The second dose of the second round of IVIG was done yesterday. I don’t sleep on the nights after an infusion so I’m exhausted today. I get tachycardia all night and flu like symptoms for the next day or two after. I do two doses separated by a day in one week, followed by another two the next week, then two weeks off. Each infusion takes about 5 hours.
The IVIG works. The burning pain that started out very mild back in June and July, that slowly built up to a severe 7 or 8 out of 10 on the pain scale during October and November, has almost entirely gone away. It’s incredible. I barely notice it now. And it feels different, maybe that’s the nerves healing instead of being damaged? It’s so incredible how quickly you forget what horrible pain feels like. In my mind I know it was horrible, I remember laying at home all day curled up in a ball sobbing sometimes because it just wouldn’t stop, and no drug stops that type of neurological pain. I remember crying in the ER pleading for them to do something. But that’s basically gone, and now I just have these oddly rational memories of it being really-really bad, but can’t feel it.
My orthostatic measurements are improving too. Back in November before the first round of IVIG my standing heart rate had worsened to the point where it was ranging between 130 bpm to at times an incredible 160 bpm. It’s now ranging anywhere from 110 to 130. My standing diastolic blood pressure prior to the first round was typically over 100 mmHg, usually something like 105 mmHg. Now it seems to be always measuring below 100 mmHg, around 95 mmHg usually. These are huge shifts. They are still very bad. But they’re huge shifts in the right direction.
I’ve started to feel a bit better on my feet, to the point where for the first time in many months I’ve been able to take a few short 10 minute walks.
I am still severely fatigued and have a lot of brain fog, but I expect that will take the longest time to start improving.
On one of these recent 10 minute walks I went to a coffee shop. Someone next to me was talking graph programming, graph coloring and traversal, etc. on the phone with someone else. I’m such a huge nerd, it really reminded me of the passion I have for networking and how much I’d like to get back to work at some point. It’s hard to believe I’ve been sick now for 20 months. (Most people don’t realize it’s that long, because I’ve only been on STD for 12 months.)
Based on the results so far I have no doubt in my mind now if I were able to find a viable way to continue the IVIG I would continue to improve.
But nobody has yet presented us with the help required to make that happen.
I am supposed to get regular tests to monitor my liver and kidney function. I’ve not had those in two months because I still don’t have a PCP. Here in Portland, ME there’s a 3 month wait list for PCPs at all locations, forget about all the specialist help I need. It’s absurd. I had a number of doctors in Seattle that were able to intervene with their expertise in any area that was necessary during my ongoing treatment, I have none of those now out here.
- An awesome primary care doctor who was wonderful in every which way, followed up on everything, and gave me all the support I needed to deal with this challenging illness. When you have a complex and difficult to understand illness like mine it takes a while to find a good doctor who will learn about it like she did. I miss her very much.
- An awesome immunologist/infectious disease specialist, who deals in complex cases and was the one who worked out what was wrong with me. I’d be no where if we hadn’t been lucky enough to see her, she is a god send to people with illness like mine that take some working up to diagnose.
- An awesome neurologist who could monitor my neurological changes, understood what was going on.
- An endocrinologist who was due to do a bunch of stimulation tests to make sure all my endocrine functions were working fine — tests which we had to cancel due to the move and still haven’t be done.
- A cool cardiologist who kept track of my heart condition through the stresses that the illness is putting on it, a specialist that would be very helpful to have right now because one of the things happening after the IVIG infusions appears to be an arrhythmia. Back home, he would be able to have me come in the day before my next round stick on a ambulatory cardiac monitor to wear, and we’d review the results after the round of infusions and know if it was a serious side effect to worry about or not. I have no way to get that here for months.
- A sleep doctor, for which there isn’t much to be done now but surgery.
- Surgeons, for surgery that now I’m not getting:
Before we left Seattle I had a surgery scheduled to correct the airflow in my nose, turns out of have a pretty insanely deviated septum and enlarged turbinate. Fixing this should help improve my sleep quality since I have mild sleep apnea. Improving sleep quality is always a good thing for a sick person. We had to cancel that of course due to needing to move because the IVIG was denied. So my sleep quality wasn’t fixed due to this situation.
