Harvey Is Very Sick
I have not written for a while - partly because I have been very busy, and partly because I have not had the heart to write. But I did promise to tell you the truth and nothing but the truth - so here goes. You might want to sit down for this one.
Harvey was readmitted to the hospital on Saturday, June 14th. His “Fevers of Unknown Origin” (which had been simmering for a while) took off again and this time both his blood pressure and oxygen saturation levels headed into unhealthy ranges. Harvey had always had the heart and lung capacity of a much younger man - courtesy of years of regular exercise. Now he was becoming out of breath. I made the decision to take him into the hospital for immediate admission.
Lucky I made that call when I did, even though I had to struggle past rather uncooperative doctors and “fellows” manning the weekend shift. A chest X-ray showed slight infiltration in his lungs, not enough to be classified as full blown pneumonia, but nevertheless worrisome. They suggested Harvey use oxygen overnight, just to be comfortable. By next morning, oxygen supply via the cannula (little plastic tubes at the tip of one’s nostrils) was no longer sufficient and we had to move to a full mask covering his mouth and nose.
The rapidity of events after this was truly breathtaking, I am still reeling from shock. We went from mild opacity in one corner of the lungs on X-ray to full blown total “ground glass opacity” of entire volume of both the lungs in a matter if 24 hours. A pressure assist oxygen delivery system (“Bi-Pap”) was suggested as a way of keeping Harvey well oxygenated, a way of avoiding full intubation and ventilation (machine controlled breathing). That lasted less than 12 hours. The “prudent and pre-emptive” intubation rapidly became a crisis management procedure. Harvey’s lungs gushed a whole lot of blood as they were trying to intubate him, he was bleeding and losing blood faster than they could replace with transfusions.
Since last night Harvey was on the intensive care section of the transplant wing, listed as critically ill. He is in a medically assisted coma, to keep him fully sedated as they tried to stabilize him. It was a touch and go last evening. I was told to call the family in, none of the many docs milling around gave me any assurance he was going to make it overnight. As one expert put it, he is as sick as a person can be and still be in the land of the living.
Harvey made it overnight, much to everyone’s surprise. Right now he is resting easy. We have a better control on the internal bleeding (we think), blood pressure and heart rate have stabilized. But he still needs almost continuous transfusions of red blood cells and platelets, just to keep him going. His blood counts have all crashed, he is in full blown pancytopenia with WBC hitting a scary 0.1K this morning. We are fighting multiple wars here. During all this trauma he had an episode of atrial fibrillation, which seems to have caused damage to his heart. His lungs are a bloody mess, any one’s guess whether they will be able to recover, ever. His kidneys are struggling.
What caused this devastating cascade of inflammation that made mincemeat of his lungs, implicated his heart, and overloaded his kidneys? No one is quite sure. But this much is sure. Harvey’s life is hanging by a very slender thread and the odds are not good at all that the frayed thread will hold. I am pretty much in shell shock, after have been up for three nights in a row. I would have crashed completely but for the strong shoulder of our daughter. And now our son-in-law is here as well to lend support. A very special thank you to “Lisa”, a true friend in need.
Will Harvey make it? I don’t know. I wish I could tell you that I am optimistic. Every time I try to read the tea-leaves and suggest an optimistic outcome, I am cautioned against false hope by the experts. Their consensus is uniformally bleak.
My heart and soul are aching with grief and tension. I will try and update you again in a couple of days. Right now the world is a dark and scary place and I do not know whether either of us will make it alive out of this nightmare. I am forcing my self to write, mostly because it is what Harvey would have wanted. This Journal is his legacy to the CLL patient community he loves - I hope against hope that he will be around for a long time to continue his crusade.
Please forgive me for not replying in person to all the caring and worried emails you have sent me for the past week or so. I hope this Journal entry will help keep you in the loop. You deserve no less.
Love,
Chaya
49 comments on "A Very Hard Reality to Face"
Follow-up comment rss or Leave a TrackbackChaya
Our hearts are filled with hopes & prayers for PC. Between you & your family’s prayers & those of the entire CLL community we need to pull him through this terrible change of events. We love you both so very much. We will continue with our positive thoughts for him to recover.
All of our love,
Anne & Alan
Dearest Chaya, What a heavy heart we all have. We will be thinking of you in the next hours and days and wish so much there was something we could do. I am without words to express myself, but you know how much we both care about the two of you. Hold on, and please whisper to PC that we love him. Love you too Chaya. Love to your whole family.
I pray for you both. We all wanted a happy ending and hope for that.
With nervous anticipation we were awaiting your posting. With teary eye I hold you & P.C. in my heart. Strong and intelligent you are, perservere we must. Be well Chaya.
Chaya, My heart and soul are aching with you and for you both. This is unbelievable. Can you bring in any consultants, or at least contact one to see if there is anything more to be done to help PC get through this?
