Dear Pam, Judy and All,
I think it's wonderful to be prepared prior to open heart surgery and to be provided with options for dealing with post-surgery mental health issues. I'm here to tell you, though, that there are many of us who have no opportunity to prepare in advance of heart surgery and our lack of that opportunity may influence whether and the extent to which we may experience mental health issues post-surgery.
I will use myself as an example. Nearly five years ago, I was a 67 year old man who had been working out continuously for 55 years as, at one time or another. a gymnast, wrestler, weightlifter, competitive distance runner and cyclist. I had a decades long history of high blood pressure, but it was well controlled by medication. I had no prior symptoms of heart disease. To the contrary, my friends and colleagues were amazed at my level of fitness and physical capabilities as a 67 year old man. The kids at the gym thought I was Jack LaLanne. And then I had a heart attack.
As I lat in the ER, after I was was given my angiogram, I remember the cardiologist telling me that stents would be useless for me and that I needed quintuple bypass surgery or I would not survive. I was told that surgery would take place 6:30 the next morning, I could not go home, there was no time to get an independent second opinion. I basically was told "Go directly to jail, do not pass Go, do not collect $200" for all you Monopoly fans. The only post-surgery information I had was that I would need to be awake for removal of the breathing tube.
I was remarkably calm. I wasn't afraid of dying. I'd already seen plenty death and dealt with my fear of death during the course of more than 30 years of Zen practice. I was much more nervous about removal of the breathing tube, having remembered removal of a nasogastric tube 30 years earlier when I was hospitalized with a bleeding ulcer. As it turned out, there was no need to worry about removal of the breathing tube because, due to complications, including ventilator pneumonia and a c-diff infection, I was kept in a medically induced coma for two weeks post-surgery with 50/50 survival odds and my wife having been told "I wish we had better news."
Well, I survived. I also survived the three additional weeks of inpatient rehab where I learned to walk and fees myself again, and I survived going back to the gym again, resuming my law practice and even running again. I'm now 72 years old and still going strong.
Beyond the physical, however, I underwent an incredible emotional and spiritual transformation, a sort of "hard enlightenment" from a Zen perspective. Upon my awakening from the coma, I was overcome with a profound sense of gratitude, a gratitude towards all the people that had saves my life and had supported my wife during her most difficult time contemplating my potential death and potentially dealing with our then 17 year old daughter alone. But it was more than that. I felt a profound gratitude towards being privileged to be alive, to experience everything good or bad going forward, to experience consciousness and awareness of everything right here right now. This has not changed over the past five years.
The one thing I would want the medical professionals, in advance, were this to happen to me again, is to let them know that I spent my entire time post surgery, while I was comatose and afterwards, having what they call ICC hallucinations and delusions. These were quite realistic and generally pleasant (I thought I was recovering from surgery in the Bahamas and assisting the hospital resolve its legal problems). They also are quite common in older patients and there even are blogs where patients discuss them. Nevertheless, the nursing staff had no clue about this and, in the future, I would want them to know in advance that, I might be subject to these. My other regret is that Dr. Oliver Sacks, the brilliant neurologist and author of "Awakenings", "Hallucinations" (and many other books), who I greatly respect, had died three years earlier and I never had the opportunity to discuss these experiences with him.
I tell people that I do have a sort of PTSD, but I don't regard it as malignant in any way. I will suddenly stand from a seated position, for example, and suddenly feel lightheaded from the sudden change in blood pressure and simultaneously flashback to being lightheaded in the hospitals. But it isn't a bad feeling. It's sort of comforting to understand that I'm not very far from that time and place when I realized that "I'm alive! I'm alive!" and that, one day, when it is my time to go, I am ready.
I no longer measure my life in goals for next year or next week or even tomorrow. The only reality is right now in this present moment and in each succeeding present moment, our only reality, the smelling of the roses. The past and future are just our movie of what we currently believe happened before and our projections of what we believe will happen in the future and what that might mean to our future happiness. They are the ghosts of what we recall of Christmas past and what may or may not become Christmas yet to be.
All the best to all and to all a good night,
Ira/Ebenezer Scrooge
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Ira Reid
Hoboken NJ
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Original Message:
Sent: 11-09-2022 14:51
From: Marilyn Rosenhouse
Subject: OHS of husband
Dear Pam and Judy
Thank you both for sharing your stories and concerns.
Currently I am 10 years post opand in gid condition. Because there were complications during and afterwards, my husband suffered more emotional trauma than I did ( I was in a coma for 10 days ).