I also was scheduled to start the work necessary for jaw surgery (something called a maxillomandibular advancement) to advance my jaws and pull my tongue forward, again for the sleep apnea, and because for some reason my jaws have become so misaligned I’m biting my tongue (and it constantly hurts). We had to cancel that too of course. It takes a looong time to set that one up, it’s basically never going to happen now unless we go home in the next couple of months and start up the process again. The only problem is the surgery is pretty serious, it’s not advisable for me with my condition to get it without being on IVIG, so how do I do all the orthodontic pre-work if it turns out when it comes time for the surgery I don’t know if I’m going to be on the IVIG? You can’t undo the pre-work! You need to know ahead of time that you’ll be covered for the IVIG through the surgery.
Vi is getting sick. We’re not sure what it is. We don’t have a primary care for her for the same reasons above. So she went to the urgent care, where they suspected Lyme and have run a Lyme test. God I hope it’s not Lyme. I’ve learned way too much about Lyme over the past year and it’s a horrible-horrible fucking thing that is so badly misunderstood and stigmatized by most people.
Vi has suspected fibromyalgia, that has been diagnosed previously by a rheumatologist and neurologist. It can be a serious condition, for her as with a lot of people, it’s been mostly a background thing that hasn’t really caused a major problem. But now she’s having worsening symptoms, pain, and fatigue. She’s been warned about the stress making things worse, and now the stress put on her with this move, having to take care of me full time without any support, and just the emotional toll of not having friends around (which can’t be understated), seems to be making her sick.
Denying my IVIG coverage, forcing us to move so I could get this simple fricken drug, so I could experience what it’s like not to feel like I’m covered in napalm and be able to stand up and walk again, is directly linked to making my wife stressed and sick.
This situation has begun to snowball.
If we go home, we’ll have support, we’ll have doctors, we won’t be alone. But I won’t have IVIG and I’ll continue to get sick, those 10 minute walks won’t ever grow into 20 or 30 or 60 minute walks, and I can forget about hoping to return to work. Maybe the horrible burning pain returns and I sink into regret for making the decision, crying again in emergency rooms as doctors tell me they can do nothing because my health plan won’t cover the IVIG, just as they did in November.
But it might prevent Vi, who I love so dearly, and who after all is my full time care taker from getting sick.
Medicare doesn’t start until July 2020. Realistically that’s how long we have to decide to remain exiled out here, unless someone gives us the help needed to get covered for IVIG so we can go back home.
If we stay, maybe I keep getting better on the IVIG. (But then again maybe I die of a heart attack because I don’t have a fricken cardiologist on my team for the next four months who can throw a simple holter monitor on me, like I do have back home. I certainly don’t get the sleep apnea fixed.)
Maybe even though we stay and continue the IVIG, it’s not enough to get me back to work, maybe all I get from it is a quality of life improvement, I can live pain free, and go for walks, and do basic household stuff to take care of myself. Don’t get me wrong, that is a big deal. Going from being bed bound in pain, completely dependent on someone else, to being able to stand up in the kitchen and make yourself a meal is night and day. If you haven’t been there it’s impossible to relate.
But maybe Vi continues to get really sick. Then who is around to help? That seems like a very bad scenario.
And if I do get well enough to return to work, I still haven’t had anyone explain to me how that will even possible without a return to the west coast, and a return to the west coast wouldn’t be possible without being covered for IVIG on Juniper’s health plan.
Impossible to understand
I still can’t understand the lack of help. I get the world is a shitty, horrible place, and there’s a lot of people suffering in the United States. But I’m lucky enough to be an engineer at a $10 billion Silicon Valley tech company who was covered by their health plan. That health plan had no problems paying around $80,000 for the various diagnostics and emergency room visits and hospital stays leading up to the diagnosis and request for IVIG. But then when it came to that request for the treatment that can stop it all that, the treatment that is working and making me better as we speak. A request that was made by some of the best doctors in the country who treat that specific condition. That health plan parsed it like a firewall, against it’s very short policy, dropped it into the default deny, pointed the finger at my employer, and seemingly didn’t even bother to read the appeal letters from my doctors. They didn’t ask any questions, they didn’t talk to my doctors. Just like that, denied treatment and left to remain severely disabled and in pain without any more thought or care.
This isn’t what anyone would expect. When we have a $10-billion-Silicon-Valley-tech-company health plan, we’re not supposed to be left in torturous pain, crippled and unable to stand and walk, when there’s a simple, safe, and effective drug that reverses that. Sure we might have co-pays, and deductibles, and so on. And I’ve probably spent about $25,000 (excluding this recent move to the east coast) on things that weren’t covered. Or visits to specialists in other states and so on. That’s expected. But not covering the drug that fixes a person. How can this be.