First Darzalex Infusionby Angie
17 Nov 2024
8:11 pm0
Yesterday, we spent five hours at the Stanford Infusion Center so I could receive my first Darzalex Faspro infusion. It is a targeted monoclonal antibody that they hope will manipulate my bone marrow to eliminate some of the problematic antibodies that make it hard for me to get a transplant match…I think. There was a lot of information to process. This is just a few steps past experimental for someone with my condition; it’s usually used for patients with multiple myeloma.
It’s actually a slow-push subcutaneous injection, meaning they put a sort of mini IV into my little belly folds and push the medicine slowly over about 5 minutes. Then I have to stay in the room to be observed; this first time they required 4 hours of observation, but I’ll be doing this every week and the future appointments will only need one hour of observation.
There are a lot of possible allergic reactions and side effects, both from the Darzalex itself and from the pre- and post-treatment medicines they have to give me, but luckily things went really well and we’re pretty confident that we can move forward with this. Really well with regards to how I tolerated the treatment; we won’t know for another month or more if it will make a difference for me. If it improves my chances of getting a match even a little, it should be worth it.
Transplant List Activated ✅by Angie
26 Oct 2024
1:10 pm4
Yesterday, it became official: I am now active on the organ list for a heart+liver transplant.
We just spent three weeks in Hawaii visiting the Carlsons. It was truly magical to have so much mental and emotional time to feel normal – three weeks in which all this transplant stuff just disappeared. It felt like living in a dream. But reality set in the day we arrived home when the transplant coordinator called to notify me that the cardiac team had just met and submitted their approval. That was last Friday; the liver team met on Wednesday with the same result. On Thursday, Jim and I both met with Dr. Lui (my cardiologist and main doctor in all this). It was an unexpectedly emotional conversation. I am so grateful to have Dr. Lui and all the amazing people at Stanford helping me through this process.
It’s unlikely that anything will change anytime soon. I technically have to be ready to take the call at any time, but I am going to be very, very difficult to match. There are some antibody-cancelling therapies they plan to try that may help a little. Still, we’re looking at months or even years waiting on the list, rather than weeks.
Sorry I haven’t kept up with posting the nitty gritty details of appointments and tests it has taken to get here, but there was just too much. Next up is multiple rounds of additional vaccines that I need to fortify my immune system response to disease before they give me a bunch of stuff to inhibit my immune response to foreign tissue.
Thank you for following along in this difficult journey ahead of us. We appreciate your continued support and love. As usual, we’ll continue posting here to keep you all informed as things develop.
A Day of Training & Testingby Angie
4 Sep 2024
4:09 pm1
Today was a long day at Stanford. Jim took off work to join me for trainings with the Clara (cardiac transplant coordinator), Tiffany (a transplant social worker), and Christina (a pre-transplant dietician). Everyone has been super kind and considerate. Last time we did this, I felt like I was at the bottom of a waterfall; this time around, I felt almost like I was interviewing for a job. They need to know that we are (as Clara charmingly put it:) “In it to win it” – meaning that we are emotionally and mentally prepared and are willing to be compliant in the recovery process and beyond. They also want us to know and accept the worst-case scenarios before going in. Since we did the evaluation five years ago, a lot of the information was already familiar, but there were a few surprises. My family will balk, but I was crestfallen to learn that post-transplant I will have to give up raw sushi – and Jim was even wearing his sushi socks today! Good thing I also love tempura rolls.
I took a “Frailty Test,” which sounds a lot fancier than it actually was. They checked my grip strength (26kg thank-you-very-much) and balance and tolerance of quickly standing and sitting over and over again. Then we went to the phlebotomy lab and had a whole bunch of blood drawn. I’m glad I was already done with the frailty test, because I felt a little woozy after that. But then we got some amazing Greek food that perked me right up.
The last several weeks have been full of paperwork, as well as routine care appointments to be sure I’m overall as healthy as possible: PCP physical, dental checkup, eye exam, mammogram, women’s health stuff, PFTs (perfusion tests to check out my lungs), ultrasound of my extremities, hep-b vaccine, abdominal CT scan…etc. Now we’re focusing on transplant-specific stuff. Last week, I met with my hepatologist and also one of the liver transplant surgeons; tomorrow, I meet with the cardiac transplant surgeon. This Friday I’m going to Lucile Packard (the children’s side of Stanford) for a pre-op before my catheterization there on September 16th.
