setting, also. My doctor advised this as the safest option for me medically. I’ve been getting infusions for eleven years and all my antibodies are significantly below normal levels. When I go to the clinic I’m able to have required blood draws without sitting in a waiting room full of sick people. Most importantly, I’ve learned over the last decade that being immune deficient can be socially isolating. Having my infusions at the clinic allows me to see nurses, doctors and clinic staff and patients twice a month. Some of the responsibility for my care is shouldered by others who are checking in with me at each infusion, not just resting on my initiating care. Younger patients and those with stronger immune systems often function quite normally after initiating gamma globulin therapy. SCIG can be a liberating choice. However, IVIG has benefits for those of us who aren’t rushing off to school, work or travel to museums, movie theaters and shopping.

Rick Nooner
8:39 AM on Thursday, July 23, 2020

I agree completely with you.  I have my IVIG infusions at a local cancer center.  They make me feel comfortable and provide a needed social outlet as well as the infusion itself.  My infusions are 28 days apart and they take blood for labs each time.  That wouldn't happen at home, either.  There are many reasons to prefer either method.  For me, I prefer the infusion center.  Thanks for writing about this.

Jenny Gardner
6:22 PM on Thursday, July 23, 2020

Denise, don't cave to peer pressure.  Like most things in life there is not just one way to get a job done.  You are the only one that can decide what is best for you.  

Delia Cooper
4:11 PM on Saturday, August 08, 2020

Thank you for writing this article. I, too, need to be in hospital for the infusions for medical reasons (severe allergies).  Even nurses suggest that I should try at home SCIG.  Not only that I am a very slow drip (38) and take all day.  Everyone is different and doctors need to be able to be flexible. Thanks you again.

kay welsh
7:05 AM on Sunday, August 23, 2020

Denise (and to everyone else),
I am new to IVIG. Since last year, I was getting my infusions in a Cancer Center, but the 3 hr drive and arranging childcare became too much for me, so I had my first at home infusion last month. It went badly and I developed painful phlebitis. I am scheduled for my next home infusion in a few days and I am extremely nervous. I was told I had to pick "one way only." How do I decide? Has anyone gone through this? Thanks

E. Brannon
12:17 PM on Monday, August 24, 2020

For almost six years, I've received IVIG infusions in the oncology suite and now at home. I prefer the suite. I agree there is needed separation for privacy and emotions. Just as important, a standard level of care. I have found in-home care can lack consistency.  

James Keough
11:36 AM on Friday, September 04, 2020

I agree with you Denise! I have been going to the same clinic since I was diagnosed in 2011. I know most of the nurses and they know me. It is mostly a cancer center but my doctor there is an oncologist and a hematologist. They have comfie, clinical lazy-boys, pillows and blankets, snacks and drinks, and they are always at your beck and call. I do not plan on changing my routine anytime soon.

Sharon Aronovitch
5:15 PM on Friday, October 16, 2020

I had always received IVIG at home, until I recently  had a nurse visit and 3 different RNs were unable to start my IV. Every stick blew a vein. My immunologist insisted I needed to have the infusions at the cancer center.  I’m glad I finally agreed with him. I’m enjoying this ‘me time.’ The nurses and support staff are wonderful and it’s nice to be pampered. I am asked if I would like a warm blanket or pillow, lunch is provided and as much coffee as I would like to drink.

Ginger Chriss
10:57 AM on Wednesday, October 21, 2020

Thank you, Denise, for your words. Personally I have found it more comfortable to take the infusion center route. I live in a small town only 5 minutes from our center and love the people there and feel comfortable and confident in their care. For me it is more freeing in my own situation to drive to my center, have my treatment, then return home. This leaves ME with the right to make my home separate from this medical process and allows ME to decide who I allow access to my private life. This separation is more comfortable for me. I have a friend also receiving infusion therapy and last year was told by her insurance company that she had to switch to in-home therapy. I was appalled that an insurance company can make the decision that she had to open her house to strangers so she can continue receiving life-giving infusion treatment! I pray this never happens to me. With everything else we go through on the medical scene, taking away our right to choose who and where and how we receive medical care should not be something we have to face. Thank you again, Denise, for speaking out for yourself and sharing your feelings.

Kerry Wong
8:12 PM on Monday, June 14, 2021

Yes, yes, YES ... on 2 counts:
1) I don't know why it's so hard for people to understand that there is no 1-size-fits-all treatment, and we've each got to do what feels right for us, period. That should be respected and honored (for plenty beyond treatment decisions, but especially for them).
2) There is just no way I could do IVIG at home, and I would rather get an infusion than subQ, based on the way one doctor described it (and it seemed like he was trying to nudge me in that direction). My apartment is too small, too messy (sorry, but you understand that housekeeping is not so easy with a chronic illness) to have nursing staff here ... plus I would feel like I had to be a good host looking after them, rather than sitting back letting them take care of me.  And I definitely wouldn't want to do it myself without medical staff around, because there are just too many risks there.  Most of all (though I didn't really think about it until reading what you said right now, it soooo spoke to me): "It also helps me maintain an emotional division between home and clinic: One is my personal space; the other is where I get medical care. The separation is needed."  It really is.

I know a lot of people who switched to home infusions when COVID started to shut things down (mostly by choice, I believe).  I was (and still am) just so relieved that nobody said that I had to make that switch.

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