Help Tara breathe & survive unpaid sick leave (II)

Hi, I'm Tara. And I could really use your help.

The TL; DR

I am fundraising for three months of living expenses, to support me while I am on unpaid medical leave. Anything helps. I most pressingly need money for rent and living expenses for November. If you are unable to use GoFundMe, please check out "Other Ways You Can Help" for more options.

Summary

I have a rare and debilitating autoimmune disease (Relapsing Polychondritis, or RP). I have run out of paid medical leave and have exhausted my savings. I am asking for funds to allow me to survive for three more months here in Vancouver, BC, which is where all of my doctors are. An earlier GoFundMe campaign (plus mishandled medical leave payments from my employer) has allowed me to survive this far, but I am still too sick to return to work and my doctors and I estimate that it will be months before I am able to resume even part-time employment. Because my disease is so rare, it is very difficult to find specialists with appropriate expertise, so relocating is not a great option. [I am in Canada on a work permit; returning to the US while I am still too sick to work could seriously jeopardize my health/life.]

Backstory

I am—or was—a postdoctoral researcher at UBC. [For non-academics, a postdoc is a post-PhD research position at a university. Postdocs typically do not pay well, but they can be a stepping stone to a faculty job.] Because I am in Canada on a work permit and was paid by an academic fellowship, I am ineligible for any EI or disability benefits in Canada. But because I live in Canada, I am also ineligible to receive SSI from the United States. Due to the precarious (and peculiar) nature of contingent/contract-based academic jobs and the fact that my last US employer was the University of Massachusetts/the Commonwealth of Massachusetts—which does not pay into Social Security—I am also ineligible for SSDI.

I'm 37 and have spent the majority of my adult life in academia, with the hopes of becoming a professor. I'm not partnered. And I live in Vancouver, BC, which has a fairly high cost of living. [I share a small apartment with a housemate.]

In January of 2020—after over a decade of blatant and worsening autoimmune symptoms, and 2+ decades of less blatant symptoms—I was finally diagnosed with Relapsing Polychondritis [RP], an extremely rare and serious autoimmune connective tissue/collagen vascular disease. (I was also diagnosed with Sjögren's, another autoimmune connective tissue/collagen vascular disease, at the same time.) Unfortunately, because RP is so rare, many medical doctors have never heard of it and do not know how to recognize the distinguishing signs and symptoms. It also has no blood markers, so by the time I was diagnosed I had already been very sick for quite some time; it took my kidneys beginning to visibly bleed before I was finally referred to a rheumatologist.

I spent most of 2020 on partial medical leave, with the hope that treatment would allow me to regain some functionality. But even part-time work left me exhausted and unable to do the necessary self-advocacy involved in treatment for a rare disease. And although I tried a number of conventional DMARDs (disease-modifying anti-rheumatic drugs), most produced only minor improvements. I only managed to keep working at all by relying on higher and higher doses of prednisone (a corticosteroid). Unfortunately, prednisone is a double-edged sword—it reduces pain and inflammation but can be extremely damaging; by the end of 2020 I had developed steroid-induced Cushing's syndrome. And unfortunately even prednisone failed to prevent the progression of my RP.

I began full-time medical leave in March 2021, with the hopes that higher doses of immunosuppression would allow me to slowly taper my prednisone. Unfortunately, the attempt to taper produced a dangerous airway flare by the beginning of April, leaving me unable to breathe without extreme difficulty.

Since then, I have been in and out of the hospital and on new and higher doses of immunosuppression. Between May and July, I began yet another DMARD and began jumping through bureaucratic hoops to get approval for biologic coverage. Unfortunately, my health severely deteriorated during that time, resulting a longer-term hospital admission in August 2021. I spent most of August in the hospital due to worsening breathing issues.

