Saturday, July 17, 2021

Celebration of Life Details

Cara has created a Facebook event with some details about Lori's Celebration of Life on Sunday, August 15. Here is the text from the event posting:

SUNDAY, AUGUST 15, 2021 AT 2 PM CDT – 9 PM CDT

Celebration of life for Lori Ahrenhoerster

Greenfield Park Picnic Area 5 (enter park at intersection of 116th and Rogers)
Duration: 7 hr
Public Anyone on or off Facebook
Please join us in celebrating the life and legacy of Lori Ahrenhoerster. In accordance with her wishes, there will be good food, great music, and wonderful people coming together to celebrate Lori, and the amazing community she helped to shape. Feel free to bring a bike, your knitting, or a written memory or photo to add to a scrapbook we are making.
Feel free to stop by anytime, and stay for as long as you wish. The final hour will be reserved for a dance party at Lori's request. Please share the event details with anyone who would want to join in

As the post says, feel free to share this information with anyone who might be interested.

Wednesday, October 28, 2020

Thank you, and some thoughts about Lori

First off, I want to thank everyone for all of the kind words you have written about Lori on Facebook and/or said to me and the kids. It means a lot to us to know that other people loved and admired her as much as we did. Further thanks to the many of you who attend her drive-through visitation last Saturday. We are so glad you could share that day with us, despite the pandemic.

An obituary for Lori has been posted here. Feel free to share it with whomever you think might be interested.


I'm going to get a bit reflective (and probably wordy) below, so if that's not your cup of tea, no offense taken.  Just click over to the obituary. No need to sift through my ramblings.

 

Wednesday, October 21, 2020

Visitation/Memorial Information

As I am sure you are well aware, Public Health Superhero Lori Ahrenhoerster would not tolerate a large gathering of people during Covid times, and there could never be a Celebration of Lori's Life with out lots of hugs (and food!).  The kids and I will plan such a celebration of her life to take place when it can be done so safely, hopefully next summer.

In the interim, we know that many people will want to express their condolences (and make sure our kids are told repeatedly how awesome their mother was), so we are going to hold a drive-thru visitation line this weekend for anyone who would like to attend.

Here are the details:

When: Saturday, October 24. Come anytime between 12:00-3:00

Where: UWM at Waukesha parking lots 1 and 2. 1500 N University Drive, Waukesha WI. (Please enter on University Drive from the north, so you can make a right turn into Lot 2.)

What: A chance to express your condolences to the family, for all who would like to. We will be asking you to stay in your cars and wear a mask when talking to the family through the car window. Sorry, no hugs at this time (those can wait until next summer). 

Apologies for the short notice.

Lori identified three charities that she would love for donations in her name to be made to:

Metavivor

Team Pheonix

UWM Zilber School of Public Health

So Long, and Thanks for All the Love

 Hi, All. This is Greg again.

I will write a more detailed post in a few days, but for now I just wanted you all to know that Lori passed away this morning (Wednesday, October 21). The two days she spent in hospice were everything she wanted. She spent the days with me and the kids, and she was able to talk and laugh with us. She was smart and charming and loving and funny to the end.

The nurses did a great job of managing her pain and anxiety, and she died peacefully.

She was aware of all of the love and the kind, supportive thoughts you were all sending her way. She was sad that she didn't have the ability to respond to each one of you, but please know that some of her last thoughts were about how wonderful you all are.

My family and I need some time just to ourselves for the next few days, but I will post more here when I can.  Many thanks to those of you who have reached out to me and the kids offering your support.

Sunday, October 18, 2020

The TRALI Problem

Hi, Friends of Lori; this is Greg. 

Lori has requested that I write a quick update. It will lack the usual scientific clarity of Lori's posts, but she wanted to make sure people were updated on what's going on.

On Friday (10/16) Lori started having trouble breathing. This is likely due to either the fungal infection being in her lungs or a condition called TRALI (a bad reaction to the granulocyte transfusion). They moved her to ICU Friday night so they could keep a closer eye on her. 

Unfortunately, they had to give her a COVID test to rule it out (even though no one actually thought she had COVID). This ended up giving her a bad nose bleed, which, given her low platelet count, took a very long time to get under control. Her first night in ICU was spent dealing with that, along with her breathing issues. (For the record, the COVID test was negative.)

She was being given oxygen with a mask and was doing ok with it when she was awake and sitting up, but when she would fall asleep, her breathing would get rapid and her pulse ox would drop under 90. Saturday during the day she felt ok.

Saturday night was a rough night. She didn't sleep well and got panicky. It was hard to keep her pulse ox above 90. Sunday morning she was pretty miserable: exhausted and hungry.  They switched her from a regular oxygen mask to a BiPAP machine, which is similar to those CPAP machines they use for sleep apnea, except the air pressure goes both ways, so it really helps you breathe better. (Apologies to people I was messaging Sunday morning for incorrectly saying they were using a CPAP machine.) They also gave her some meds to help her stay calm and relaxed

The BiPAP worked very well in helping her sleep. She was able to sleep through most of Sunday. And has also been able to eat and drink a little.

