Super Thankful Thursday

Meri’s Thankful Thursday:

1. chocolate turkeys from T&J (and the inspirational card)
2. Peanut butter M&Ms
3. My fantastic home health team: RN, OT, PT, & Aide
4. E-books from the library (no germs!)
5. that I’ve been oxygen-free for more than a month
6. the best friends a girl could ask for
7. that I had as much time with my dad as I did (though I would’ve loved more)
8. for all the people who comment on my blog
9. that my Aide taught me the trick to getting the compression stockings on (here’s to hoping the swelling in my feet and ankles will go away soon!)
10. that I have Scott and Estee just a phone call away every day…and that my nephew and nieces get on the phone and actively talk to me (maybe Sheva will learn soon not to accidently hang up on me when its her turn)
11. all the people who continue to pray for me, as I continue on my road to recovery
12. Mom, who does so much for me…especially scrubbing all the fruits and veggies so that I can eat them (post-transplant food rules)
13. Terry & Rick and Rivky, who show me that their are ups and downs post-transplant but we can survive them and flourish
14. and most obviously, I’m thankful for my donor, without whom I wouldn’t be here today

please comment and tell us what you’re thankful for today!

 

Superbetter

In going through a pile of magazines that had accumulated while I was in the hospital, I came across an old issue of Psychology Today from October 2015 and read the perfect article (applicable for many). In this article the author, Jane McGonigal, PhD, talks about  her program called superbetter, where she likens dealing with illness or life challenges to playing a video game. In her example, she reminds us that in any good video game you have the opportunity for power-ups that help give you extra strength to get you through whatever challenge lies ahead (picture the power pellets in Pacman that make him invincible to ghosts). In life we have the opportunity to look for Power Ups too: what things make you happier, stronger, healthier, or better? Identify those for yourself and know that you can use them for power-ups when things get tough.The author also points out that in any game, there’s typically a nemesis: what are the things that are blocking you: what things are preventing you from being the best you or the healthy you? If you want to get superbetter you can’t hide from the bad guys; you identify them and address them. Sometimes you play a multiplayer game and you identify allies who can help you progress through the game. Who in life helps push you forward?

The idea of superbetter really resonated with me because I like that idea of identifying what my power-ups are, what are the things that set me back, and who are the people that help push me forward and support me. I felt like this is relevant to so many of us not just people who are going through Illness but anyone going through a rough time. So I thought I’d share it with you in hopes that any of you are going through anything difficult can use this model and see if it can help get you through it. You can read more about it in the New Yorker online. Plus, although I haven’t tried it yet, it has also been turned into an app where you can actually track your real life play of the game, listing your quests, keeping tack of power-ups, etc.

And now, Thankful Thursday:

Meri

1. That Linda lent me the book The Samurai’s Garden. I enjoyed it much more than I thought I would.
2. Susan’s beautifully crocheted arm sleeves
3. That mom drove me to the store so I could already get my nieces and nephew their Chanukah presents. Done!
4. Lay’s Dill Pickle flavored potato chips

Sandy

1. thankful for finding a dentist here in Pittsburgh
2. thankful for having Mer back in the apartment with me
3. thankful for eating my own cooking

This week…

It’s been another crazy week full of appointments. I got some bronchoscopy results from last week and I can happily report that I did not grow any bacteria that should not be there. That’s a good sign and it means that I don’t have any infection in my lungs. Unfortunately, it did show some signs of rejection and they tell me but that’s normal; apparently at the beginning, you’re more likely to show signs of rejection because your body is adjusting to the new lungs and it’s recognizing that it is a foreign body. The treatment for rejection is to go for 3 days of IV steroids and I did that on Tuesday, Wednesday, and Thursday (today) and that will be followed by a tapered dose of steroids in pill form for the next 10 days. Then a week after I finish the tapered dose I’ll go for another bronchoscopy to see if the rejection has lessened. I’ve been going for the IV steroids back at UPMC, and come home to things like OT and PT. Today I came home to my home infusion of gamma globulin which helps protect my immune system by giving me antibodies to fight infection should I be exposed to any.

 

On Wednesdays I fill my pill box for the week and I take a gazillion pills to start with; adding in the extra pills for my taper of steroids was crazy (the first day it’s 10 pills and the next day 9 and so on). One of the hardest things is getting used to all the pills.

Earlier this week I had the opportunity to speak with my doctor from back home, Dr. David Wertheim (my allergist / immunologist). Since I’ve gotten sick and haven’t really been seeing him (I started seeing a critical care doc/pulmonologist instead and then I moved to Pittsburgh), he generally calls around Rosh Hashanah time to wish me a happy New Year but I was in the hospital this year and we didn’t get a chance to talk then. He’s such an amazing doctor (sees pediatric and adult patients) and the fact that he still checks on me after 3 years, goes to show what an amazing person he is (highly recommend; he’s in Lake Success, NY and affiliated with LIJ). I’ve been very lucky with my medical team both in New York and here in Pittsburgh and I’m thankful for that.

