There is no good time to be hospitalized. Generally, weekend nights are the worst times to go to an emergency room. During my recovery, I have needed to visit the emergency room on three weekend nights. Those experiences led me to delay my final emergency room visit until a Monday.
On weekend nights, the Tampa Bay Hospital Emergency Room is in full gear. On Friday April 9th, I contacted the on-duty physician’s Assistant (PA) at about 8:00 a.m. In the month of April, I had become alarmed by the steady elevation of my sugar readings. My diet had not changed. I still maintained a no-sodium, no salt, low sugar diet. However, as the chart below shows, my need for more powerful insulin injections was consistent.
At about 6:00 p.m. I had noticed a rise in body temperature. The first time I checked my temperature it was 100 degrees. By 8:00 p.m. the reading was 101.5. The TGH heart transplant booklet requires patients to call when their temperature tops 100. I called the PA and was informed to try Tylenol.
Usually, the physicians do not want patients to take Tylenol-type medicines because they mask the symptoms. The PA and I agreed that Tylenol made sense because the rise in temperature had happened so quickly. My typical body temp was about 97.5, so 101.5 marked a significant rise. With the amount of steroids I was ingesting, the temperatuire was alarming.
I was having difficulty breathing and felt punk. The second call to the PA was about 10:30 p.m. It was time to check-in to the ER. My temp was now over 102 and showed no signs of easing.
After checking my vitals, I was checked into a heart transplant recovery room on the eighth floor. I do not remember what happened next except that in a blink of the eye an intravenous line was sunk and I was on liquid medication. I had taken my regular battery of medicines at 9:00 p.m.
I believe I was sent for an x-ray. From a sick patient’s perspective, the x-ray department at TGH was always outstanding. The staff was efficient. Services were rendered quickly with a careful eye on the patient’s comfort level. I now realized I was sick. This was more than a cold.
To my surprise and embarrassment, Dr. Hoffman appeared at my bedside in the middle of the night. I felt badly that her Saturday night had been interrupted. I conveyed this to her. She responded with words to the affect that this was what she did.
Dr. Hoffman’s arrival was somewhat bittersweet. I was very glad and comforted to see her. I had not expected to see a cardiologist until at least the next morning. That night, Dr. Hoffman was a beacon of strength and commitment. My respect and appreciation for her rose even more. But, at the same time, her arrival signaled that something was up and it just might be something serious.
As you can see from the chart below, I was pretty meticulous about recording my readings. In addition to my list of medicines, I also maintained a regular vitals log. Each morning, I took my blood pressure, weight and pricked my finger to see what amount of Novolog was needed to combat the diabetes inflicted as a result of the steroid intake.
As Suzanne was needed at home, I was home alone in Tampa Bay. At this point, I still had a fungal pneumonia in my left lung for which I was taking the powerful V-Fend to control and contain the mold. I had been advised by the cardiology clinic that my existing conditions were improving. I was experiencing all the symptoms of rejection.
Dr. Hoffman informed me that I now had contracted a bacterial pneumonia in my right lung. Frankly, I was relieved because it was not rejection. However, things quickly turned badly.
When I left TGH after the transplant I weighed 178, about 7 pounds under my “playing weight.” As my chart indicates, I was struggling to sustain a weight of 160. I felt and looked like skin and bones. After I checked in, my weight fell even further. At one point, I tipped the scales at 149 lbs. I was now encountering chronic myopathy and neuropathy.
Things were not going well. I lost strength in my legs and was unable to walk. This caused all the discomforts of being bedridden. Bowel movements were so embarrassing that I forced myself to get to the bathroom with the help of a nurse. I was never good at urinating into the container but did the best I could. Bed sores arose and required daily care.
The TGH nursing staff was great. However, the door opened every morning at 4:30 a.m. in order to the measure blood pressure, weight and heart rate. From that early hour on, it was impossible not to feel like a guinea pig or voodoo doll of sorts. Countless blood draws, five insulin injections per day and the intravenous feed became old very quickly.
Over the next few weeks, I received plenty of attention. The infectious disease people were tight-lipped. I received no clear explanation for why I was so weak and losing weight. Had it not been for the comforting presence of Dr. Hoffman, who I looked forward to seeing every day, and the care of a wonderful psychiatrist, Dr. Krans-Noble, I would have been as agitated as someone in my state of decay could become.
While it was apparent that a clearly stated diagnosis was not forthcoming, Dr. Krans-Noble managed to inspire me to think about bouncing back. I think I owe what sanity I have now to the good, patient psychiatrist. She was always willing to listen. Dr. K-N had become and would remain an important part of my recovery and I would recommend regular psychiatric visits to anyone in the transplant program, including those in the waiting list. Sometimes, a professional voice of reason can overcome the anxiety that is part of most transplants. In my case, Dr. K-N was always a dependable pillar of strength and wisdom. TGH is fortunate to have her.
Good listening skills did not depict my experience with the Infectious Disease (ID) Department at TGH. Everyone seemed tight-lipped. After two plus weeks at TGH and numerous tests, x-rays and CAT scans, the Infectious Disease department was still unable to make a diagnosis. To me, they seemed frustrated with my case. My confidence was definitely shaken by the lack of a proper diagnosis.
Dealing with the ID physicians, I came to realize the need for an advocate. I needed Suzanne or my daughter Abbi, who has the determination of her namesake Abigail Adams, but both were needed at their homes up north.
When it appeared that my pneumonia was under control, I would be sent to in-patient rehab, where Dr. Hoffman informed me that a diagnosis was not complete. Apparently, at one point, the Infectious Disease people would not rule out Lou Gehrig’s Disease. I was glad that was off the table but remained uneasy about the “best guess” that my deterioration was being caused by my inability to tolerate the only remedy for aspegillius mold, V-Fend.
That is a different story for another day.
|04-01||0715||110 – 80||105||160||97.4||238|
|04-02||0534||161 – 102||101||160||97.6||250|
|04-03||0841||131 – 80||104||160||97.5||238|
|04-04||0700||146 – 95||107||161||268|
|04-06||0830||157 – 97||110||160||97.8||440|
|04-07||0800||154 – 92||98||159||98.3||178|
|04-08||0830||152 – 85||102||159||97.9||210|
|0700||165 – 101||131||157||98.6||171|