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Posted on 10. April 2014

IVIG: Is There No Place Like Home?

By Paulina Brooks

For the last six months, I have been afflicted by paralysis. Not the paralysis that can occur with a diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP). My paralysis was emotional, the result of frustration that arose from misleading information regarding my treatment options. Before my first intravenous immune globulin (IVIG) treatment, I felt so grateful for this life-saving therapy and fortunate to receive it in the comfort of my own home. Sadly, everything from covered benefits to the competency of my caregivers turned out to be less than a positive experience.

As I quickly discovered, the home health agency’s staff was neither proficient in infusion therapy nor familiar with IVIG. Equally important to me is continuity of care, something that in my case they were unwilling to provide. The reason? As the agency’s only patient ever to receive IVIG, its nursing director saw me as an opportunity for training, and my home - my sanctuary - became a revolving door as nurses came in and out to observe me. 

Clearly, their focus was not on patient care. I felt like the girl in the bubble, an experiment of sorts, rather than a human being fighting to overcome a serious neurological disease. And, while I am very fortunate to have a physician for a husband who supervised those nurses and taught them as much as he could about IVIG, I am keen on separating his role as a doctor from that of my partner of 20 years.  

I terminated that agency’s contract after just two courses of IVIG. I did not want to experience something so intrusive ever again. Subsequently, my insurance denied all claims. Records to prove medical necessity for IVIG were required to file appeals and resume therapy, but my neurologist became complacent; it was neither his obligation to provide supporting documentation, nor my job to “stress out” trying to find a way to get treatment.      

Obviously, the manner in which my former doctor dismissed my concerns, and even the way the IVIG itself was delivered, left much to be desired. No one on my medical team shared my sense of urgency, and it infuriated me. Eventually, I looked for a new specialist and made the decision to go to an infusion center, although the thought of the latter frightened me. I pictured the hospital setting as a cold and very impersonal environment, surely as depressing as scenarios portrayed in movies. But this was my only option and the choice that ultimately made sense for me. The good news is, I was wrong! Today, I have a new specialist affiliated with the hospital where I receive my monthly infusions, and all costs are covered.

Living with a debilitating condition has left me with limited social interaction; the infusion center gives me an opportunity to change that. Witnessing other patients go through their various treatments has helped me see that I am not isolated after all, and rather than dreading treatment, I am now confident in its delivery because I can count on the same friendly and knowledgeable staff to treat me with dignity and respect. 

When we live with a chronic illness, our outlook on life and compliance with a plan of care depends highly on effective communication with everyone involved. As with every personal journey, we all must strive to find what works, and along the way, we learn more about ourselves. The road to my newly found peace of mind and improved health was not easy, but knowing that I can take an active role in my care empowered me - even if that meant changing physicians and treatment facilities. IVIG has indeed given me not only life in more ways than one, but also a voice.

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Comments (16) -

Sheila
4:11 PM on Thursday, April 10, 2014

I can totally sympathize with this post.  For the first 8 years I received my IVIG in the home and for most of that every 2 weeks.  I became a living pin cushion.  My worst experience was 13 sticks and 2 different nurses before they finally got my IV in.  They never had qualified IV nurses and when they would get one that was fairly good, she never stayed for long.

I now receive my IVIG at an infusion center at a hospital close to home.  It is wonderful to have the same nurses and they are all good at what they do.  Since this is in a hospital setting I have to walk through the hospital to the elevator.  Take a crowded elevator to the 7th floor amongst ill people.  Needless to say the last two years I have not been the healthiest because of this.  Now that I only have Medicare this is my only option.

Leigh
5:54 AM on Friday, April 11, 2014

I think for everyone it's a very individual decision. For me, when first diagnosed, I was set up with an Oncologist/Hematologist and would infuse at his office infusion center. I did this there for 2 years. The last 6 months were horrible. I would infuse on a Friday and come back to him every following Monday with flu like symptoms and literally could not hold my head up. He said every time I had the flu, 4 months in a row. In addition to this, the last 6 treatments were horrible. They would iv me up, get me all relaxed in my chair, give me iv benedryl,and I'd knock out. Then when the ig started I knew because I would come flying out of that chair in excruciating pain. It was causing horrific back spasms. I was afraid I was going to scare the cancer patients beside me getting their chemo. By this time I had found the IDF and met others and knew enough to ask for a different brand to try. I was told, "brand?" we just order it and they send what the send. I then knew I needed a doctor who specialized in my illness not a cancer doctor. I switched doctors and immediately started home infusions. I didn't realize until my 3rd home infusion how stressful the infusion center was for me. I started crying my eyes out just before the benedryl knocked me out and my husband was terrified. Are you ok, what's wrong? I realized then that just before I would fall asleep at the infusion center, I would catch myself looking around the room. All the bald heads, scarves and wigs. Everyone looking so sick and pale and gaunt. My last thoughts were always, today IG tomorrow chemo. It was so depressing to me and I didn't even realize it. Infusing at home has it's challenges since I have a 6 year old and 2 year old that can be loud and crazy at times and forget to be quiet Mommy's sleeping with prince Benny (benny dryl that is) But I wouldn't change it for anything. My nurse has been my nurse for right about a year now and my kids call her "aunt" because she's just become a member of our family. I'm very grateful that I can infuse at home, with my husband and kids nearby and in my nightgown with my dog cuddled up beside me.

