Unbelievable - and in my opinion, inexcusable.

Note: this entry is medical related. I don't have pictures and it's not a very fun topic. However, I've been working up a "mad" for an entire week, and I need to document what is happening to my son.

For information purposes - John's official diagnosis is most clearly described as follows:

Primary Immunodeficiency (PI)

The immune system acts to protect the body against infections caused by bacteria and viruses. In the immune system, white blood cells and antibodies called "immunoglobulins" (Ig) identify and destroy these invaders. When an immune system is incomplete or not working properly, this is called primary immunodeficiency or PI.

People with PI who have difficulty fighting infections due to low levels of immunoglobulin production can benefit from a temporary increase of Ig. This replacement Ig is made from human plasma and can be given to help prevent infections. This is called "immunoglobulin therapy," or "Ig therapy.

What types of Ig therapy are available?

People living with PI can benefit from "infusions" of Ig, which can be given three ways:

• Just below the skin - this is called subcutaneous Ig, or "Sub-Q Ig"
• Through the vein of the patient's arm - this is called intravenous Ig or "IvIg"
• Through an injection into the muscle - this is called intramuscular injection or "IM Ig"

For the past three years, John has received IvIg therapy. These are the infusions that I've written about. They are a nightmare due to the amount of time each infusion takes, as well as a scar tissue problem that has developed over time which causes John's veins to collapse and has now become very painful.

The goal all along has been to transition John to Sub-Q Ig because his IvIg treatments tend to have a "wear off" effect where the levels drop between infusions - compromising his health as well as his quality of life. Add in John's vein problems and multiple needle sticks, and it only makes sense that we look for a better way of doing things. However, John has been disagreeable with the Sub-Q plan because he is in denial and he keeps telling us that he doesn't want medical help and is, therefore, not going to proceed with treatment once he turns eighteen.

After a particularly painful infusion last month, John finally agreed to try Sub-Q, which is self administered one hour a week. His reasoning was that he can no longer trust anyone to administer the medication properly, so he is now ready to take charge of his life. I don't blame him...  the infusion from hell lasted ten hours. There was blood all over the place - clothing, carpeting, skin, equipment... all those things covered in blood. John's arms had been poked so much that they were turning black and blue before the nurse even left our home. Who wants to live like that? Certainly not my rebel son.

So off we went the very next day to meet with the Immunologist. The Immunologist was thrilled when he heard that John was ready to make the Sub-Q transition. He's been encouraging John to try this form of treatment for the past several months, but he felt that John had to make the decision on his own. The doctor immediately placed an order for one year of weekly Sub-Q infusions before we left his office. And then off we went, thinking that we had a new plan of attack and that John's quality of life would soon improve.

Last Monday I received a call from the company that makes the serum that will be used for Sub-Q. They informed me that Sub-Q treatments could not begin without one more IvIg infusion because there is a window of five to seven days required for the transition - this is to prepare the body to be most receptive to the new form of treatment. We had missed the window, so we needed to create a new window. When I told John that he had to have one more infusion, he was furious. Finally I talked him off that ledge and he agreed to go along with this plan, which was a good thing because the injection serum was already en-route to our home (it has a short shelf-life, it is very expensive, and it is in short supply and high demand - when we get the serum, we like to use it immediately as to not deny someone else treatment).

I then called the nursing company to schedule a nurse - something I have done every twenty-one days for the past three years. And this is where I started working on my "mad". I was informed by the nursing company that they would "no longer service John, due to the length of time it takes to infuse him, as well as their inability to find viable veins."

Are you kidding me? This is our health care system we are talking about. Since when do they get to pick and choose which patients they will service? What deems a patient serviceable? And who is the judge of that in the first place? Who is the suit in the office who sits behind a desk and says, "This patient will be cared for because their treatment is easy to administer, but this patient will not be cared for because they are more time consuming and difficult to work with?" What gives these people the right to deny service to my child? We are insured. They are compensated fully for their time, and I know that they are paid in full each month. But because my son's treatment takes too long, and because his veins are shot, they have all of a sudden decided to drop him from their patient care list.

The thing that makes me the most angry is that we are at the height of cold and flu season. John cannot afford to delay treatment, and treatment delayed due to a bunch of political red tape makes it far worse. Even a weeks delay could cause John's immune system to crash. And if that happens, we are looking at far more than a single day's treatment - we will be looking at hospitalization and a potential serious health crisis. But because John is no longer the ideal patient, we have no nursing service to provide the critical care that he needs. Am I the only one who sees something wrong with this picture?

All last week, my anger churned. This week, I'm beyond angry. I am now infuriated. To say that this is unbelievable is putting it mildly. I now loudly proclaim that this is an inexcusable way to treat a patient.

For one full week, I've voiced my opinion to every power that be I can think of. Finally, someone listened, and as of today, the drug company who makes the Sub-Q serum is working on finding a nurse to service John. I have no idea what to expect - all I can do is pray that this problem is remedied quickly (well... pray and keep raising a ruckus over this fiasco). Supposedly, I will hear from someone this afternoon. My hope is that today is not too late. And my prayer is that there are angels looking after my son.

Comments

[Linda]

That is absolutely disgusting! What a wonderful advocate you are for your son. Exhausting, isn't it? I certainly hope it gets better soon.

[Chiara O]

oh I hope things get resolved quickly. I am so sorry you are having to deal with this.

[Keely]

It sounds like these people are more concerned with how they feel than with helping the patient. That's too bad. Wouldn't life be great if we had no challenges? NO!!! Challenges test us and make us stronger and help us to really know who we are and what we are capable of. Good luck, sweetheart.

[Kirsten]

Oh Kelly, I can't imagine your frustration. And here's the thing: (my theory, anyway) those viable veins? Yeah, well, I can't tell you how many times (my mom has the same problem) I've had a nurse get a doctor to get my vein. If you have tough veins, it seems to take a certain touch to get them, and this poor guy has been knocked around enough. John is so lucky to have a mama who fights the good fight for him.

[becky]

Unfortunately your story with the home health company isn't unusual. It gets harder and harder to find an agency who is willing to take on complicated patients.

I'm glad the pharmacy is helping you find a nurse.

[Stacy B]

Kelly, I am so sorry to hear about this latest problem. My prayers and thoughts are with you.

[Helena]

Oh holy cow, I can't believe they said that. I'd be furious too.

[Helena]

Oh holy cow, I can't believe they said that. I'd be furious too.

[Donna]

Kelly, first hugs and a good stiff drink! Second I'm so proud of you for being so pro-active with John's care and getting angry and not freezing up. You know you both have my love and support. Good luck with the new procedure and all the best to you and John.

[slammie]

HUGE HUGS! P&PT that this gets straightened out ASAP and that the subQ works well for John.

[pcsmart]

that is totally outrageous! it is like insurance companies who drop people when they are hit by a hurricane - ridiculous. i hope you get it all worked out...

[Barb]

Oh Kel, I'm so sorry. I have no words. I sure hope they make it right.

[lynne\]

Kelly: They should know better than to mess with a mama bear and her cub. I am so sorry you are facing these frustrations. Hope better days are ahead