The upside of the August hospital stay is that it really helped to better-coordinate my medical care and added some additional experts to my team. [It also resolved doubts from certain healthcare providers who weren’t convinced that my autoimmune disease was the primary cause of my airway collapse. But the other causes they had proposed would not lead to 100% collapse of my bronchi, which makes it pretty unambiguous that this is all due to my RP.] I feel like my care is being managed a lot better now and there is a decent treatment plan in place. (See “The Medical Stuff” for more details.) But this makes it so that now—more than ever—it is essential for me to try to remain here in Vancouver with my medical team.

What I need most right now is money and more time. Treatment attempts have been going extremely slowly.

I’m now 3 infusions into biologic therapy with infliximab/Inflectra. Since it has unfortunately failed to produce sufficient improvements so far, I am currently awaiting authorization to increase my infusion schedule to every 5 weeks (vs. 8 weeks). I am also starting DMARD #5 as an adjunct therapy (I'm currently still on DMARDs #1 & 2 as well, since both produced minor improvements, but #s 3 & 4 did not help enough to justify their side effects).

Right now, I am too sick to do any work. Every ounce of energy I have has gone into breathing, managing my medical treatment, and trying to get my UBC contract and work permit extended by the duration of my medical leave. (I got a limited contract extension approved, contingent upon approval of my work permit, but am still waiting to hear from immigration on the work permit.) [In the event my work permit is not approved, I unfortunately will need to relocate to the United States ASAP.]

Although I know that the monthly budget may seem high, this includes: Rent; monthly bill payments; transportation; extended health insurance (I have to pay the employer contribution during my unpaid medical leave in addition to the employee contribution); medications, medical equipment, & services not covered by extended health; laundry; prepared meal deliveries (for half the meals each month); grocery delivery (for remaining meals); and cleaning assistance. [Due to the severity of my breathing and mobility issues at present, I need both cleaning and meal preparation help. I also need to send out the majority of my laundry (I can hand wash & hang dry some smaller items, but this is not feasible on a larger scale, particularly for warmer winter clothes).]

In the off-chance that I exceed my current fundraising goal, I will use the funds for additional months of living expenses—either to cover additional unpaid medical leave, or to supplement part-time pay once I am able to return to work part-time. [In all likelihood, I will need more than 3 more months of full-time medical leave, but my current round of medical documentation covers 3 an additional months of leave.]

The Medical Stuff

What RP does is attack cartilage and cartilage-like tissues throughout the body. Functionally, it can cause inflammation and destruction of cartilaginous structures (e.g., joints + ribcage, ears + nose, & airway + larynx) as well as organs with cartilage-like tissue like the heart valves, eyes, skin, blood vessels, and brain. RP has affected my joints, spine, ribs, ears, nose, nervous system, and larynx. One of the more dangerous complications of RP is tracheobronchomalacia, which is the collapse of the trachea and bronchi.

I also have that.

In April 2021, a dynamic CT scan of my airway showed that I had up to 85% collapse of my lower trachea and my mainstem and subsegmental bronchi.

When my doctors repeated the dynamic CT in August 2021, it showed 100% collapse. [I haven’t been able to get a copy of my August CT report, but was able to take photos of the scan.]

When a healthy person breathes out, the trachea and bronchi should flex but remain open. When I breathe out, mine collapse completely.

The airway collapse can cause my oxygen saturation (% SpO2) to plummet dramatically and unpredictably.

I now rely on ventilatory support 24/7—I had to pay out-of-pocket for a BiPAP machine, but somehow despite not being eligible for BiPAP coverage I *was* eligible for a loaner ventilator from a provincial program. (This got approved after I had already had to purchase the BiPAP.) So I use a combination of the two machines throughout the day. I have an external battery pack for the BiPAP and the ventilator has an internal battery, so they can go with me to medical appointments.

My tracheobronchomalacia—which affects my lower trachea and my mainstem + subsegmental bronchi—is now classed as very severe. Right now the plan is still to see if my airway cartilage degeneration/inflammation improves on medications, and to further see whether my breathing gets better once we’re able to reverse my prednisone-induced Cushing’s. But at this point, a long-term plan may be seeing if we (me & my medical team) can get me healthy enough for a lung transplant and/or tracheobronchoplasty.