Leigh
5:57 AM on Friday, April 11, 2014

I also wanted to add, I even became resentful of cancer patients. I know, how crazy is that, right? But they would talk to each other and say oh I only have 3 more treatments, this is my last one! and I was angry. I wanted to yell at them, well aren't you lucky? I have to do this as long as I live. My last treatment will be my last because I'm dead. I mean who gets crazy angry with cancer patients like that? It was the depression, I realize now. I'm glad I never yelled at them "well at least there is an end for you"!!!  Because, even though there is no end to my treatments, they were losing their lives, that was their end. Puts things into perspective.

Donna
6:08 AM on Friday, April 11, 2014

I was forced to go to a new infusion center because my insurance changed.  All centers are not the same and the quality of the service is certainly not the same.  I was so glad when the insurance company let me return to my original provider.  The nurses are great and the delivery of the ivig is always very professional.  That was not the case at the second ivig delivery center.  My arm swelled up like a football everytime because they had not stuck me in the correct place.  If you are fortunate to have a quality ivig delivery source count your blessings.  

Lianne Learnard
7:33 AM on Friday, April 11, 2014

Pauline, I am so sorry for your bad experience. We did do home health with my daughter and we loved it.  We now have SCIG and we need no nurses or visitors.  SHe can study watch TV. cook or just relax.  She find ultimate freedom doing her own treatment on her own terms when she wants to.

Don't give up!!  Keep trying until you are happy, remember you have to be your own best advocate.  You pay the care givers, don;t be afraid to speak up.

Debbie Moreno
7:54 AM on Friday, April 11, 2014

I am so sorry about your experience with home health infusion.  I have been receiving home health infusion for over 5 years now and I realize how fortunate I am to have a wonderful nurse that makes the infusion comfortable and pass by quickly.  I'm able to work from home during this time and just relax when I need to.  I count my blessings!

Earl Frazier
8:49 AM on Friday, April 11, 2014

I am very fortunate in that my infusion is done by a Nurse who previously worked for the University of Michigan.  He is a very caring individual who maintains a high level of professionalism.  For those of you do not have this same level care, I suggest that you take charge of your own situation.  Contact the agency or company that is providing your caregivers and make them aware of the unacceptable performance of your caregivers and request a change for the better.  The other option is to talk with your Doctor and ask for their assistance.  Remember it is up to you act to improve your situation.  

Kim
1:48 PM on Friday, April 11, 2014

Why is it that some people do subq like I do and others do IVIG.Is this something to do with insurance?

Linda Thornrose
2:09 PM on Friday, April 11, 2014

After reading all these comments, I feel especially blessed!  I have been receiving home infusions since my third treatment, every 28 days, for ten years.  I have had the same nurse who has become a friend.  It is so great to be in the comfort of my home, in my nightgown with access to my bed, bathroom, kitchen, phone, computer, etc.  My IVIG takes about seven hours, so it is a wonderful option for me.  My nurse is getting close to retirement and I am praying I will get another good one.  Her replacement when she is out (rarely) has been good, too.  I dread ever having to go to an infusion center because of the exposure to sick folks.  The longer I have had to deal with all of this, the more I believe educating yourself and being your own advocate is the best advice you can have.  Don't give up until you get the quality you should have.

Sheila
3:51 PM on Friday, April 11, 2014

For me now, getting IVIG at the hospital has been the cheapest way to go since I only have Medicare.  My portion every 2 weeks with only Medicare would be $500-$600 per IV since they only pay 80%.  The hospital I go to has financial assistance so they only bill me $35 per IV which is a blessing since I'm on disability.

I'm currently exploring my options with SubQ, but as I understand Medicare only pays 80% of that as well and does not pay for supplies.  I'm a little afraid to switch from IVIG to SubQ.  I would like to hear from anyone that has CVID and it affects their lungs who is on SubQ and has had good results.  I read an article a while back that said IVIG was better for those who suffer lung issues because it goes into the vein and straight through to the lungs.  I've also heard from other CVID patients that said IVIG works better for those that suffer joint issues.

