I’m still struggling to get through my recent health emergency, and it is not easy. Even though I have the limitations of this, I know every moment I’m still breathing I have to try and think about getting the answer for David Noah.

I don’t like that I woke up this morning, and the pain below my right rib cage is getting worse again. This does not bode well for me…

Begin forwarded message:

From: Tara
Date: July 2, 2013 10:07:53 AM PDT
To: RG
Subject: C3 deficiency (?)

RG,

I’ve been thinking about your email, and it reminds me of an ALPS test that my son David Noah did through the immunology lab at Cincinnati’s Children’s Hospital–

While they determined that the results were not consistent with ALPS, every immune equation they had that had C3 in it, the results were off–

(So they didn’t label the test ‘normal’.)

I will dig up those results for you, but I remember vividly wondering about this C3–that would also fit within your complement deficiency theory, and reading what I’ve read about it (though my limited understanding), it sounds like a complement deficiency would definitely explain a lot of what is going on with us–

Right now on my case, everyone is marveling over the photograph of my toe when the splinter was still inside it–a normal person, it would have been swollen and red. My toe looked like it just had a minor puncture. This is just one example of so many of my atypical presentation.

Then I developed complications from the toe (because it wasn’t swollen and red, the rotting wood 1/2 inch splinter remained in my toe for 24 hours), so I became very sick about 48 hours after. 7 hours after the splinter, I had already developed an acute upper respiratory infection, that was noted by the ER doctor, when I went in for a tetanus shot and a feeling there was something still in my toe. 48 hours after the injury, my blood pressure was falling.

This came on fast.

But due to my impaired inflammatory response, I’ve been feeling inches slow my right ribcage, that is not being registered on imaging studies. It came on quickly 3 days after the puncture wood, the pain got better after ivig and antibiotics, but then 24 hours after the IV antibiotics were stopped (9 days after the IVIG), the pain below my right rib cage came back with a vengeance.

I recognize the pattern of the pain from when I had my appendix, and my gallbladder out (both times my imagining studies were unremarkable, but then finally surgeons took mercy on me),

but this is the first time I’ve had a pain has been connected to an organ that is super serious–my lung.

I warned my doctors that this day would come–that I might need dramatic help for something scarier–but now that that day is here, it’s hard to get doctors to act.

My main doctors have risen to the occasion, and really jumped in to save my life–I agree too that if the problem can be resolved with IVIG and antibiotics, that would be best.

But after being in the hospital for ten days (and I’m now today 12 days from the IVIG I had), the pain is starting to increase again.

I’ll probably need more IVIG…something difficult to get my hands on. I have a feeling the hospital (and the insurance company) are going to fight back really hard if this pain becomes excruciating again too close to my being discharged yesterday-/but it will be the end of me if it’s not addressed.

I feel like it’s a miracle the IVIG I had on June 20th brought me back from the edge…but maybe it’s going to take some big doses for awhile to get me through it.

Either way, this *entire* experience reinforces the importance of getting the answer for my son, in the hopes one day a therapy or cure might present itself. It is very difficult for most doctors to understand what is going on with me, who have not lived through my case directly with me.

I know if a surgeon investigated, he would find and maybe could address the problem (I might need to lose part of my lung in order to save the rest of me). I know this based on what I’ve been through before–it’s just finding that surgeon to investigate is the problem.

I had so many people blow me off about my gallbladder due to the countless negative imaging studies I had. Surgeons even saying to my face that based on my blood tests an imagining studies, they were convinced my pain was just phantom MS pain.

At this point, since a cure seems not likely, the most important part of getting the answer is to have a written explanation in my records for how my body processes disease, why antibiotic therapy is often necessary in the absence of an elevated wbc, and–the most important part of the letter–is a note for hospitals, insurance companies and surgeons about the importance of exploratory surgeries in general on a case like mine.

The doctors I have now (the very few and precious that they are), already do this by instinct. But they get harassed by the hospital, my insurance company, and even comments by their peers to justify why they do what they do for me.

By now, they do what they do for me because I’ve proven myself not to be a ‘crazy’. They’ve seen it with their own eyes. I don’t ask for dramatic intervention unless something truly is going on.

The problem is getting other doctors to do something–as evident now with this severe pain my right chest–which is a much scarier problem. Even when I point out my previous history–that it’s been well documented that surgeons find and address problems that imaging studies can’t find–doctors *still* don’t want to act on my behalf. (Or they’re too scared.)

I wouldn’t be here alive without Dr. S and Dr. K, but problems like the one I’m going through right now I might need to find a surgeon…or at the minimum, I’m going to need continued intensive antibiotic therapy and more IVIG to get through it. That alone is hard for most doctors to understand.

Without that, I’m not going to make it. This problem came on so fast, so furious–the old rotting wood was in my toe was in my toe for 24 hours–I’ve never felt anything like this.

This experience is a reminder how precarious my life is…how dangerous it is.

And it reinforces how badly I want to fix my son, before he even has to deal with anything like this. He’s already got a headstart on me, now that he’s doing daily antibiotic therapy, which hopefully will help put off more successfully the more serious problems I’ve developed…or at least put them off longer, or minimize the number of problems.

I just have to continue to try and get through this…but it’s not going to be easy, and I know I’m going to need a lot of medical care to do it.

Thanks again for everything 🙂

Warmly,
Tara