1. Here’s a few more things I’m thankful for on this Thankful Thursday:

Meri:

1. That my state senator and my congresswoman got reelected
2. That when I need to take a break during OT or PT it isn’t because I can’t breathe (my breathing is great and so is my heart rate); breaks are sometimes needed simply because I’m still rebuilding my muscles that I lost from mostly lying in a bed for 10 months.
3. That my cousin Lauren sent me the most awesome (totally me) visual food pun artwork
4. That my cousin Jackie (who is about to get married, and whose wedding Mom and I will unfortunately be missing) took the time to email back and alleviate some food concerns I had (it’s good to have a dietician in the family)

Sandy:

1. Thankful that today is the last day of having to take Mer to the hospital  (outpatient) so that she can get her IV anti-rejection meds
2. That the sun is shining brightly
3. For the beauty of the autumn leaves
4. Rabbi Heimer

Time to talk about organ donation

I’ve had been having a hard past couple days. In addition to feeling under the weather, I found out that someone I cared for deeply passed away.

As for feeling under the weather, I spoke to one of the coordinators who told me that my symptoms are normal and are potential side effects of the medication I’m on (super not fun). As for my friend, I can only attribute his death to the fact there aren’t enough organ donors and people have to get really sick before they qualify and sometimes they’re just too sick to last long enough to get their organ donation.

Which leads to a very timely topic: This weekend (traditionally in November two weeks before Thanksgiving) is celebrated as National Donor Sabbath. National Donor Sabbath is a time when leaders of all faiths and denominations are asked to bring attention to the gift of organ donation. If your place of worship doesn’t already have something scheduled, ask your clergy to address the topic. During this 3-day weekend (Friday, Saturday, and Sunday) you, can make a real difference for the more than 123,000+ people waiting for transplants. And, to be honest, if doesn’t happen THIS weekend, that’s okay, just make sure it happens.

I almost didn’t make it. Too many of my friends haven’t made it. Until I was placed in this situation, I didn’t really give organ donation much thought; But now it’s hard to think of anything else. I don’t understand why more people aren’t willing to save lives in their deaths. It is only through the generosity of my donor that I am still here; that my donor’s family during their worst suffering, thought to help a complete stranger. If you needed an organ transplant would you want someone to give it to you so that you could live? If you answered yes, then why not do the same for someone else?
You can become a donor by signing the back of your driver’s license or by contacting the local state donor organization. Both your local organization and the national Donate Life organization can give you more information about the process and about becoming a donor. And if you are Jewish, you can also contact the Halachic Organ Donor Society (HODS) for more information how to register yourself as a Halachic (according to Jewish law) donor.

My First Week Home

So I’ve been home for one week and it’s been a very busy one at that. On Friday of last week I went to Surgery Clinic and had the last of my sutures taken out. My surgeon even told me he was finished with me and from now on surgery was not taking the lead with my care and it was reverting back to my pulmonologist. I was very pleased when he asked to take a picture with him on his phone, so of course I took one on mine. This is a picture of Dr. Shigemura, my surgeon. After I came home my OT Marlene came for the first time and it turns out that she did a bikur cholim (visiting the sick) and visited me when I was in CTICU when Mom and Scott were in New York for Dovid’s Bar Mitzvah.

On Sunday the weekend physical therapist came and did an assessment and let me know that a regular physical therapist would be assigned to my case. Monday, my nurse Melinda came to the apartment to draw blood. Afterwards, we headed back to the hospital for a pulmonary function test (PFT), a chest x-ray, and an appointment with my pulmonologist, Dr. McDyer. I took a picture with him too so that you can see who he is. Prior to going into the hospital my lung function (FEV1) as measured by the PFT was at 12% and now, as of Monday, my lung function was at 77%. Dr. McDyer explained that my lungs will not be at full functioning for six to nine months and he was surprised that I got as high as 77% and told me I should frame the paperwork that said that; apparently I’m a superstar. It made me feel really good to hear that.

Tuesday I had both OT and PT, one in the morning one in the afternoon, and was exhausted by the time that was finished. Wednesday was my first day without any appointments and we purposely arranged it that way because the building was having work done right outside by Duquesne Light and we were informed that part of the day we may not have electricity or water. Mom and I decided that meant it was a good day to get out of the apartment and do some errands and go shopping. That wore me out just as much as the OT and PT.

Thursday we have to go back to the hospital for a bronchoscopy. That’s when they knock me out and stick a tube down my throat and take samples from the lungs to see that I’m not growing anything I shouldn’t and I’m not rejecting the lungs. (I won’t have the results until next week.) I will likely be out most of the day due to the anesthesia and didn’t want to forget about posting our weekly update and our Thankful Thursdays. So I decided if I posted pretty close to midnight I could still be considered appropriate for Thursday. For those of you that read this before 7:30 a.m. (which is as of now my approximated time of the procedure), please feel free to daven and keep me in mind that all should go well during the procedure. For those of you reading it afterwards, still keep me in your prayers that I get positive results back and that’s all is good.

So here’s our slightly early Thankful Thursdays:

Meri :

1. That Chavi had a very happy birthday this week (she turned 11 on Tuesday)
2. That Dovid’s hockey team won their first game and he had two assists.
3. That I have a great team of medical professionals helping me as well as a mother who does everything in her power to help me when the home medical team is not here

Sandy:

1. That Mer is progressing so nicely in only a week back at the apartment
2. That the OT, PT, and nurse are so pleasant and are here to help Mer in her recuperation