I was diagnosed with a bicuspid aorta valve in
2005 before surgery to remove a cancerous tumor. Two percent of the
population are born with the bicuspid valve. A normal aorta valve has
three leaflets as opposed to the split in two bicuspid. I was told by my
Cardiologist it would probably need replacing by the time I was 60
years old. I was 49 at the time.
By the time I was 54, I was having trouble breathing more than usual. A
heart cath showed good arteries but the valve needed to be replaced
before heart damage occurred. Calcium buildup and hardening of the valve
caused it to leak making the heart work harder.
Heart Surgery was scheduled for May 26 2011. The surgery itself went well and I was out of Glenwood Regional Medical Center in West Monroe La. eight days later on June 3rd. I started running a fever within two days after being home. Low grade fever can be common with surgery like this. I was told to contact the doctor when it was 100 or higher.
6 days after being released from the Hospital on June 9th I had a follow up appointment with my Cardiologist. I only saw his Nurse. I told her that my fever was getting higher every evening. I was sent for Blood work. Four days later, I still hadn’t heard from them so I called. I was told of abnormal results from the first one and to get a second one done. A day or two later I was told to get a Blood Culture and CT-Scan. I went to Morehouse General Hospital for this. It takes five days for a blood culture to run. I started calling to get the results and was told the one who reads them wasn’t there one day and several other excuses later. I left a voicemail with the head nurse. I never received a callback. I had my own doctor in Bastrop get the test results. My Blood Culture was negative and the CT-Scan showed fluid in the lungs. My Mother talked to him about it later at the Hospital. He said he wasn’t aware of what happened.
My fever was 103.5 July 2nd on a Saturday. We went back to the Glenwood ER. I was admitted to the Cardiac Floor once again. I had CT-Scans, Blood Work and Blood Cultures done. They were giving me Anti-Biotics before they knew what I had. I was later diagnosed with Nocardia, an infection that can be hard to get rid of and can come back days, weeks or months after treatment.
Before the Blood Culture came back positive. They pulled fluid out of my lungs to check it for the infection. I had been unable to sleep lying down since surgery. I was told to keep breathing with the Incentive Spirometer. It didn't seem to be working. They pulled 700ml of fluid from the bottom of my right lung. They were surprised, I wasn't. I was literally drowning in fluid.
I was given Zyvox for the Nocardia, an Anti-Biotic in IV form twelve hours apart twice a day. This would be for 5 weeks. I was to have a Home Health Nurse assist me at home with the IV. I was wearing Anti-Embolism Boots in the Hospital that were air pump powered and I really didn’t notice what was happening to me or my legs. I was discharged July 15th. At home I noticed I was laboring to breath and after getting my short pants on I realized my legs were twice their normal size. I couldn’t even raise my lower legs sitting in a chair. I showed my Home Health Nurse my legs. You could bury the first section of a finger in my leg. I weighed 242lbs. About 30lbs more than I weighed when I came in.
I went back to the Glenwood ER July 16th and I was admitted to the 6th floor on July 17th. I was diagnosed with Acute Renal Failure (Kidney) and would be getting Kidney Dialysis in the future. Cornerstone Hospital was recommended to me, but I chose the Long Term Acute Care (LTAC) part of Glenwood on the third floor. The doctor that released me was also given a little talking to by my Mother when she caught up with him for releasing me in that shape. They didn’t know if my Kidneys would recover or not, but I was told there was a chance. I was admitted to LTAC July 19th.
One of the first Anti-Biotics I was given on the Cardiac Floor on my second visit was Vancomycin. Known to be hard on Kidneys. The CT-Scan also uses an Iodine based dye. Also very hard on the Kidneys. I suffered from Acute Renal Failure not long after. My Kidney Doctor told me he thought the infection caused it. I never saw any proof of it. I believe the Anti-Biotic and CT-Scan dye too close together caused it. I had a temporary port put in and had Dialysis five straight days. I found out much later I was in Heart Failure from so much fluid around my heart. They didn’t tell us about that.
I started getting Dialysis and averaged 14 lbs of fluid pulled three days in a row. A total of 48 lbs was pulled in five days. I was very weak and had lost a lot of muscle strength in the process, The Therapists in LTAC had to help me walk again. I had three more treatments on a Monday, Wednesday, and Friday before being released. It was a schedule I would have at the Dialysis center in Bastrop. Kidney transplant options were discussed with me as was a permanent dialysis port.
My Kidney function had went from 3% to 7% to 14% and was at 20% when I saw a Kidney Doctor. He said he could keep me off Dialysis but I may need to take fluid pills. I was given the pill form of the Zyvox Anti-Biotic and had 14 more days to take them (28 Pills). I was discharged days later on August 4th. My Kidneys have since recovered.
I started running a fever about three weeks after the last of the Zyvox Anti-Biotic pills. I went to my Doctor requesting he find me an Infectious Disease Doctor, regardless of where they were located. One worked out of St. Francis Hospital in Monroe and that’s were I was admitted September 2nd. I was given Bactrim, a Sulfa Based drug in pill form. One Blood Culture showed Nocardia, then another one showed Actinomyces. They finally sent my Blood to the Mayo Clinic where it came back as Nocardia.