PC has been strong. I hope that the medically induced coma gives his body an opportunity to recover his will and strength. Please stay close and keep telling PC that all of us are asking for God’s help and routing for him every minute of the day and night. I’m sure he will sense your strength and presence and know that he needs to be get through this.
It’s always darkest before the dawn. We all love and care deeply for you both.
I pray for better news soon.
Please know that people in Tucson are pulling for Harvey, you and your family.
I send you all the best wishes I can muster.
Steve
Dear Harvey & Chaya, You are admired & loved by all you are touching. My wife & I will pray again & again for Harvey’s full recovery. Love Stan & Dorrie
I honestly don’t know how you managed to write the above post with all the emotional chaos surrounding you. I am deeply saddened to hear of PC’s situation. I am glad that you have your daughter and son-in-law by your side. Know that we, your CLL family, are holding you in our arms.
My heart flies to you,
Jenny Lou
Dearest Chaya,
My prayers are continuous and I know our whole community shares in this with me. I do not hope against hope, I recognize all of our lives in Harvey’s expedition, your commitment and the courage and strength you both have. We are all here in the light and the shadows-as we journey on. May it be. . .
Chaya,
I’m a stranger to you both, but have followed Harvey’s story closely, every day. Because what you are both doing isn’t at all somebody else’s story - you are the rest of us.
I doubt anything is much comfort, but you both have given so, so much to the CLL community. I know you know this, but it bears repeating at such a dark hour. Please know that the information people have had access to through your efforts, and now through your courage, has been more than a source of comfort and knowledge. I have no doubt it has added years to many, many lives.
I hope with all my heart that some of those extra years can be applied to Harvey now.
All my hopes are with you. I wish I could express how much,
Helene
Chaya,
We send all of our prayers and love to you and your family.
Randy and Carla
Dear Chaya -
What an incredible font of strength you must be to have mustered the will to compose this stunning entry. My heart aches with what you’re going through now. I can only hope and pray that PC will pull through and someday - soon - you, he and the rest of your family can reflect on this time and recognize that this was your finest hour.
What can we say? This is so scary for all of us—but we know you are both strong, and all we can do is hope for the best.
Our prayers are with you—-Marilyn & John
Dearest Chaya,
We are shocked by the news; this is something we never expected to hear. Our hearts are filled with love for you both. PC is such a fighter. If there is anyone who can reach down deep and pull through this, it is him.
Dr. Jerome Groopman, a hematologist/oncologist who has practiced for some 30 years, wrote a book called “The Anatomy of Hope.” In it, he reminds us that “Omniscience about life and death is not within a physician’s purview.” Sometimes the experts are wrong, sometimes they are surprised. Groopman saw over and over again that “It is part of the human spirit to endure and give a miracle a chance to happen.”
PC is still in this fight. We send all our love and wish we could be there to give you a hug. Please accept it from afar.
David & Marilyn
Dear Chaya,
I am another stranger to you, but I also feel like part of the family. I was anxious from the moment I woke up on your day zero. I have shared the ups and downs from afar. Your posting of this experience has been invaluable to me. It is also the most “informed” consent I think we, patients facing transplant, can have in preparing ourselves and our families for transplant. I am forever grateful that you and PC are willing to share this very personal experience with us. I know that it is a very heavy burden at this time. Please do not feel obligated to continue posting. All of your strength and support is needed in Minneapolis. Please remember to take care of yourself while you are caring for PC.
I am an anesthesiologist who has worked in operating rooms and intensive care units for 25 years. Many times I have felt that all was lost and subsequently be surprised that a patient was able to pull through a very dark and difficult situation. The resilience of the human body never ceases to amaze me. Let the doctors worry about the percentages. Now is the time to focus on hope, love, and family.
My thoughts and hopes are with both of you.
Steven
Dear Chaya
I am very sad to hear of the latest news. Please know that you and PC are being prayed for by many of us.
Michael
It is with tears I am reading this entry. I am so shocked and sharing your sorrow.
I will be asking others to pray for you both.
I know this entry was so difficult for you to write but I am praying that the support you feel from others is a strength to you.
Liz W.
Chaya,
You have so many pulling for you. You and Harvey are in the hearts and minds of so many. Use your gifts and passions to help the man you love in the ICU. You tell us the story later
Much love and endless thanks
Brian
Chaya,
The CLL community has benefited enormously from your website may you and PC now benefit from our prayers abd best wishes
Richard
Chaya -
All the love in the world to you and PC…
Chaya,
I am so sorry to read this journal entry. Please, please, just try to hold on and focus on PC. There can be hope.
