If you read this blog for the crazy kid stories or adoption info, this is not your post. If you know me and have been wondering where in the world I have been, well, this post is for you.
I got sick less than 2 weeks after coming home from Africa. Fevers of 101+ for a couple of weeks. Then the cough started. Then the cough developed into pneumonia. Then I never really recovered from the pneumonia. Then I got strep. Then I couldn’t breathe. I almost got well over Christmas break, but when the new semester started, I started seeing sick patients in the clinic. My kids were coming home from school with the 12 colds/year that most elementary kids have. The fevers came back with a vengeance, which I’ve had for over 2 weeks now. Then I got horrible flu-like symptoms. Then I got strep. Then I got a respiratory fungal infection. Now I REALLY can’t breathe.
I have not had a single week in which I’ve been well for 6 months. I am on antibiotics, antifungals, steroids, nebulizers, nutritional supplements, and on and on and on. This is particularly vexing because steroids make fungal infections worse, but I cannot breathe without the steroids, which make the fungal infection worse. I cannot breathe well enough to have a conversation. My muscles in my chest and back HURT from trying to breathe. I feel like my face is going to explode. I can feel my pulse in my teeth.
The clinic that has seen this all go down is actually my asthma clinic. They began to wonder in December why I could not get well. Mostly because I was asking them why I couldn’t get well. Not only are they an asthma clinic, they are an immunology clinic, so this was very reasonable for me to ask. I think if you see me sick every 6 months, it’s easy to not hear the “I’ve been sick the entire six months.” My white count is always elevated but never very impressive. I feel worse than my bloodwork looks. Always.
So in December, we started testing out my immune system, and found that though I’m sick a lot, and have had pneumonia a lot, I’m not immune to all but one strain of pneumonia. So they vaccinated me against pneumonia. But meanwhile, my allergy antibodies (IgE) were very high, even in the middle of winter with nothing blooming (yet).
Currently, I am on most classes of medications known to mankind, but I still can’t get well. In the middle of the night last night, I was sleeping on the couch (sitting up) and our dog, Holly, ran in and woke up Ken and brought him to me. I was having trouble breathing. Now unfortunately, she thinks the cure for not breathing is laying on my chest, but she was right about me not breathing. Nor could I quite wake up to realize I was not breathing well. Ken got me a nebulizer and got my lungs going again, but I realized when I am relying on my dog to wake me when I’m not breathing, I may need some additional medical attention. Holly continued pawing at my chest and whining until I called Vanderbilt. And my NPs cell phone.
My NP agreed to see me this afternoon. (Praise the Lord she had given me her cell phone number.) Sure enough, I’m sick and having trouble breathing. After emergency treatment, I am now breathing well enough to still need emergency treatment. The treatment helps, but when my breathing is this bad, my best is still considered an emergency.
She went over my lab results with me, which in hindsight make a lot of sense. I have an IgG (infection fighting antibody) deficiency. I did not mount an immune response to the vaccine I got in December. This is why I cannot get well when I get sick. She noticed a pattern that when I get sick, I don’t just get a little sick. I get really sick, but my white blood cell count doesn’t respond, so it makes it look sorta like I’m not really sick. I just hover at nonwellness for a long time.
The other issue is that my IgE antibodies are elevated, which means my asthma is crazy out of control and my body treats every insult to my lungs like my lungs are trying to kill me. They are actually being fairly successful at that right now.
So we’ve decided to try immunotherapy: suppressing my IgE and giving me IgG. Because my lungs are going to kill me more than the infection, we’re going to do the IgE supression therapy first. I signed over my life today, which is apparently necessary to get this treatment. I just have to wait for insurance to approve it.
Tick. Tock. Tick. Tock. Tick. Tock.
It’s $2000/month, so I really can’t afford to just start it without them approving it. Which usually means a battle waged between a nonmedical provider behind a desk in Watchkatoochie, Wyoming versus the medical staff at Vanderbilt. I’ll still have the $5000 deductible to contend with but being disabled is a whole lot more expensive. Once the deductible is met, then I’ll be able to afford the IgG therapy, if insurance will approve that too. Let’s hope the Watchkatoochians are feeling favorably toward me this time of year.
In the mean time, I’ve switched antibiotics, antifungals, nebulizers, and increased my steroids today. I’m too sick to be in the hospital with a deficient immune system.
So that’s where I am: tucked in bed, with my nebulizer on one side, and my asthma-sniffing dog on the other. I’m thankful for a Nurse Pracitioner who wondered enough why I’m not well to actually do something about it, instead of just scratch her head and wish me well. I’m also thankful that there’s at least a proposed answer and hope that one day I may join the walking and working well again.
6 thoughts on “Where in the World Have I Been?”
So sorry that you are soooo sick, Robin! Praying for you that everything gets approved and this treatment works!!!
When you don’t “talk” about your health, my optimistic side wants to hope that “no news is good news;” however, I apparently should go ahead and listen to my not-so-optimistic side. Ugh. I HATE not being able to do anything tangible to help.
I feel like I’ve been living under a rock lately to not know its been six months straight. Holy cow Robin! Joining you in prayer for recovery and this new treatment to work as well as be paid for. Praying for a tangible miracle for you guys.
So hard to be sick and to be a mom that requires such intentional parenting. Stay in bed and get well and get the kiddos to sanitize like crazy when coming in the house. Praying that the insurance will cover and it will be the right fix…and above else the dog stays close…ever thought of a cpap machine in the interm?
Uhm, is there anyway you could get on oxygen at least while sleeping? I know you’re good at compensating with your O2 sats but you’re like a pediatrics case, you look great a while and then you drop I’ve watched you do it! They have respiratory isolation, and it sounds like you need to be in the hospital. Dr. Gerdom taught us about these fungal infections. They don’t play. Are you being stubborn? I know you’ve got that streak, my friend, and I admire it but if you’re needing to be in the hospital isolated, there are ways to work that out! My guess is that your family will be a lot better off if your brain is getting oxygen. I’ve been worried, and I care a great deal about you, since you and your husband are probably the kindest people I’ve ever met. I want to do something to help. I’m putting on my thinking cap.
Wow, I had no idea all this was going on Prof. Jewett! Would +pressure assisted breathing treatments, bipap, and/or supplemental O2 be options for home treatments? Not as good as a your asthma-sniffing canine caretaker, but worth a mention? Please know we are praying for your healing and comfort.