In the end for me it will all come down to $$$.  I really don't have options.  Being under the age of 65, divorced, disabled and only having Medicare dictates my life with CVID.  I was recently informed while investigating my insurance options that there are only 22 states that allow one under the age of 65 to have a supplement.  You are only allowed one Federally subsidized  insurance and if you have Medicare that is it.  So a supplement for me would be at full premium, if you live in the right state.  I could never afford a monthly premium.  The first quote I got was $477/month.  Since I worked my whole life until I became disabled I don't qualify for Medicaid anywhere because I make too much money on my disability, even though it is below poverty level and my medical expenses are high.

For those of you that can choose how you receive your treatments, have good insurance, have homes and family support, you are truly blessed.  As for me, I have to worry that I can get my treatments, bounce from family member to friends because I can't even afford subsidized housing.  Because of housing issues I'm looking at moving to Arizona with my elderly mother.  So anyone having information on medical assistance in Arizona I would greatly appreciate it.

I hope that wasn't too depressing.  On the up side, even though I lost my great insurance due to my divorce, I left an abusive marriage and even with all my struggles I'm still in a better place then I was then.  I haven't given up yet and am still fighting.








Kim
5:05 PM on Friday, April 11, 2014

I am hoping and praying I will get disability through the school system so I can keep my insurance . I am trying for disability after working 3 years in a moldy building feeling horrible. I wish you could get the subq. It seems like it would be less painful. God bless!

Linda Thornrose
9:25 AM on Tuesday, April 15, 2014

Kim, I tried subq, but it didn't work for me due to tape allergies, and irritations at each needle site.  I am back to IVIG because it is more convenient for me to give up one day a month than have to deal with weekly subq.  I think it all comes down to personal preference.  

Ellen Stanley
4:30 PM on Saturday, April 26, 2014

My son who has CVID since 2003 was getting his IVIG in a Hem-Onc clinic setting until 2008 at which time he changed to SCIG. In 2012, he was dx with T cell rich B cell lymphoma and received R-CHOP every 3 weeks on Wednesdays and IVIG  every 3 weeks on Friday. I felt his treatment was sub standard so I convinced him to go to a university hospital which is 3 hours away from our home. Despite the fact that he still has his mediport, his Immunologist orders his gamma globulin weekly and subcutaneously because his levels remain steady as opposed to troughs with IVIG every 3 weeks. From his cancer and CVID, he has severe GLILD. Bottom line is it takes numerous specialists and I feel the only reason  he is still alive is because of the quality care he receives from all his doctors. With their team effort along with his PCP locally, he has been able to stay on top of things with minimal hospitalizations.

Ellen Stanley
7:50 AM on Tuesday, April 29, 2014

I have to respond to the blogger who became resentful  of cancer pt's because they were "lucky" because their course of chemo was limited. Did you ever stop to think that maybe these people were a on life long IVIG also? The next time my son is getting chemo one day and IVIG the next, I will remind him just how lucky he is. He is not only facing risks of infection from CVID but also due to his neutropenia from chemo. He takes narcotics when he does his Neulasta for the bone pain from trying to hype up the marrow to make WBC's. I can identify with your anger but until you know the fear from hearing that you have cancer, don't judge other people. I was hoping this IG blog would be beneficial in helping us deal with some of the things we have been enduring over the last 10 years, but I am signing off for good. Mam, you owe ALL cancer patient's an apology as your excuse for your anger is not acceptable. Pray to God that your words never come back to haunt you.8% of PID patient's get Lymphoma Good bye.

Linda Thornrose
6:50 AM on Wednesday, April 30, 2014

Ellen, while I agree with your frustration, I also understand the person who shared her frustration and don't believe anything personal was meant by her story.  I honestly believe this forum is for folks to share their experiences and their own set of circumstances and resulting perceptions from those things happening to them. Also their solutions for trying to cope with difficult situations. I cannot believe either of you means to be mean or angry with any one person, only with your own individual battles.  Please take a deep breath and try to understand the other person's point of view.  If she knew your son was having to endure cancer treatments along with IVIG, I feel she would be very sympathetic, along with sorry that her comments caused you pain.  I will be praying for your son, you, and all who love him, as you endure these horrifying diagnoses and treatments; and that he comes out of it healed of the cancer with the chemo and support drugs finally behind him.  May God strengthen all of you as you continue this fight.

Linda Thornrose
6:55 AM on Wednesday, April 30, 2014

Ellen, please, one more thing.  I am encouraged and amazed at your son's story and the importance of having a team of doctors who work together.  I have often been frustrated, as recent as last month, when the hospital doctor did not contact my hem/onc or lung doctor during my six day hospital stay with an acute upper respiratory and sinus infection.  Two weeks after the hospital stay, I saw my lung dr. and he put me on another three weeks of antibiotics stating his treatment and diagnostic testing would have been different.  Then I contacted my hem/onc regarding a question I had and they hadn't even been notified of my hospitalization!  Here I am over a month later and still sick with more antibiotics to take.  So I am in total agreement that your son, and most of us, benefit from a team of doctors who consult with each other to determine the best treatments for the patient.  Thank you for sharing that with us.

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