Do you believe in angels? I do. I believe that God sends signals to us all the time and if we are receptive to them, we can read His messages. Well, last Saturday, a week after I was discharged from the hospital, I was feeling short of breath and discouraged about my health. I had received a phone call the previous day from my doctor’s office stating that my cytomegalovirus (CMV) count was high again, indicating that the drugs were not working and that I may need to be admitted again to consider infusions of a stronger anti-CMV medication called foscarnet. However, this second drug is highly toxic, has to be infused 7 hours a day for one month, and costs $36,000 per infusion, so the docs changed their minds and decided to redraw my CMV level. I was feeling much better after being discharged from the hospital and it didn’t make sense that my CMV level was at the maximum the test goes again after being treated for 10 days. I had my blood redrawn and was on pins and needles waiting for the results. Being the spoiled child I am, I couldn’t bear thinking of going back into that dehumanizing, unnatural, immobilizing setting of the hospital.

 So on Saturday, I was feeling discouraged and fearful. I was walking on Stanford campus with Isa and the dog, and a guy walked up to us to admire our wonderful dog (sorry, I have to brag- she is the best dog in the whole world and attracts admirers all the time). We were talking about the dog, then the guy noticed Isa’s CF Retreat sweatshirt which has a lung logo on it. He asked her, “Why are you wearing lungs on your shirt?” She explained that she had a lung transplant for CF. The guy then stated that he did too! He was visiting Stanford campus from out of state since he graduated from there. He was 17 years post transplant for CF! What a small world! I shared with him my recent bumps in the road of acute rejection and CMV, and he was so reassuring and encouraging. I believe that there was a reason that we bumped into each other, and this was not just a coincidence. He was like an angel sent down to give me encouragement at a time when I needed it most. Seventeen years post transplant is the longest CF double lung survivor I have ever met. It really gave me hope.

 As I am busy planning my wedding, I want more than anything to have years ahead with my husband-to-be. These bumps in the road shake that vision, and it’s easy to fall into the woes of what many lung transplant recipients feel – a sense of mortality staring at us in the face, and an uncertainty of the future. All the sudden, future plans become cloudy and the possibility of creating plan B’s for everything come rushing forward. When my transplant goes well, I am gifted with a temporary fantasy world, that I can do and plan and strive for anything. Then reality sets in and I have to realize I am a patient. I will always be a patient till the day I die. That is the life of a transplant recipient.

 Do you remember that comedian who did a series “You know you’re a redneck when…?” Well, here’s another version of that:

You know you’re a lung transplant patient when:

1. You have pills, masks and antibacterial hand gel in your pocket or purse
2. Your signature looks like you used an Etch-A-Sketch to sign, because of drug induced tremors
3. You know your creatinine, lung function, white cell count, and prograf level intimately.
4. You talk to your healthcare providers like they are friends (or enemies?).
5. You frequently spout out four letter words
6. Your cough-sniffle radar is on high alert in public places and you run away in hysterical paranoia when someone sneezes or coughs near you
7. Your diabetes is a piece of cake compared to everything else you’ve been through
8. Any day above ground is a good day
9. You honor and appreciate your donor family with all your heart (or lungs).
10. You freak out with any fever, wheeze, phlegm, shortness of breath, or pain in your lungs
11. You are terrified of children because of their germs
12. Your insurance company hates you.
13. You are an “inspiration”.
14.  You have an excuse to weasel out of the dirty housework and gardening.
15. You love the wrinkles you see on your face and welcome every birthday.
16. Your mind wants to do more than your body can.
17. You keep your hospital in business.
18. You can drive to your hospital with your eyes closed
19. You have felt like hell and hated your body at some point
20. You have felt wonderful and loved your body at some point. 

So there you go. I’m sure there are many other statements that would be appropriate, but you get the point. There is a universality in our experience for sure.   Funny thing is, a few months ago, the notion of being ill or held back by health was in a remote part of my mind as I pranced around Japan preaching the joys of transplant. Now, in a flash, health is once again in the forefront of my existence, as it is for so many transplant recipients. Don’t get me wrong, I still feel strongly that the joys of transplant make every bump in the road worthwhile, and I have no regrets.  I hope that the Japanese and others who are skeptical of transplant realize that there are true realities of being a lung transplant recipient and that shit can go wrong but that does not make it a risk not worth taking. These are the reasons that “transplant is not for wimps” (to quote an old doctor of mine). There can be bumps in the road and one has to be willing and able to deal with them, physically and mentally. I met someone with CF while I was in the hospital who said he never wanted a transplant. That takes guts, and to me, is more courageous, but truth is, if one doesn’t want to deal with all the bullshit that can potentially come with the territory, then one shouldn’t be forced to have a transplant if one doesn’t want.

 My redraw of my CMV count is now at 36,000 indicating that the previous test was wrong (#*#&!) and I am indeed getting better. Therefore, I do not have to have Foscarnet, thank God. Tomorrow I return to transplant clinic to have a pulmonary function test and to see what my lung capacity is. I pray for good numbers and preservation of the lungs I have left.

 Many thanks to all of you who have called, emailed or sent encouragement and love. I am surrounded by many angels and am grateful for God’s love, which is manifest through all of you.

Thank you for your continued interest in our blog. I encourage you to visit our revamped website: www.thepoweroftwomovie.com. Great job on the facelift! We are so grateful for our production team!

 May you enjoy deep breaths and treasure your health always.

 ANA STENZEL 

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