Relfections on risks and health costs, post Transplant Games 7/26/08
Dear Friends,
Many of you have been reading this blog for a whole year, and I thank you for your loyal support. Happy One Year of this blog. How great we have just positive life to report.
I am writing from Stanford Hospital. On Tuesday I started feeling a mild cold coming on, which was full blown by Wednesday. As usual I went to clinic and got my nose swabbed. It turned out to be parainfluenza, the summer version of RSV, the virus that put me inpatient in Jan/Feb. So I have to be here for 5 days for 1500mg of solumedrol and ribavirin inhalation. I am so annoyed! But grateful it is something treatable, they know what to do, and this is just to prevent rejection. Small price to pay; it really is just a minor inconvenience… I hope to be well and infection -free by the CFRI conference and retreat next weekend.
When I told people I have a cold I’ve received comments like, “With all your running around I knew there would be some health issues coming up,” or “that’s the Stenzel way, crash and burn.” I have to confess I resent these comments. I don’t want to be blamed for picking up a cold. I sometimes blame myself enough, and don’t need it from others. Yes, I ran around in Pittsburgh, yes, I pushed my limit for 11 minutes of competition, got sleep deprived and maybe didn’t eat well on the days of my competitions. But I don’t like to blame myself or be blamed for picking up a cold. Since I got home from Pittsburgh, I’ve been to a funeral, been to church, went to Jazzercise, grocery stores, etc… and could’ve picked this up anywhere. My big mistake was not really resting first before entering my ratrace life. My fatigue made me susceptible, that’s for sure, but I just don’t know why I keep getting colds this year.
I’ve been thinking a lot about risks and worth. I am reading an Edward Abbey book called Desert Solitaire, about a ranger who has adventures in the heat of the Utah desert, in Arches National Park. He tests his body and spirit but survives to tell a great tale. I just watched “Into the Wild” about a young man who takes off to live in Alaska and dies there. I fantasize about taking these risks too, going off and trying to live in nature myself just for a few nights alone. My silly dream is to go skinny dipping in a mountain stream/lake, putting off my fears about animals/weirdos/germs/being alone. What a confrontation of fear going off into nature would be. Besides, why do just men do it? I love these stories about people who truly LIVE, defy the social expectations, go into the woods and willingly take the risks.
My 10 year-post lung transplant CF friend from abroad just emailed me saying she has decided to get pregnant. I know the statistics about survival on that… She’s longed for her own child for a decade now and is going for it. While I have my fear and judgment about that choice for her (and for me), I salute her courage to take the risk and ask, “What is more important, living for years and years without my dream, or taking the chance to fulfill my dream even if I may not live as long?” What would you do? Didn’t Dawn have the best 3 years of her life as a mom, even if she died way too soon? She could’ve died now anyway without a child, but she took the risk to fulfill her dream of being a mom and DID IT.
Going the the Transplant Games or participating in any huge physical challenge involving crowds and travel and stress involves risk. I took it. Now my insurance company is paying the price. I hope this is just a minor price. But yelling my head off with our woman’s track and swimming relay (and getting Gold) was sooooo worth it. Was getting six medals worth being in the hosptial for 5 days? You bet your sweet ass it was. I pray that complications don’t arise to make me regret this, and that all my transplant friends who may be sick too don’t have seriou sequelae either. But the Games are what life is all about- the highest of highs and greatest celebration of being alone. I would never miss it because of the fear of getting sick afterwards.
I close with a great quote from the movie “Into the Wild”. Christopher McCandless writes, “I also know how important it is in life not necessarily to be strong but to feel strong.”
I felt so strong at the Games, like I could live forever and compete and win and BE AN ATHLETE. This infection is a sure wakeup call, so, okay, maybe I’m not all that strong. I have limits. But inside, I still, and will always feel strong.
I wish you all the same feelings of strength.
Let me just close with one venting. I really don’t want my hospital posts to be bitch sessions… But at 6am a nurse walks in and wakes me and says “How many times did you urinate last night?” I groggily came to my senses and mumbled, “Uh, twice.” She turned around and opened the door to leave. In my sweet but innerly annoyed way I said, “Is that it? Is that the reason you woke me?” She apologized and left. I am glad I finally have the courage to be assertive and make that nurse THINK how rude it is for us patients. Fifteen minutes later they came to take my vitals, thirty minutes later to check the sugar, etc… wouldn’t it be nice to combine everything?
This is a reminder that strength is not just physical but strength is also the ability to handle frustration gracefully and have the wisdom/confidence to openly tell people how they make you feel- without being bitchy or rude. I’m working on that.
Thank you for your support. I am resting because of sleepless nights and appreciate emails but please don’t take it personally if I don’t always pick up the phone.
Please have a beautiful weekend,
Love Isa
July 26th, 2008 at 6:12 pm
Isa: Thank you for your very honest & exciting posts. I do hope you get better really soon, and can leave the Solumedral & the hospital behind… I will REALLY miss seeing you at the picnic (tomorrow).
I am so proud of all of the NORCAL athletes - Ana!!, you, Lara (wow!), Stacey & Lorma! It is great that you’re all working on what YOU want to do! I saw Stacey yesterday and she looked fabulously healthy & strong!
I agree that feelings about death are just here a lot of the time…I’m too lucky, why did that very young person die instead of me, etc…but I agree that going after what you most desire is very important - no matter the risks. (I do consider my partner who would be devastated without me, and for whom I have enormous responsibility & respect. So - I’m not going on tour with any bands…
I read Into The Wild, and I recommend that - it’s very different from the movie, and has a better sense of McCandless. The book fascinated me so much, as you can imagine…
It is true that saying & feeling strong is very important & wise - it helped me through many years of doctors’ saying “You won’t make it past X years…” Emotional strength is good, too. I completely agree about getting any long sleep in at the hospital. What is their problem?!
