Serious Infections – Feeling Weak and Tired
I wish I could offer you happier news, but in fact, things have been getting worse, not better. The incision from my heart surgery has opened, and they’ve found a serious infection. It’s a nasty bacteria call Serratia. We dress it every day, and it is oozing out large amounts of yucky stuff. At the same time, I finally got to my podiatrist to treat my painful leg wound, and she cultured that and found that was infected with an also nasty (but less severe) bacteria called pseudomonas aeruginosa.
The good news is that I have an amazing healthcare team working together on this. Last Monday, when we got the results of both cultures, Liz Wirth, my plastic surgeon’s nurse practitioner, got to work and coordinated my nephrologist, plastic surgeon, cardiac surgeon, and podiatrist and brought in an excellent infectious disease doctor. By that evening, I started having intravenous antibiotics (ceftazidime) three times a week during dialysis. They gave me the option of going back to the hospital so they could handle the daily dressings and intravenous treatments, but I strongly preferred to stay home – and between Jessica, my aide, and Ken and Shoshana on weekends, I’m getting excellent care for my wound dressings.
At first, I thought this was something that would be resolved in a short time. But when I met with the infectious disease doctor, he made it clear that I would need six weeks of intravenous antibiotics, that there was a strong likelihood that they would kill both infections, but there was a risk that they would not. He thought the infection went very deep. My cardiologist added that if they don’t kill off the Serratia, it could get in my bloodstream and my heart and be even more dangerous.
In addition, assuming the medication does work, I will need another significant surgery under general anesthesia to put everything back together once the infection clears. But they are giving me more time to get stronger – and for the infection to be killed off – before they do that. But that will be another setback to feeling stronger.
I’ve been spending the week mentally trying to wrap my mind around all this, and how to write about it in this blog. Do I shout “I’m very sick!” or “I have a life-threatening disease?” Today we had a long talk with Liz Wirth, the plastic surgery NP, and she helped calm me down a bit. She thought it was a very good sign that I had no fevers or chills or other evidence that the infection had gotten into my blood.
All this also helped me understand why I’ve made so little progress in getting stronger – I’m weaker than I was earlier after the surgery, and it keeps getting worse, not better. As she pointed out, I have so many issues going on – recovery from heart surgery, kidney injury, ischemic colitis, two serious infections, and more, that, understandably, I’m feeling weak, short of breath, and not making progress despite my efforts. That helped me feel more forgiving to myself for not working harder at rehab.
Meditation
I was a member of Makom Havurah at the Jewish Community Center for five or six years, and always felt like the black sheep of the class, because everyone else practiced seated meditation frequently, and I hardly ever did. But I loved the people, the readings, and the class sessions where we meditated together and did other learning activities twice a month. Rabbi Jonathan Slater, one of the two leaders of the group, read my blog and wrote:
I understand from your email to Carol that you attribute some of your ability to go through this long process with some ease because of your work and practice with the Havurah, which is heart-warming for me, but truly a tribute to your own dedication to the practice, and integration of the practices into your life.
Not to mention being able to dance, even while so limited in mobility in the hospital; to go for walks with Ken and enjoy the world you inhabit; and the support and love from friends around the world.
May you continue to heal and grow in strength.
Spider Solitaire as a Metaphor
Our dear friend, Susan Schorr, recently taught a series of classes on metaphors at West End Synagogue. The other day as I was playing my favorite smartphone game, Spider Solitaire, I realized there was an important metaphor here. You lay out cards, move them around, and try to put together and remove sets of ace to king of one color until the board is empty. In some deals, everything just falls into place easily. In some, nothing works at all. In others, things start out going easily and then I get stuck, and in others they start not going well, but in the last round things surprisingly fit together. I noticed that while I enjoyed winning deals, I was also curious and impressed with how things worked when they went wrong and I especially liked the deals where things fit together at the end. I noticed that my curiosity about Spider Solitaire, and my interest in what’s happening whether I was winning or losing was the same curiosity that they encourage in the meditation world.
I’m grateful that I’ve mostly been able to take a similar attitude toward my life right now. Although I have moments where I feel frightened that I’m dying, and times that I cry from exhaustion and struggle just to stand up from a chair or walk a few steps, most of the time I just watch and am curious and try to understand what is happening. And I think about how to tell the story to all of you!
My New Mantra
All through this time I’ve had the support and advice of Marion Mackles, a dear friend from West End Synagogue, who is a very seasoned and superb respiratory therapist. She has visited in person and counseled me by phone and Zoom. She has taught me breathing techniques like “pursed-lip breathing” to use when I’m short of breath.
In the early 1970’s, I was trained in Transcendental Meditation, and they gave me a mantra (which I no longer use) and told me to keep it a secret. Ken has always been a bit annoyed that I won’t tell him my mantra. The other day, I realized that when I was short of breath and stopped and did pursed lip breathing, my mind said “Marion” with each breath. I decided that “Marion” is my new mantra!
Today Marion summed up the advice for now, that I need to rest a lot, walk a bit – but that the most important thing right now is resting.
Kulanu
I continue to actively be involved with Kulanu, and am delighted by developments there. If you want news of Kulanu and upcoming events on Zoom, just write to kulanu.org/contact and give us your email.
You
Thanks for your love and care. Thanks for understanding that my story is long and complicated and hard to write, so I’m not able to briefly answer, “How are you doing?” Thanks for being willing to help or visit but respecting the fact that between dialysis and doctors’ appointments and the need to rest, I have to limit visitors. Thanks for understanding that Ken also is on duty a lot and also needs time for himself, so phone calls aren’t helpful to him. I understand the feeling that a friend is ill and I should reach out, but this experience teaches me that an email or blog comment is easier to receive than a call or visit.