Currently, I am considered far too high risk a candidate for either of these procedures (my doctors strongly caution against any surgery until my prednisone dosage can be safely lowered). But we also want to give medical treatments more time to work as there are distinct downsides to both surgical procedures as well. While a lung transplant would replace my damaged bronchi, it would not repair my trachea. [The average pair of transplanted lungs also lasts only a decade.] To date, there has only been one successful complete trachea transplant worldwide and it was performed earlier this year in New York, so there is no long-term data on its viability. Absent the option of a trachea transplant, the best surgical remaining treatment is a tracheobronchoplasty. Tracheobronchoplasty entails completely opening up the thoracic cavity to surgically reinforce the back of the trachea with mesh. This would help to address the posterior wall collapse (the smooth muscle at the back of the trachea), but does nothing for the damaged cartilage causing the anterior and side collapse. This surgery is also still considered experimental; it is only performed at a handful of locations worldwide and there has yet to be a randomized controlled trial. What is known, however, is that surgical stents and other operations performed on the trachea often actually increase the risk of infection and mortality. [I was initially offered a tracheotomy so that I would be able to connect a ventilator directly to my windpipe rather than having to wear a BiPAP mask or use mouthpiece ventilation, but I opted against it because it (a) would dramatically increase the chance of infection, and (b) had the potential to cause degeneration and collapse of my upper trachea, which still has some structural integrity.]

Any improvements to my breathing that I will see on biologic therapy will likely take *months,* not weeks. But I need to continue to survive (pay rent & bills, continue my medical treatment) in the meantime, which is why I am trying to raise funds.

Other Ways You Can Help

If you are unable to use GoFundMe, I can also accept donations via PayPal (https://paypal.me/TCD212), Ko-fi , or Canadian e-transfer.

Given the current state of my health, I am unable to go buy groceries, do laundry, errands, etc., so gift cards to the following services would also be a huge help:

Foodie Fit (healthy prepared meals; Canada): https://www.foodiefit.ca/product/gift-card/

Instacart (groceries; Canada): https://instacartca.launchgiftcards.com/

UberEats (food delivery; Canada): https://about.ubereats.com/ca/en/how-it-works/uber-eats-gift-card/

WeDoLaundry (laundry; Canada): https://www.wedolaundry.ca/gift-cards

Amazon.ca (need to edit/select gift card options): https://www.amazon.ca/dp/B07TRWGYDH/ref=s9_acss_bw_cg_gclptcg_1a1_w?pf_rd_m=A1IM4EOPHS76S7&pf_rd_s=merchandised-search-4&pf_rd_r=DJZ104VG16MPEFX69RKH&pf_rd_t=101&pf_rd_p=7f22cc0d-5bc0-4b5d-a27d-414894e624ac&pf_rd_i=9230166011

If you prefer to support local businesses, this local grocery delivery is allergen-friendly (for me) and also has pre-prepared food from local restaurants:

Legends Haul Grocery: https://shop.legendshaul.com/legends-haul-giftcard.html

Money goes further on groceries and prepared meals than restaurant food delivery, but I also have food delivery accounts with:

SkipTheDishes (make sure flag = Canada): https://www.skipthedishes.com/gift-cards/purchase

DoorDash (Canada): https://doordashca.launchgiftcards.com/

If you prefer to avoid non-US currency, I still buy Kindle e-books and audiobooks from US Amazon.com:

Amazon.com (need to edit/select gift card options): https://www.amazon.com/Amazon-1_US_Email-eGift-Card/dp/B004LLIKVU/ref=mp_s_a_1_3?dchild=1&keywords=gift+card&qid=1623624723&sr=8-3

Gift cards can be sent to tdennehy [dot] bc [at] gmail (complete the domain & swap in the “.” and “@” to email). I do not have the cognitive bandwidth to respond to individual emails at this time but I am truly grateful for any help.

Non-Monetary Assistance:

If you have the ability/power to help me stay in Canada, I would greatly appreciate any assistance.

Thank you. Truly.