We had a serious discussion with her doctor this morning. The longer this goes on without showing improvement, the less likely it is to be reversible. If it doesn't start showing improvement in the next day or so, we will transition her to comfort care/hospice.

I will try to keep you all updated through this blog, since this is where most of you look for information on Lori's condition (we aren't going to set up a Caring Bridge site, as a few people have asked about, since this is already here).

Cara was able to come home from grad school and I am able to go on FMLA starting tomorrow, so we are all together and we are ok (thanks to the many of you who have asked if we needed anything).  If Lori is moved to hospice care, we will all be able to visit her at once, which will make Lori happy. In a perfect non-COVID world, she would want to be surrounded by all of her friends as well, but we will be limited to immediate family. Please know that she feels your love and sends it right back to you all.

Thursday, October 15, 2020

Four out of five granulocytes transfusions completed

 First off, thanks to all of you who reached out over the last few days, but I didn't reply to at all. I was barely able to look at my phone much of the time (but I'll get to that), but I read them all in bits.

Today during my MRI (I'll get to that, too), I tried to get through it by writing my next blog post in my head. And then I got back to my room and was visiting by the doctor on rounds this week (Dr. Michaelis), who is wonderful, but told me something. She told me that she knew that all of this stuff with the granulocytes was extremely stressful and that it hits at the core of our "fight or flight" response. But she needed me to stop obsessing (that's not what she said) about everything about this treatment--counting and self-rationing meds, worrying about fevers, etc. And she said that I should trust that my team is on top of things and they will let me know when they need my input. She also said that I am, despite these big set-backs, a very healthy person (my heart, lungs, kidney function, etc.) and that the granulocyte transfusions seem to be working. I should trust in the process. Also, I should use the meds that are available to me and not suffer.

So with that being said, I'll work back to my difficult couple of days. First of all, it was finalized that I would receive a total of five granulocyte transfusions. The first two (Friday, Monday) came from one donor, and the other three (Wednesday, Thursday, Friday) will be from a different donor. Each has had an expected arrive time, and they've all been wrong. :) It just makes it a little hard to plan things like other IV meds when they're expected at 3:00 but don't arrive till 5:30.


I described in detail the Friday infusion. The others (so far) have not been that intense, but have been more "classic" granulocyte transfusion reactions. For me, that means high fevers and rigors. I've gotten enough pre-meds (after the first two times, they added a steroid) that the actual infusion goes fine. But afterwards it's a mess of fever-med-fever-med cycling. Every day we learn a little more and are better able to deal with it, but it has left me with days where I'm either feverish and really uncomfortable, waiting for the next dose of meds, or I'm doped up because I just took meds. So I've been out of contact quite a bit of that time. I will probably be mostly out of contact the next few days, too, as this all works through my body. But I am hopeful that it is working, and grateful for the medications that allow me to handle it all.

Last bit on the MRI: I woke up Saturday with a very sensitive spot on my left ankle where it meets my foot. It hurt to even wear socks! I mentioned it on rounds, and it came up again the next day. So to "rule out that the fusarium has impacted the bone," I got an x-ray of that ankle. It didn't show anything definite, and had some comments about possible previous trauma (I'd sprained it before), but I wasn't worried. Then yesterday the who thing was again sensitive, but the area was reddish and warm to the touch. Thus the MRI. I don't have results from that yet.Essentially I'm just hanging in here, taking it one day at a time. I'm trying really hard to relax and just get through. I've been using some meditation and some essential oils. And I'm also really happy that tomorrow is my last one of these. :)



Saturday, October 10, 2020

One granulocyte infusion done!

Whew...

I was told earlier in the day that my donated granulocytes would be infused about 8:00 pm on Friday. Visiting hours end at 8:00 pm, but I was worried about how this might go so I asked Greg to stay, at least for the first fifteen minutes. Luckily our nurse was willing to ignore that he was in the room.

I needed to receive Benadryl and Tylenol before the transfusion to minimize a reaction to receiving blood products from someone who is not me. Granulocytes are much more likely to cause a reaction than either platelets or red blood cells, and I already had one reaction to platelets, so that made sense. My nurse said she preferred to wait for the product to be on the floor before giving me my pre-meds, because blood products are often late. In addition, granulocytes have the shortest life after being harvested of any of the blood products, so I knew we had to get them in ASAP. The infusion instructions said to infuse over 2-4 hours. The slower the infusion, the lesser chance of reaction, but of course the longer time of the cells not in my body working, but potentially dying in the bag. I negotiated with my nurse and we agreed on a three hour infusion.

