Gloria’s Mismanaged Patient Expectations

By Adam Pick on October 10, 2008

Every few days, I receive a detailed email that illustrates just how poorly patients can be prepared for the realities of cardiac surgery.

Case in point… Gloria just sent me a disappointing note about her double valve replacement (aortic, mitral) and valve repair (tricuspid). My face soured and my frustration level soared as I read about each-and-every problem Gloria encountered in the hospital and during her early recovery.

 

Frustration Dealing With The Medical System Prior To Heart Surgery

 

With Gloria’s approval, I am posting parts of her email below to help future patients and caregivers avoid several of the unnecessary pitfalls of heart valve surgery.

Hi Adam,

Several months before surgery was an option, I went into atrial fibrillation.

After a second opinion, I had heart valve surgery last October. The complex surgery was a double valve replacement – my aortic was replaced and mitral valve was replaced plus my tricuspid valve was repaired. I also had a maze done.

The surgeon let met decide if I wanted a porcine valve (pig), a bovine valve (cow), a human valve, or mechanical valve replacement. Since I’m 59 years old, I was concerned about using a mechanical valve, so I opted for a cow valve.

Since I had three C-Section babies, I was prepared for the pain. However, I was upset when I awoke in the ICU because the ventilator tube was still in. The medical team told me that once I could breathe on my own, the uncomfortable tube would come out… But, it didn’t. I paniced. I tried to communicate with the nurses to tell them, “I can breathe take this thing out”.

The ICU nurse thought I was going to rip the tube from my throat, so they strapped my hands and arms down. My family came in at that exact same time. “Please someone help me!” was all I thought. Finally, my husband asked me if he should leave. I blinked once for “Yes”. I had to concentrate on letting the ventilator do its job.

The following day I was up and walking around. One of the hospital staff came into my room and asked, “Where is Gloria?” I said, “I’m Gloria.” He couldn’t believe that I was the patient from the day before.

The next ten weeks I experienced pain all over – especially my back. Thank goodness the pain came in sections (not all at once), shoulders, ribs, etc. I also had a small amount of fluid in one lung.

I also needed the full-time care and support of my family. I could not imagine staying at home alone as my husband travels extensively. So, my sister and her husband came-in from the Florida Keys to stay with me while he was gone. I thank God for their support.

As for being depressed, cardiac depression really hit me. I could not believe all this pain and discomfort was happening to me. After my sister left, my in-laws were of great help. They “checked-in” on me, took me out to dinner, or just spent time with me.

Thank you for listening, Gloria

In review of Gloria’s email she identifies at least six mismanaged, patient expectations. That’s just not right! I hope you take the time to ask the right questions, interview other patients, learn through this blog or read my book to help you better prepare for the known and unknown issues leading up to your heart surgery.

Keep on tickin!
Adam


Written by Adam Pick
- Patient & Website Founder

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.


cynthiaedwards2@yahoo.com says on October 10th, 2008 at 3:00 pm

We also had no idea how much care my mother would need after her surgery. The surgeon had originally said that she would go to a nursing home after the hospital. But once she was ready to be released from the hospital, they told her she wasn’t sick enough for a nursing home!

My father is disabled so she couldn’t go home. At this stage she still couldn’t even rise from a chair or toilet seat unaided and caring for herself or anyone else would have been 200% out of the question. It was extremely fortunate that I live nearby and was able to take her in. However her care consumed a huge amount of my time and energy. I work from home and again, this was simply fortuitous. Without that boon I could not possibly have taken care of her during her post-hospital recovery.

None of this was clearly spelled out to us. I think the surgeon is just so familiar with the process he doesn’t realize how much more detail patients need BEFORE the procedure.



Mary Ferraro says on October 10th, 2008 at 3:28 pm

That system that released her is broken. How do we fix this? I do not know. Things have to change.

Ever since I got my job and could just about afford it, I’ve been paying over $200/month for long term care insurance because I live alone and am a heart patient. Now, years and years have gone by and I’ll have 2 valves repaired 10/27. Anybody out there have some advice on how do I get the help I’ll need? What if they decide I’m not “sick enough” to get help? Is there any right to appeal? Scared enough already but still not in panic. Gotta keep positive thoughts. Any advice?



Mrs. Ron kepler says on October 10th, 2008 at 7:55 pm

This sounds alot like Ron’s experience. His bovine aortic valve replacement was 8 -08-08 in BHam. Another thing we really struggled with was, Ron not being able to lay down @ home to sleep. Please tell others that when they leave the safety of the hospital, be prepared to sleep in a recliner for awhile. We don’t have a recliner, but our church family supplied our every need. The broken sleep patterns were very difficlt for Ron & I, his care giver. His depression hit & I am experiencing post tramatic stress now. Ron is doing fine now & enjoying his re-hab at
Hartselle Medical Center.



fazilat says on October 11th, 2008 at 8:42 am

i went in prepared info wise but no one can really tell you the level of pain you will feel i am 5 months post op and still suffer from pain and i am taking strong pain killers you need to be prepared in receiving help as you are very tired and the lack of movement is very frustrating, if you do not have a recliner you can make a mountain from duvets and pillows that is a must ,sleep is difficult as you are not used to sleeping on your back plus getting out of bed is a mission. if you can then for a least a month after op you should have someone with you and the more you can move freely then you can try to catch the threads of your life again no one tells you these things that’s why i find these blogs so good for sharing good and bad, thank you Adam.
p.s i thought the same as Gloria i have had 3 pregnancy’s, 1 a twin delivery breech so i thought pain would be a breeze but not at all,lol. fazilat



Adam Pick says on October 11th, 2008 at 4:35 pm

Fazilat,

Thanks for the thoughts… especially about the use of make-shift recliners. 🙂

Curious though… Your five months post-op and still taking pain killers? Are your doctors still prescribing? It seems that most of your pain should be gone by now. I don’t want to think the Vicodin has created an unwanted addiction.

Let me know,

Adam



Dee says on November 27th, 2008 at 6:25 pm

I have nothing but compassion for Gloria after reading that. Not only did I feel for what she was going through immediately after surgery, but I think that the pain she experienced for weeks following her return home really hit home. My brother didn’t have that type of surgery, but had a quadruple bypass. I flew out to him and spent a week with him after he came home. I was by his side every night and slept when his wife woke up. All in all, I just want to say that I can’t completely relate to the exact surgery and it’s repercussions during the healing process, but I can relate from seeing someone close to me experience the type of pain during the immediate aftermath of having heart surgery.


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