Much, much love to you and all of the other blog-readers… JMS
July 27th, 2008 at 3:02 am
Dear Miss Isa -
First I want to say that I’m sorry you’re in the hospital — I hope it goes by quickly! I have so enjoyed reading your posts about the transplant games, and experiencing them vicariously through you. As always, you are a great writer.
I’m glad I logged in tonite to check the blogs (my sister is writing updates on a cross-country trip they’re on right now - how fun to compare their trip to yours; they are visiting many of the same locations as you & Ana, only with 3 pre-teens in tow - yikes!)
But I’m glad to be able to offer my support for you, and say that you are right — no one should try to make you feel guilty for catching a cold, or for living a full life. Especially the transplant games — I know how much they mean to you, and to the donor families you touched. I too have received similar scolding and “I-told-you-so”-s — from people who I know love me and mean well, but who also could never understand the need to live life NOW, and to experience the true desires of our hearts. I have sometimes had to remind them that, “When I really am facing the inevitable someday, do you honestly want me to be blaming myself?” — and that works well to shut them up for a time!
And as someone who has just spent the last month & 1/2 working a lot of overtime and frequently sitting alone in front of a computer, I have to say “Bravo Isa!” — you are such an inspiration, and a great reminder to make that effort to feed the soul and live life meaningfully. Thank you!
I’m glad you caught this thing early and that they are treating it agressively. Relax, enjoy the downtime and try to get in as much rest as possible (yes — I was reminded once, “You are in a hospital, not the Hilton” when I questioned the constant interruptions - HAHA, I was not laughing too hard about that one)
Stay strong!!
Love & hugs from Santa Cruz,
Patti a
July 27th, 2008 at 9:44 pm
Hi Isa,
Just wanted to send you love and support. Hope you are out and back to your ratrace life very soon.
I know I have been accused in the past of running myself into the ground. Truth is, I gotta do what I gotta do while I can still do it. Loving life is not a crime and if it is lock me up!
When I got Rocky Mountain Spotted Fever, people blamed me for walking dogs in tick season! If I stopped walking my dogs for fear of tick bites I would not be living up to the promise I’ve made to my donors–to live hard and live well in their honor.
If anyone defines living hard and living well, that’s you. Sometimes people just don’t understand the desire to suck the marrow out of each day after transplant.
Who knows if all of your work and exertion at the games made you more susceptible to a cold but, who cares? Would you change a thing? No way!!! I’m sorry they hurt your feelings but, perhaps they just don’t “get it.”
July 30th, 2008 at 10:01 pm
Dear Miss Isa -
First I want to say that I’m sorry you’re in the hospital — I hope it goes by quickly! I so enjoyed reading your posts about the transplant games, and experiencing them vicariously through you. As always, you are a great writer.
I’m glad I logged in tonite to check the blogs (my sister is writing updates on a cross-country trip they’re on right now - how fun to compare their trip to yours; they are visiting many of the same locations as you & Ana, only with 3 pre-teens in tow - yikes!)
But I’m glad to be able to offer my support for you, and say that you are right — no one should try to make you feel guilty for catching a cold, or for living a full life. Especially the transplant games — I know how much they mean to you, and to the donor families you touched. I too have received similar scolding and “I-told-you-so”-s — from people who I know love me and mean well, but who also could never understand the need to live life NOW, and to experience the true desires of our hearts. I have sometimes had to remind them that, “When I really am facing the inevitable someday, do you honestly want me to be blaming myself?” — and that works well to shut them up for a time! And as someone who has just spent the last month & 1/2 working a lot of overtime and frequently sitting alone in front of a computer, I have to say “Bravo Isa!” — you are such an inspiration, and a great reminder to make that effort to feed the soul and live life meaningfully. Thank you!
I’m glad you caught this thing early and that they are treating it agressively. Relax, enjoy the downtime and try to get in as much rest as possible (yes — I was reminded once, “You are in a hospital, not the Hilton” when I questioned the constant interruptions - HAHA, I was not laughing too hard about that one)
Stay strong!!
Love & hugs from Santa Cruz,
Patti a
August 2nd, 2008 at 8:33 am
Hola Isa!
I hope this blog finds you feeling mucho better! Congrats to you, Ana and the rest of Team NorCal!
I hear ya about hospital staff preventing you from getting any Zs! When I was hospitalized (a lil over a year ago) they would tease me for all the sleeping I did! Yeah right! I was justt rying to catch up during the day all the sleep I missed at night!
TTYL!
Hugs!
Kim (from Team Florida)
August 2nd, 2008 at 8:33 am
I meant to say “blog entry of mine.” Blah. I need to learn to talk-er…write.
August 4th, 2008 at 4:11 am
Dear Ana and Isa
Sorry to intrude upon your blog as a complete stranger, but I do know of you from your brother Ryuta. I am a friend of his from Japan, and I wonder if you would be kind enough to either email me his email addy, or failing that, would you email him mine.
Thank you in advance
peter
Takamatsu, Japan
August 18th, 2008 at 7:15 pm
Isa- I love you, and I respect your posting so much. Personally, Ben and I have talked about having kids, soon, only because I am getting older and I don’t know when my body will want to give up. Now keep in mind this is my opinion only, I would recommend to you the thought of adoption. Only because, your body has been through so much already that to put it through a pregnancy I would think would be an overkill. And, I know you want to me a mommy, but if your body is too tired to live out that dream then is it really worth it. Well, there is my two cents…I miss you!
~KL