still trying to understand what happened

[regor]

This is for CCF-M.D.-RCJ.

Last May you answered some questions I had regarding the death of my 21-year old stepdaughter from CHF just over a year ago (see “trying to understand what happened,” 5-21-04). You were most helpful in shedding much light on what happened, but now I have a couple of more questions.

The first night she was in the hospital she experienced severe hot flashes even though her body temp was 96. This was followed by a mild chill, with her legs covered in goosebumps. The nurse on duty tested her blood sugar and found it to be high enough to warrant insulin (not given), even though she had had no previous problems with blood sugar that we knew of. About an hour before her CR arrest in the ER nearly 3 weeks later, she had similar hot flashes. Afterward, when she was on life support, I again saw those same goosebumps on her legs. Other symptoms throughout the period included a persistent dry, hacking cough that got worse when she lay down (forcing her to sleep sitting up), and red spots or splotches in her complexion.

The records from the workup previous to her being put on the heart transplant list showed her to have been in CHF and to have had passive hepatic congestion of the liver at least 6 weeks before her death. I’m wondering how these symptoms may relate to her heart failure and/or the congestion in her liver?

[CCF-M.D.-MJM]

Regor,

I am sorry to hear about your stepdaughter.  RCJ has moved and is greatly missed from this forum.  Please allow me to answer your questions.

The body produces adrenaline (epinephrine) in response to stress.  It is likely that as her heart failure progressed, she was increasingly dependent on adrenaline to maintain her heart function to support her life.  Surges of adrenaline can cause goose bumps and also makes your blood sugar increase.  It is also not uncommon to have associated chills or even a tremor.

The dry cough and inability to lay flat were caused by congestion of blood in her lungs.  Her heart was no longer able to pump blood adequately and cause a back up of blood in her lungs and extended to her liver.  The liver and lung symptoms are related because the venous system extends contiguously from the lungs to liver often associated with swelling in the abdomen and legs.

I am uncertain as to the cause of the red splotches.

I hope this helps.

[regor]

Thank you, this is most helpful. Now I have one more question, which gets to the heart of what I’ve been trying to find out. This question may also be unfair or out of line, but I’ll leave that determination up to you. First a little background:

The first time we took my stepdaughter to the ER she was diagnosed with pneumonia, which seemed very strange because she had no fever. Nothing was said about CHF, even though they knew she was on the transplant waiting list. The records of her transplant evaluation (from another hospital), which showed her to have been in CHF weeks before, were sent to her cardiologist, who was out of the country for the entire month and so never saw them. The hospital sent her home two days later with a 10-day prescription for antibiotics. This was over our protest because we had no explanation for the symptoms (now explained by you) we had seen, but felt they must be related to her heart condition.

Four days later swelling appeared in her feet and ankles. Sure that it was CHF, I brought her back into the ER. The ER physician denied it was CHF and, insisting the swelling was not related to her heart at all, sent her home again. 12 days after that, when the symptoms grew worse, we brought her into the ER for the 3rd time in 2 ˝ weeks. Told the pneumonia had returned, she received only antibiotic therapy in the ER. 11 hours after we brought her in, still waiting in the ER for a regular room to open up, she arrested.

Now my question: given what the transplant evaluation and autopsy (see my May 21 posting for details) revealed, short of an immediate transplant, could the outcome have been any different even if the CHF had been properly diagnosed and treated?

[CCF-M.D.-MJM]

I wouldn't feel right second guessing patient management, especially without seeing all the information they had available at that time.  Again, I am sorry for your loss.