I send my love to all of you, and special good wishes to the many others who are also patiently dealing with health ordeals, though less publicly.
Harriet,
It’s late now so my answer will be short. I’m sending you healing energy. I admire your strength and dedication. You are making progress even when you feel like you aren’t.
Margie
Koach, koach, koach; strength; strength; strength! Love, and stay safe, Aliya (Paul is on a tour of The Winter War in Finland and he presented his photography to the Helsinki Jewish community last night!)
Harriet I’m Praying for you all the time and tonight will be my first prayer when I light candles . May your strength improve quicker than anticipated. Shabbat shalom Genie
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Overwhelming news from you. We pray for you daily as you face these new difficult challenges. Thank you for the update, especially with all you are going through. We love you. Shabbat Shalom. Bill and Mary
dear Harriet
please keep up your brave efforts, including efforts to be curious and to meditate and to rest. My gratitude goes out to ken and Marion and the whole team. we send you hugs and hand holds’
Sending our love and prayers for healing all day every day. Wish we could do someth but, you and your team are doing everything possible. Love,
Dorothy and Michel
Judith Friedman
Dear Harriet, You are amazing, strong in the face of s many challenges. I am coming home on Sunday and will try to be the very best and supportive neighbor I can be.
With love and admiration, Judith
Harriet
You are such an amazing individual!
Your attitude is an inspiration to all of us
Shabbat Shalom
Mark and Jo Ann
Thank you for sharing this update. Your mental and physical strength are incredible and something we should all aspire to. Even though it may not feel like it to you, reading your posts is uplifting. We are holding you in our thoughts and our tefilot. Shabbat shalom.
I appreciate the courage and strength you bring, Harriet, and the supportive foundation of your meditation practice. I wish you continued strength and courage. I send prayers and much love to you, my precious and trailblazing friend.As well as to Ken and the family. Hadassah also sends her love. Chaya
Dear Harriet, I think of you and Ken a lot. Your strength and determination are so inspirational. Sending you all my best wishes for refuah sleimah. Don’t hesitate to ask if there is anything I can do to help. Marina
Dearest Harriet
We are deeply saddened to hear of your medical challenges and we are both sending you prayers and blessings for strength and healing .
You are the most remarkably resilient and emotionally powerful woman I have ever known apart from my Mom who was a bastion of unshakable strength and optimism like you .
Your passionate spirit carry you through your health challenges and your strength of soul is admirable and to be aspired to by us all .
We send you big love and many blessings
Suzanne and Ken
The good news is that you are indomitable and will beat this thing. Your courage is something for all of us to be in awe of and to admire.
Love,
Peter
Shabbat shalom, Harriet and Ken. Hoping for you that this difficult hand dealt to you soon falls into place and all resolves with the winning hand we all pray for you. With much love,
Debbie
Dear Harriet. Just wanted to let you know I’ve been thinking of you and rooting you on in your recovery. We missed you at our mini-reunion in NY. I may be there again in December, and will be hoping to see you then. Yours, Jim
Dear Dear Harriet, thanks for sharing your complicated health challenges. You are such a remarkable woman. Holding you gently and lovingly in my heart. Joanie Levine
Dear Harriet,
I began an email yesterday but it disappeared after I got distracted. I wanted to tell you that I have been thinking sboit you and, as Enid wrote, we were worried after not hearing from you in a while. Now I understand that a lot has been happening and that your health situation is complicated. I am glad you have a capable medical team and strong supports at home, especially Ken and Jessica. I wish I could call or visit but will respect your wishes. You are a strong person with good sense and a great attitude all of ehich should help you pull through these challenges. You are in my thoughts and prayers.
Love,
Bobbie
Dear Harriet,
As distressing as it is to hear about your health ordeals, it is amazing how you manage to include comments that are so uplifting. I’m thinking at the moment of Spider Solitaire and how you’ve learned how to distance yourself at times from your anxiety and look at the situation with distance and curiosity. You have reminded me how urgent it is to develop this capacity and I thank you for being able to offer that message even while you are going through so much.
Sending you all our love and prayers. May you soon turn a corner and leave the roller coaster behind.
Love,
Barbara and Mel
I hesitate to bother you during these so difficult times. I don’t want to ring your doorbell and disturb you, but I want to remind you and Ken that I am here and available if there is anything I can do. Thinking of you both, Carole
Milton and I send our love. We hope these infections will easily succumb to the IV antibiotics. We hope that you keep on fighting this, and that what you do will succeed. Please keep telling us exactly how things are. We want to know. We will keep praying for you. My new mantra is “Keep calm and carry on”.
Here is Philip Booth’s poem, First Lesson:
Lie back, daughter, let your head
be tipped back in the cup of my hand,
Gently , and I will hold you. Spread
your arms wide, lie out on the stream
and look high at the gulls. A dead-
man’s float is face down. You will dive
and swim soon enough where this tidewater
ebbs to the sea. Daughter, believe
me, when you tire on the long thrash
to your island, lie up, and survive.
As you float now, where I held you
and let go, remember when fear
cramps your heart what I told you:
lie gently and wide to the light year
stars, lie back, and the sea will hold you.
Dearest Harriet
We are deeply saddened to hear of your medical challenges and we are both sending you prayers and blessings for strength and healing .
You are the most remarkably resilient and emotionally powerful woman I have ever known apart from my Mom who was a bastion of unshakable strength and optimism like you .
Your passionate spirit carry you through your health challenges and your strength of soul is admirable and to be aspired to by us all .
We send you big love and many blessings
Suzanne and Ken