I was back taking Bactrim which is what the Infectious Disease Doctor told me I should have been taking for Nocardia from the start. I was given three units of blood while in St. Francis because of my low count. I asked for Procrit once again and my Cardiologist said I didn’t need it. That was right right after I received the blood. An MRI showed three spots on the back of my brain. My Cardiologist and Infectious Disease Doctor suspected the infection was on the new valve and part of the infection (Vegetation) came off and went to my brain.
The Bactrim I’m taking is keeping the infection inactive. Because Nocardia can come back days, weeks, or months after treatment, it isn’t worth the risk to take me off Bactrim to see if the infection is gone because it could return quickly and cause big problems if more pieces go to my brain. Doing blood cultures every 2 weeks for an unlimited time wasn’t an option I wanted to try. Bactrim is cheap. Zyvox was expensive. The spots are on a section of brain that controls balance. Thank God it hasn’t affected me. I will take Bactrim for life or until the valve gets replaced again. Something I’m in no hurry to do if the valve stays in good condition.
I was discharged on September 14th. I was still very anemic and my Red Blood Cell count and Hemoglobin were steadily dropping with each blood work. I was released from LTAC with Iron Tablets and was supposed to get Procrit, a Red Blood Cell stimulating drug. It wasn’t arranged to have me get Procrit once out of LTAC. I ran into a RN friend of mine who mentioned B-12 Vitamins. I knew I had Procrit, Iron Tablets and B-12 shots getting Radiation and Chemo during Cancer treatments. I was told by my Cardiologist either my body or the infection was (Eating) my Red Blood Cells. To start with it made sense, but when the infection was inactive, it didn’t make sense.
I started taking a 2.5mg B-12 in the morning and one in the evening. Within a week, I could tell the difference. My energy was coming back. Within three weeks I was ready to go back to work. I went from moping around like a Zombie to being hyper. My Red Blood Cell count and Hemoglobin has went up on my last Blood Work as well. B-12 is a miracle Vitamin, but it took the advice of an RN to help me, not one of my Doctors.
My Cardiologist suspected the infection was on the valve when transplanted. My RN friend worked in Heart Surgery and said it wasn’t likely since she had seen the prep procedure which included an Electron Microscope scan before prep and after the valve was processed. The Infectious Disease Doctor didn’t think the valve was infected from the start. I told my RN friend Sharon I got infected somehow. I didn’t get Nocardia in my Lungs or through an open sore. If it wasn’t the valve were did it come from? She said probably the central line I had. I’ve since read a lot about Central Line Associated Bloodstream Infections (CLABSI) including Nocardia from a central line. I told the Infectious Disease Doctor that I thought the infection probably came from the Central Line. He said that most Central Line associated Nocardia stopped when the line was removed. I told him I either became infected from the valve or the Central Line, that I’m sure of.
I think the world of all the nurses and nurse assistants I had in both Glenwood and St. Francis. I had one nurse twice in the Cardiac Section of Glenwood. She is now a Facebook Friend. My Second Cousin Haley Dye was working in the ER at Glenwood when I came in. A friend of mine from Bastrop working for Med-Life Ambulance rolled a stretcher by the ER when I was in it. I talked to him briefly. On the 6th floor My Aunt Francis had her Gall Bladder removed and was in the room next to mine. I wasn’t able to walk over to her room because of being hooked up to an IV and way overloaded with fluid. On the LTAC floor one of my nurses was my Brother Steve’s first Girlfriend who is also a Facebook Friend. A friend of mines ex wife works there, and several employees were from Morehouse Parish including a nurse I had one day.
I remember all my nurses right after Heart Surgery. I only remember a nurse and assistant the second time. I remember Patti and Minnie who were my Nurse and Asistant Nurse right after Heart Surgery. I was really out of it.
I also think the world of the Therapists that had me walking as well. I watched other people walking, some of which had been unable to for months. I was impressed. I have two of the Therapists on Facebook as well. Several of the nurses and all my Therapists seemed to go beyond just doing their job. They were very friendly and I would get answers to questions I asked. I consider them my extended family now, and told them they won’t easily get rid of me:-)
Thanks to all my Doctors and Medical Technicians, X-Ray, CT Scan, etc.
I also think a lot of Dr. Donias who was the Heart Surgeon and his Physicians Assistant, Karen.
Dr. Donias is a California native like me.
The emotional hit from first finding out I had an infection that was hard to get rid of, and then Kidney Failure was hard to take.
The Grim Reaper has come for me twice and left empty handed. Once in 2005 after nearly bleeding to death from the ruptured Tumor, and the last time when I was in critical condition and in heart failure from fluid around my heart. I'm hoping I'm part Cat and have 7 lives left:-) They say what doesn't kill you makes you stronger. I should be pretty strong now.
May 26th admitted to Glenwood Regional Medical Center
June 3rd discharged from Glenwood Regional Medical Center (8 Days)
July 2nd admitted to Glenwood Regional Medical Center
July 15th discharged from Glenwood Regional Medical Center (14 Days)
July 16th admitted to Glenwood Regional Medical Center
July 19th discharged from Glenwood Regional Medical Center (4 Days)
July 19th admitted to Glenwood LTAC
August 4th discharged from Glenwood LTAC (17 Days)
September 2nd admitted to St. Francis Medical Center
September 14th discharged from St. Francis Medical Center (13 Days)
43 Days in Glenwood
13 Days in St. Francis
56 Days in Hospitals since May 26
I went back to work 1 day short of being off 5 months.