Good News– About time!

Well y’all, I have some great news. About time, right? Let me start by saying that I’m thrilled with this news. It’s incredibly exciting for me as well as for my family, but, I am writing this post and explaining this news to you because although it is wonderful news, and it is what I’ve been waiting for forever, it’s not going to be a walk in the park, piece of cake, cure all for me… it’s a complicated treatment that is not widely used for my condition but nonetheless, my best shot.

A couple of days ago I got the news that my IVIG has finally been approved, and not just for one dose, but for 13 rounds.  We’ve waited over a year and seen 3+ specialists in order to make this happen, it’s been a crazy battle to get to this point. On Monday 2/19 I will have my first round!

IVIG is IV immunoglobulin therapy. Essentially it is meant to reboot your immune system and help alleviate or reduce the symptoms of autoimmune or immune conditions. For me, the catch is that I do not have the typical conditions that IVIG is currently used to treat. There are many trials going on with how IVIG can help different conditions, gastroparesis included, but there’s no FDA approval for IVIG as treatment for it yet. That said, this is my only viable option left and because I do have an immunodeficiency, I was finally able to get it approved.

Throughout this process I’ve heard a lot of “slim possibility,” “doubtful,” “statistically…” “honestly…” “be prepared for disappointment…” and all of the other phrases doctors use to tell you they don’t think things will work…

BUT, we heard someone say, “it’s worth a shot,” and here we are today, after a long fight, ready to start a new trial.

IVIG is something my family and I decided was our best chance for change. Not all of my doctors agree, but when do they ever? It’s not a treatment widely used for gastroparesis or EDS/Dysautonomia, but because my immune system is involved, there’s a chance my GI system could respond in some way to it. My motility specialist is the one who suggested it as one of my last 3 options for treatment; today, this is the only one of those three options that I have left.

We don’t expect miracles. In fact, I try not to make expectations at all. I hope it works. It would be incredible. But if it doesn’t, I don’t want to be crushed. I’ve been warned by doctor after doctor that it is likely not going to help, so I’ve pretty much got that in my head, but I also have my own hope and positivity in there thinking maybe this is going to be it. I’m not a blind optimist, but I do have hope. It may be hard for some of you to understand that combination of emotions and feelings, but I’m glad it is, because it means you’ve never had to be this sick, and for that I am thankful.

I wrote this update because I know you all care, I know you all want and deserve an update, but I also needed to share with you how this process is going for me. It’s not going to be an easy treatment. It’s not a miracle drug. It’s not a guarantee of success or relief. It’s a treatment that is extremely hard on the body. It has major side effects. It’s a long shot. But it’s my only shot.

IVIG is what I’ve been fighting for and waiting for for a year. I’m so, so relieved that the fight for approval is over, but that doesn’t mean my battle is over, it’s onto the next step now. My family and I have worked so hard for this; hours of phone calls, emails, paper work, doctor visits, denials, tears…what a journey it has been, and now the journey continues. It will take at least 3-4 months to see any results even if this treatment does work. All great things take time.

What I need in this time is for my support team to just be here for me. I will update if there are any improvements or changes, I will update on how the treatment is going and if I am having any side effects or complications, and I will do my best to post regularly so you know whats happening in general. Try not to set expectations, have no disappointment, no pity or sadness if I see no results, no explanations of why it hasn’t worked or reassurances about when it will, just be here for me.

All I need is love. Support. Laughter. Company. Friendship. Exploration. Care. Distraction.

I’m sick and treatment is hard and unpleasant, but I have my ways of coping and I am still a person and sometimes I just need to be Rachel.

 

xoxo

A Battle With The System: Fighting For Treatment

Nine months ago my motility specialist gave me three treatment options. My digestive tract paralysis had progressed from my stomach into my intestines and colon and there just isn’t much they can do for that.

Option one– a specific medication –was quickly ruled out due to risks with another condition I have and the third option is not doable either, so we were left with one option.

Our one treatment option was IVIG therapy, or IV immunoglobulin therapy. This is a treatment that focuses on rebooting the immune system and can sometimes help reset some of the issues with the central nervous system. It’s used to treat immune deficiencies and other conditions that can lead to a weak immune system. For me, the goal is to boost my system in hopes that my digestive tract will be positively affected. There are no guarantees and it’s only about a 50/50 chance that it would make any difference at all for me, but it is our best and only real option right now.

It’s been nine months since we put the prescriptions in for that and I’ve been denied by insurance twice. My illnesses aren’t on their list of conditions that require IVIG for treatment and each round of IVIG costs $10-15,000, so it’s not easy to get approved for patients like me.

That said, this is my only option for treatment that may help me improve, not just keep me comfortable. Even if all it does is help me tolerate my tube feeds better and have less pain or nausea, it would be a huge victory. This is what my doctors think I need. So being denied the opportunity to try it is really upsetting; sadly, we see this happen a lot in the chronic illness community.

Our medical system is a money making business, so a lot of medications and treatments take pre-authorization, out of pocket co-pays, repeated appeals, and some are not covered at all. But for those of us with severe, chronic and progressive illnesses, this can make it hard for us to live any semblance of a “normal” life.

I am so thankful to have good health insurance, but the hoops I have to jump through and the delays in my care are extremely frustrating at times. My parents and I spend hours each month calling the insurance agency and calling doctors and pharmacies to advocate for the treatments I need. I’m lucky to have people who fight for my care when I’m not strong enough to do it myself, not everyone is that blessed.

If our doctors prescribe us a medication or treatment option that they think is vital to our health care, insurance agencies should not be so quick to deny it. The lives and well being of patients should be the first concern of every part of our medical system.