Transplant Coordinatorsby Angie
6 Aug 2024
3:08 pm1
Transplant – especially a dual-organ transplant – requires coordination between over a dozen different specialists and departments. Good programs have coordinators that work with the patient to keep the whole process on track. Last week I had a long chat with Claire, my Cardiac Transplant Coordinator. We talked through what I can expect appointments-wise over the next few months. She referred me to Jess, the Cardiac Transplant Scheduler, to actually get everything on the books.
Today I had a delightful conversation with Heather, my designated Transplant Coordinator with Cigna, my health insurance. Honestly, I’ve been putting off returning her calls for almost two weeks because my past experience with insurance-assigned health coordinators, nurses, and advocates has been quite disappointing: I consistently know more than they do about my health issues, but they just plow through their set scripts anyway. I thought this would be one more unhelpful person trying to be helpful. I’m happy I was wrong. Heather called to talk me through my insurance coverage for this huge undertaking, and how it will evolve through the four “zones” of transplant: Evaluation (where I am now), on the list, in the hospital, and post-discharge recovery (Cigna has fancier names for them, but that’s the gist). She also talked through some of the resources and support programs that Cigna can offer if we struggle to meet the financial demands of transplant at any point along the road. In addition to lots of good information, she also asked very sensible questions and listened to my answers – so refreshing!
In the Operating Roomby Jim
1 May 2024
6:05 am2
I just got a text saying Angie has entered the operating room. I was with her just a couple minutes ago while she was in pre-op. She’s in good spirits and ready for her procedure, which should be relatively quick.
They’re doing a transjugular liver biopsy to get some important readings. Normally, they’d do the biopsy by just going in from the outside (rather than through her neck), but her cardiologist wants them to do it transjugular so they can get some extra readings from insider her circulatory system. It’s more complicated and takes a little longer, but they want the extra data.
It’s been about 6 years since her last biopsy and they want to see how her liver is doing. The results of this biopsy might change our long-term plans quite a bit. Dr. Lui feels that if Angie’s liver is doing well enough, it’s possible that he will want her to get a regular heart transplant instead of the heart-liver double transplant we’ve been talking about for the last few years. There are several benefits to this plan. First of all, transplanting a single organ is just simpler. Recovery is easier, risk is lower, surgery is shorter, finding a donor organ is easier, etc. Angie’s been on a medication for the last 5 years that can become harmful to her body if she takes it too long, and there isn’t really another medication that will work for her, so we’re up against the clock. If we switch plans to a regular heart transplant, one reason may be to move up the timetables and get the surgery sooner so Angie won’t have to take that medication any longer. And by sooner, that’s relative. Nothing would probably happen for at least 6 months. But once we’re on the list, it could be weeks or years before we get her a new heart.
So, the procedure today is relatively simple and safe, but the results of it (which probably won’t come for a few weeks) may be very important.
Thanks for reading!
Sheltering In Placeby Angie
22 Mar 2020
3:03 pm1
I mentioned in last week’s post that there we had a rental property on the table: We spent last weekend laboring over the decision. We finally decided to go for it, so first thing Monday morning we asked Sarah, the property manager, to email us a copy of the lease so we could read it before going to her office to sign it that afternoon. She did send it; then emailed us again to ask us if, for the sake of “social distancing” (which was just a recommendation at that point), we would be willing to e-sign the papers. We agreed, then emailed her back about some typos. After a second round of corrections, we were working through e-signing the dozens of lines in the lease agreement when we got a text from Jon sharing the first news posts about the official “shelter in place” order that would go into effect at midnight.