I knew 5 years in advance that one day I would need surgery: my doctors did not offer any preop education nor did I ask or search for knowledge. Ignorance is Bliss ( or in my case: Denial. )
How much more scarier it is for survivors of cardiac emergency surgery ( heart attacks, CABGs etc) !!!
Hopefully your training programs will be shared with nurses and doctors and case workers social workers to help families. The cardio pulmonary therapists do provide a lot of the supportive information you suggested. Accredited Mended Heart visitors try to offer the information that you suggested to in patients, limited to the charge nurses discretion .
Thank you again .
Marilyn B. Rosenhouse
Mobile: (214)850-0655
Original Message:
Sent: 11/9/2022 12:05:00 PM
From: Judy Moses
Subject: RE: OHS of husband
Hi Pam:
Thanks for your email. I just wanted to add that I was knowledgeable of these effects. The issue is addressed in the medical literature and patient information. I did a lot of research and was prepared.
What was frustrating is that the medical profession provided no referrals for follow up treatment. I asked for assistance many times and had to find a referral on my own for my husband.
I am a former coronary care nurse and and it still angers me that the ball continues to be dropped today.
There should be a support group available at every major hospital for heart patients as is available for diabetic patients , cancer patients etc. A list of clinical psychologists should be provided at discharge.
An inpatient visit with patient and caregiver prior to discharge should be standard of care protocol. The patient can't do this on their own and most caregivers need assistance with this follow up.
My Dad died of heart failure years ago. He survived a 5 wall myocardial infarction at age 65 after respiratory arrest and ventilation and lived another 20 years. He told me years later that he always slept with the lights on at night after that. This is a guy that was a POW in WW II and was one of the most courageous men I had ever known.
Heart patients need emotional and psychological support period.
Sorry for the tangent but it's sad that this issue has not been dealt with by the medical profession and the American Heart Association.
The best to you Pam.
Judy
Original Message:
Sent: 11/9/2022 10:20:00 AM
From: Pam Hascall
Subject: RE: OHS of husband
Hello all - I just came across this thread. First, Judy, I'm so sorry that you and your husband are having to endure the emotional ups and downs that go along with heart surgery without being prepared ahead of time. It can be such a tough road to navigate for both the patient and the caregiver!
This topic is near and dear to my heart, and I am on a mission to help change the landscape of pre-operative preparation for heart surgery patients! I have been through two heart surgeries and after the first one, although my physical recovery was fine, I experienced a lot of anxiety, stress and depression for months afterwards. My husband said I was different and I felt different. I was miffed that the doctors/nurses/hospital did not prepare me for what to expect post-surgery.
My background as an instructional designer and change management consultant led me to start writing down what I would do differently for patients approaching heart surgery. When I found out that I was going to need a second surgery, I was determined to be emotionally prepared this time! I exercised, meditated, talked with my friends and family about my feelings, did yoga and prepared my home for recovery. My second surgery went smoothly and more importantly, I felt better emotionally post-surgery and so did my husband. It was because we knew what to expect.
I have since taken my original notes about preparing patients and families for heart surgery and developed a 2-hour course, both for in-person classes and also a video course that can be taken online. (www.cardiacconnections.net) I am working to spread the word to the healthcare community.
Emotional preparation (and overall prep) for heart surgery should be a standard part of the surgical process. It not only helps the patients and families have a better recovery experience, but helps doctors and hospitals through shorter hospital stays, fewer trips to the ER, better surgical outcomes and overall higher patient satisfaction.
The more we patients can spread the word that emotional preparation is needed, the less time it will take to change!
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Pam Hascall
1401 Green Oaks Drive
Greenwood Village CO
Original Message:
Sent: 11-08-2022 21:14
From: Judy Moses
Subject: OHS of husband
Hi Brett:
I read some of the threads you responded to. You have been through a lot. Thinking about you and your wife and you both are in my prayers. You have shared valuable advice and positivity to many. Wishing you both good wishes!
Judy
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Judy Moses
Carnegie PA
Original Message:
Sent: 11-04-2022 09:30
From: Brett Temple
Subject: OHS of husband
You are most welcome, Judy. Please keep us all posted on your husband's progress, and yours. You'll find, as I have, that this is a very caring and sharing group and there is always a helping hand and encouraging word whenever you need one.
All the best,
Brett
Original Message:
Sent: 11/3/2022 6:16:00 PM
From: Judy Moses
Subject: RE: OHS of husband
Thank you all and especially to you Brett for continuing the very forthright sharing and conversation. So true that this is aspect of recovery is so very important but not considered that important by the medical profession for followup care. Lisa you are so correct in your comments. I asked very early on, where are the support groups. I was told maybe you should check with cardiac rehab, they may know something. (dead end)
I wanted to bite my tongue when I continued to hear from the visiting nurses," you've been hit by a truck, of course you are going to feel low!" I am not even sure how I found Mended Hearts other than by desperately googling every day. No Pittsburgh hospital had any information on their websites.