They weren't here at 7:30. Or 8:00. My nurse was calling over and over to see when they'd arrive. They had to be couriered from the donation site (not sure where) and then irradiated at the Froedtert Versiti, and then they'd be delivered to the floor. My nurse was also worried about time and discussed with Versiti that when they arrived on the Froedtert/MCW campus, they'd call her and she'd start the pre-meds. 

I was getting more and more nervous and worried about this life-saving donation being completely useless if it was too late. We waited. Finally about 9:15 (Greg was still here), my nurse heard from Versiti that they had the donation and were treating it. I got pre-medicated. But the donation didn't arrive in half an hour. My nurse checked and said half an hour before transfusion is the minimum, so I'd still be okay. We waited. Greg and I were both falling asleep. And they they arrived at about 11:00. Unfortunately they expired at 1:10 am, so they had to be infused over the shortest time (two hours).



Greg waited and the nurse stayed in my room for fifteen minutes to monitor my vitals and make sure I didn't have any classic reactions. I didn't feel anything. I was just tired. The fifteen minutes were up, and  Greg and my nurse both left. I settled in to do some visualization of the cells traveling to each of my fungal spots and working their magic. (By the way, if you haven't watched Cells At Work, it's all really good, but the neutrophil animations are especially accurate and relevant--just know that I was given a TON of neutrophils so it was even more chaos.)

Not even fifteen minutes after the nurse and Greg left, my nose started running like a faucet. Then I was sneezing like crazy. At the same time, the stye in my left eye was throbbing and swelling so much that I couldn't open my left eye. As that continued (I had to find another box of Puffs Plus), the entire front of my face was hurting. My upper teeth ached so bad that I had to remove my night mouth guard. Still more sneezing and nose pouring out stuff. My nurse checked on me and asked if there was anything she could do for me. I didn't know what that would even be, and I certainly didn't want to stop the infusion (or even pause it, since we had no wiggle room on the expiration time). I told her I wasn't having trouble breathing or itching or any other typical reaction. I wondered if it was really the neutrophils working that quickly.

Neutrophils are the most abundant white blood cell (in healthy people). Unlike the branch of the immune system that has memory to prior exposures and makes specific antibodies to remember specific exposures (thus the science behind an immunization--which takes awhile to take effect), the granulocytes (neutrophils, basophils, eosinophils) are the immediate response. They are non-specific, so if something that is foreign enters, they hit it right away. When I had mucositis following my stem cell transplant, I only needed a few thousand neutrophils to show up before I started feeling better. In fact, I felt better even before they were measurable in my blood. But remember this transfusion was loaded with neutrophils.

So they flooded every part of my body that had something foreign present. Thus the sinuses (I'm assuming that there was/is fungus in there), my eye stye, maybe the random bacteria in my gums since I haven't had my teeth cleaned in so long? And my fungal skin lesions. Every single one of them started to throb. I'd been told I had four spots on my back, but couldn't see them. I felt them. I felt it in my biopsy site, where my first spot appeared, on my upper lip, and several on the soles of my feet. It was excruciating! I tried to visualize over the pain. I felt that this HAD to mean that this treatment was working and doing exactly what it should. I made it through the two hour infusion. But the pain didn't go away. In fact, about an hour after the infusion completed, it got worse. (My Tylenol had worn off). I couldn't open my eyes (throbbing stye plus photosensitivity) but actually asked the nurse for help with my pain. I didn't think I could take Tylenol again, and so she suggested oxycodone. I hate opioids with a passion, but I remembered how they helped me get through four miserable nights with mucositis and that I didn't get addicted. I agreed. But the doctors on call wanted to use Tylenol instead. Finally, after not napping all day Friday, and staying up through the infusion and aftermath, sometime between 3:00 and 4:00 am, I fell asleep.

When I woke up this morning the throbbing in my sinuses, eye and teeth was gone. As soon as the morning Tylenol wore off, the pain in the fungal skin spots returned, in addition to "flu-like symptoms" including chills and body aches. I needed more sleep. I took more Tylenol and slept more. When I was due for my next Tylenol dose, it had to be delayed due to taking Tylenol before the anti-fungal. So I hung out in fetal position and made it through. I am happy that the Tylenol seems to be doing the trick.

But how amazingly cool is this all? To actually FEEL the attack of the neutrophils all over my body? I talked to Dr. Swanson about it to make sure I wasn't over-simplifying things and she said it made sense. Furthermore, she examined my spots and showed me the proof. The flat marks now had true heads, filled with pus, which is the dead neutrophils after their work is done.

I am in awe--again of my donor who must have been at Versiti much longer than they'd expected, and will be in the future. But I'm also just blown away by the human body and how, when it works, it works!

I don't think this has taken care of everything, but it's made a good start. And I have to say that I'm also really very happy that I don't have to do it again tonight already. I'm hoping for a few good night's sleep and maybe decreasing pain without medication. And then I'll be ready to do it all over again on Monday (and Tuesday and Thursday, apparently). Thank you, amazing donor!