I called Sarah immediately and we talked through the ramifications: We could e-sign the papers, but we would not be able to meet the property owner and get the keys later that week as agreed, nor could we move in until the order was lifted. Would we have to start paying rent on a house we couldn’t live in, or would the homeowner have to take the hit of having no renters for several weeks? If they asked for the former, should we just decline that property after all? In the end, they were kind enough to agree to put the whole process on hold. We didn’t sign the papers, but they promised that when the order is lifted we will be first in line for the house. What a relief!
Monday night was our remote PDX FHE lesson with some of our dear friends from Portland. Since moving away, we’ve been video conferencing in each month while all the Portland locals meet together at someone’s home, but this time the entire group was on Zoom. It feels good to stay in touch with far-away friends. To that end, we also had virtual Sunday School last week with one of our Portland friends, and today my mom joined us in doing it again.
Otherwise, each day has been much like the last. Monday evening, Jon had to stay late at work, getting the necessary technology in place to work remotely; so starting Tuesday morning our whole household has been working from home. We’ve also cleaned, organized, done laundry, and taken inventory. We’ve done texting, phone calls, and letter writing. We’ve spent time playing games and watching movies together. Not much is practically different, but it feels different. There’s a sense of anxious waiting, of holding back, of trying to make the best of a situation we can’t control.
It’s strange to compare this experience to our situation six years ago: In February and March of 2014, Jim and I were living in Georgia, spending time with Kathy in the final days of her life. Jim worked remotely from his parents’ home and we didn’t go out much, cherishing the time together. It was another period of physical and emotional separation from “normal life.” It prompted us to examine our priorities, make sacrifices, innovate our routines, explore new ways to connect, and foster compassion; all actions that Kathy exemplified throughout her life. And this coming week marks the anniversary of her death as well as the anniversary of her birth.
Every Spring I think of her as Easter approaches; as we prepare to celebrate the eternal life we are promised through Jesus Christ and His Atonement. But she is on my mind even more powerfully this year, with so many people experiencing unanticipated challenges and suffering due to COVID-19 and all its ramifications. These experiences have illuminated our place in a global community. It is another time of bittersweet seclusion and connection; another opportunity for change and growth. My heart aches for all those who have felt and will feel the loss of loved ones as we did at Kathy’s death. But I know that she would encourage us to hope in our Heavenly Father’s eternal plan for all His children throughout the world.
A Homey Monthby Angie
15 Mar 2020
9:03 pm1
It’s been over a month since I was discharged from the hospital, and quite a strange month it has been. I’ve had a few follow-up appointments at Stanford and, aside from a few little blips of arrhythmia, I seem to be holding pretty steady on this new medication. I’m still not supposed to exercise or exert myself, but otherwise I’m allowed to go about my regular activities, mostly at home. The fatigue lingered for several weeks, but now I feel much more normal.
But while I’ve been getting better, we’ve been watching the world get sicker. As the COVID-19 Coronavirus has spread, many of the Bay Area tech companies were among the first to excuse their employees from working at the office. Both Brittany (at AirBnb) and Jim (at Workday) are working from home at least through the end of the month. Jaquie is delighted that she gets to sit in Jim’s lap for hours on end while he works at his computer, and I enjoy having Jim home too. But it’s not hard to remember that what may feel like a treat for us has been a frustrating–if not devastating–period for many others.
The one thing that has gotten us out of the house most is that we’re looking for our own place to live. We’ve spent the last six weeks searching listings online daily and taking a couple of trips down to Fremont each week to see properties (rentals; we’re not looking to buy yet). Twice we’ve seen homes we’ve loved but weren’t fast enough to secure them. It’s very hard to be an over-deliberate personality in the current lightning rental market. We don’t really get to choose between multiple properties at once – just, “Is this one it? Yes or no? Is there something better coming up? There’s no way to know.” We have one on the table right now that’s very promising, but we have to decide by tomorrow at 1pm. Big decisions are emotionally exhausting!
It’s even harder to jump at any property when we’re so happy right where we are. It’s been amazing living with Jon & Brittany for the last year – we’ve loved it. It’s very hard to leave, but we promised ourselves that this was a temporary blessing and have always known that we wouldn’t stay too long. We want to be nearer to Jim’s work and we need to be nearer to Stanford. So, it’s time to move again for the third time in four years. Please wish us luck!