Barry
Dear Chaya, Last night was Relay for Life in our county, and I thought of you and P.C., not knowing what had transpired. Please give P.C. the message that all the CLL community is pulling for him and for you. I am praying for you both. You have touched so many of us in so many ways, from the practical to the emotional level, and all of us on the journey through CLL will be ever in your debt. Be strong and know that many are surrounding you with thoughts of love and prayers. Paula
Chaya,
Based on personal and family experiences, I hope you are getting enough sleep and rest. Even devoted, seemingly strong caregivers like yourself are not exempt from altered sleep patterns and sleep deprivation.
Some of the best sleep aids are very natural — darkness, quiet, white noise, a relaxing walk / jog, yoga, a warm bath, a siesta after lunch, etc. Babies demonstrate that the safest sleep aid from a bottle may be warm milk!
Continued best wishes,
Don
Dear Chaya,
Barb and I are praying for PC and you. You have been incredibly strong for PC and we know no one could have done more for him than you have. The two of you have helped so many of us, I only wish we could do something for you.
Steve
Chaya,
Thinking and praying for you and PC at this moment. We in the CLL community are all here with you lifting you in prayer. Praying for good news very soon. Hang in there and don’t lose hope.
Denyse and Joe
This is devastating news. I had hoped that no news was good news, but I am afraid this sounds like pulmonary hemorrhage following graft failure - always a hazard after double cords, though it is not the only possibility. My thoughts and prayers are with you both.
All of our prayers to your family and PC’s doctors, nurses and all who watch over him. May the lord shine his light upon you all and may he bring peace and hope to all who love you.
DWCLL
Chaya:
My heart aches for you as though Tony did not have the transplant, he also had the same problems with the breathing and bleeding at the end. I pray for a miracle for you as I didn’t get mine, maybe you will get yours. Love & prayers to you & your family.
Our thoughts and prayers are with both of you.
Chaya
With tears I am writing this and also with a heavy heart.
My thoughts, prayers and love are with you both.
Rita
Dear Chaya,
You are a very brave women, and extremely insightful. The world is a better place with people like you and PC. I will pray for both of you. Valerie
My thoughts and prayers are with both of you.
I am so sorry to read your news, Chaya. I want you to know that I’m thinking of and praying for you, PC and your whole family as well. Sally
I am so sad that you two, who have worked so hard to make CLL more understandable, and have supported research, are having such a tough time now.
I am hoping for PC’s recovery.
Chaya,
I too am a stranger to you, but feel like family. I feel your pain and my heart goes out to you. Stay strong and do not give up hope. This is not how your story is going to end. Praying for PC and you and your family.
Hardip and Robert
Our prayers are with you both for PC’s speedy recovery. I know he is fighting like the champion he is and with you cheering him on and all our prayers he can’t lose.
Sorry to hear of this latest news. Thank you for keeping us updated.
My dear ones,
You are both in my heart, and I send you lots of love and warm thoughts. We’re all SO grateful to you both, and hope for a good outcome.
Sherry
Dear Chaya,
Just know that words fail me now but our site of CLL Christian Friends are all praying and pulling for you and P.C. Thank you for all you do for us the CLLers of the world.You are so inspiring to us all!
All praise to the God and Father of our Lord Jesus Christ.He is the source of every mercy and the God who comforts us.He comforts us in all our troubles so that we can comfort others.When others are troubled,we will be able to give them the same comfort God has given us.
2 Corinthians 1:3-4
God Bless,
Thoughts & Prayers,
Deb
Chaya,
I too am another stranger to you, but you and PC have touched the lives of some many of us CLLers around the world, that all of us feel your pain. When I have been at my lowest your courage and commitment have been an inspiration to me. My deepest thoughts and prayers for you both.
Clum
Chaya Chaya..,How sad. We will pray for you to have the strength to endure. Dear PC please feel the love we all send to you. The two of you have always been there for all of us and we are with you both in the spirit of love and the caring sprit which dwells inside our beings. God be with you all. Paula and Gary G.
Dear Chaya, my thoughts are with you and PC. May you be get through this latest hurdle.
Dear Chaya,
We send you and PC our prayers and our love-you are both so strong and brave and an example for us all!!
Nancy and Coy
Chaya, I read the update with great sadness for the latest turn of events but my thoughts and prayers are with PC. Paul
Chaya to you and PC & your family ours hearts go out to you.
Mr.& Mrs. A.E.Sturnacle
Chaya
PC and your contribution to the CLL community is immeasurable. I realise the situation is grim.
My respect and love for two people I have never met is overwhelming at this time.
Love
Steve & Jo.
Chaya, I am keeping you and PC in my prayers as you both fight and wait. Thank you both for giving all of us in the CLL community such an immeasurable gift.
Love to you, Julie
Dear Chaya,
I have been away for several days and have just caught up with your posts. I am so very sorry for what you’ve been through in recent days. Vince and I are hoping that things are improving. You are so very brave and so capable. We are holding you both in our hearts.
Much love,
Chris
Dear Chaya,
You and PC are heroes to CLLers. We pray for a miracle.
Marlene