Finding the right clinician was not an easy task, no return phone calls, not taking new patients etc. Thankfully, I did find a really compassionate clinical psychologist through a friend of a friend that happened to be a nurse.
Thank you Brett for your kind words. Prayers to you and your wife and to all. I so appreciate the sharing.
Original Message:
Sent: 11/3/2022 5:04:00 PM
From: Brett Temple
Subject: RE: OHS of husband
So true, Lisa. Thanks for sharing.
Original Message:
Sent: 11/3/2022 3:30:00 PM
From: Lisa Johnson
Subject: RE: OHS of husband
HI all,
I am a psychiatric nurse practitioner and I am so saddened that far too many recovering heart surgery patients are sent home without the benefit of understanding the issues that go beyond the physical. Mental health is the one area of medicine that has been treated like the stepchild of medical care. So many docs and nurses dont fully understand all the nuances of mental wellness, they focus so much on everything below the neck. i encourage anyone going thru this to reach out and ASK to speak with a qualified practitioner, it may not be offered without your request. As a post surgical patient myself,I truly understand the absolute need. i would be more than happy to listen. Take good care.
Original Message:
Sent: 11/3/2022 12:25:00 PM
From: Brett Temple
Subject: RE: OHS of husband
Agree totally, Clara. My wife and I were saying the same thing. They should have psychologist or some other mental health professional speak with the patient and their caregiver post surgery to let everyone know what to expect and give them the tools to deal with it in an effective and positive manner.
Original Message:
Sent: 11/3/2022 11:10:00 AM
From: Clara Spiegel
Subject: RE: OHS of husband
I so agree with you when you said " Too few cardiologists and nursing staff prepare their patients and caregivers for the changes in a person's personality and mental state post surgery, at least mine didn't. I don't understand why but it seems to be a common situation among heart patients and the medical staff. It seems to me a mental health intervention staff could be of use.
Original Message:
Sent: 11/3/2022 10:40:00 AM
From: Brett Temple
Subject: RE: OHS of husband
Hi Judy. I, like your husband, was fortunate to have an amazing spouse/caregiver post OHS surgery. I truly don't know what I would have done without my wonderful wife to take care of me and help me through it. It's interesting that you touched on the one thing that I believe isn't talked about nearly often enough and that is the phycological trauma arising from OHS. Too few cardiologists and nursing staff prepare their patients and caregivers for the changes in a person's personality and mental state post surgery, at least mine didn't. I was always very much a positive-mental-attitude kind of guy but after surgery I was dealing with massive anxiety, depression, nightmares, etc. All of the things you mentioned. That is actually how I found Mended Hearts. I knew something wasn't right and had changed within me and knew that I needed to talk with someone who understood what I was going through. I started searching online for a support group and that's how I found MH. I would go as far as to say it saved my life. Please pass on to your husband that with time it does get better and that he will get through it both physically and mentally. I encourage the both of you to stay plugged in here and don't hesitate to ask questions and to share how you are both feeling. It makes a huge difference.
Praying for you both.
Best regards,
Brett
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Brett Temple
Project Manager
Castleberry AL
Original Message:
Sent: 10-28-2022 10:44
From: Judy Moses
Subject: OHS of husband
Hello all:
I am a new member and spouse/caregiver. My husband had cabg6 late august. As most of you conveyed who had this procedure, it came as a shock, no symptoms preceding surgery etc. Although I have an understanding of medical information since I was a coronary care nurse many decades ago, everyone who is involved with this situation understands how unbelievably terrifying and stressful and painful the ordeal is for our loved ones as well as terrifying and stressful for their spouse or caregiver. As a spouse and caregiver , the tears are held back daily until you observe the remnants of a pre surgery personality appearing again.
The discussions I have read are amazing, bringing light to the various difficulties in the recovery phase. The discussions related to mortality, nightmares, sadness and depression are so on point and the comforting responses are beautiful. Also, the intermittent rapid pulse or increased blood pressure causing profound fear, should we go to ER, call the Dr is an ongoing experience during recovery. Thankfully my husband started cardiac rehab yesterday. I am thankful to God that my husband is still with me and thankful to the medical team who cared for him. He is recovering well, although he doesn't always believe that.
I just wanted to convey how grateful I am for this platform and for all who so freely participate and respond so compassionately. It has been so very helpful to me and I have encouraged my husband Joe to join.
Blessings to all,
Judy
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Judy Moses
Carnegie PA
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