Rita’S Story

By Eugene Johnson

This is the true story of a young womans fight to survive, and try to live as normal a life as possible despite her medical problems. When I met Rita she was a single mother, held a full-time job, and lived as though nothing was wrong in her life. She taught me not to dwell on the problems that we have no control over, but to look forward to the wonderful world that we live in. She was, and always will be The Wind Beneath My Wings!

• Language: English
• Publisher: AuthorHouse
• Release date: Oct 17, 2017
• ISBN: 9781546212744

Eugene Johnson

I was raised on the near eastside of Indianapolis with seven brothers and two sisters. By the time I turned 23 I had lost a sister, a brother, and both of my parents. Tragedy seemed to be the normal in my life, but with God beside me, I always keep a smile on my face and hope for the future. By turning my problems over to God I survive and prosper. Enough about me, this is the story of the most courageous person that I’ve had the pleasure to know. I thank God for bringing her into my life.

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October 26, 1957 – July 23, 2013

Rita was born on the west-side of Indianapolis, the fifth child in a family of eight children (five boys and three girls). Rita’s childhood seemed quite normal, although she was always tired and much weaker than her siblings. At the age of fourteen, Rita’s parents took her to the Hospital. After several tests, it was determined that Rita had Ulcerative Colitis. At that time (maybe still) she was the youngest person to have ever been diagnosed with this disease. Not a way to get into a record book that anyone would want to pursue. Rita’s family was informed at this time that Rita would not be expected to see her 18th birthday. In her teens Rita worked at Linder’s Ice Cream where she met Dickie, who would become her 1st husband.

Rita graduated from High School in 1976, and soon after married Dickie. Dickie was in the Navy when they married, so Rita moved to Virginia, to be with her new husband at the Naval base. At this time her Gastro-Intestinal Doctor explained to her that he did not expect her to ever see her 21st birthday, or for her to ever consider having a child, as childbirth could cause her death. This marriage ended after a few short years. Rita’s younger sister (Dionne), who was an unwed mother, had Rita move in with her, to help raise her son. Rita was staying home to take care of her nephew while Dionne worked and supported them. A year later Dionne was hit head-on by a car while riding a bicycle. Rita and Dionne’s son moved in with Rita’s parents while Rita found a Job. Dionne did survive the crash, but was left unable to walk, and with quite a bit of memory loss and mentally slower.

Over the years Rita had several jobs, and it was at one of these jobs that she met Brian while training him for the job. They fell in love and got married. In January of 1984 Rita gave birth to the son (Dustin) that she was never to have. A year later she had a full hysterectomy performed while she was in surgery for a Subtotal Colostomy Terminal Ilectomy with Primary Ileorectal Anastomosis. This surgery removed all except 10 centimeters (approximately 4 inches) of Rita’s large intestine. At 30 years old, Rita had her Gall Bladder removed, and at the age of 31 she had surgery for a Small Bowel obstruction. A few years later Rita and Brian were divorced due to his unfaithfulness.

I met Rita on November 24, 1991. We stayed in touch for several months and started dating in April of 1992. In June of 1992 I took Rita on her dream vacation, a week-long trip to Cable Beach, Nassau, Bahamas. In August of that same year Rita fractured her left foot and was off work, so we took our children and her nephew (Dionne’s son) on a week’s vacation to Florida. We stayed with her sister and her fiancée just south of Ocala, Florida. From there we went to North Beach in St. Petersburg, Florida, Ormond Beach (just north of Daytona Beach), Daytona Beach, Universal Studios of Florida, and a waterpark in Orlando, Florida named Wet & Wild. It was a very great week!

In June of 1993 Rita and I decided to move in together, and rather than live in either of our homes we decided to have a new home built. After our homes were sold we lived with Rita’s mother, and sister (Dionne) until we were able to move into our home on December 11, 1993.

In April of 1994 I asked Rita to marry me, which she said that she wanted me to talk with her Gastroenterologist (Dr. Almone). Then, if I still wanted to propose that she would answer me, but not until I talked with Dr. Almone. In May of 1994, I went with Rita to see Dr. Almone, and he explained (in great detail) Rita’s heath issues to me. Dr. Almone has been with Rita since right after she was diagnosed with Ulcerative Colitis. Dr. Almone also explained that Rita’s current diagnoses was Chronic Ulcerative Colitis, and that her prognosis was less than 5 years of life remaining. He said that if I could handle being widowed in 5 years or less, then by all means propose again. I proposed to Rita the second time in Dr. Almone’s office and she said - YES!

On June 2, 1994 Rita and I were married in a very small ceremony at our Church. On June 4, 1994 we went on our Honeymoon aboard Carnival Cruise Line’s, Celebration Liner. Rita said that Cruising was her ultimate vacation, and she hoped that we could go on more cruises in our future. We have in fact gone on a total of 11 cruises, which included a 12 day Hawaiian Cruise, and all of these vacations were aboard Carnival Cruise Line’s ships.

In 1996 at 38 years of age, Rita’s was told that her Chronic Ulcerative Colitis had progressed to cause her to have Primary Sclerosing Cholangitis. Primary Sclerosing Cholangitis is a disease in the bile ducts in the liver. This disease causes scar tissue in the bile ducts, and hardening of the bile ducts. This will eventually lead to liver failure. In 1997 and again in 2000 Rita had to undergo surgery to remove adhesions (scar tissue) that were growing around her pancreas and small intestine. Although both operations were successful they only lead to the growth of more adhesions.

In 2002 at 44 years of age Rita was having difficulty processing her food. After she ate breakfast, her stomach would not empty enough for her to eat more than a bite or two of her lunch, and only about half of a small supper. The gastroenterologist that she was seeing at that time did a test on her to watch her digestive system. In this test Rita ate some nuclear eggs, and they watched how quickly her stomach emptied. It was determined by her gastroenterologist that Rita’s duodenum was not working correctly and needed surgery to bypass the duodenum. In this surgery Rita’s stomach and small intestine were connected directly together bypassing the need of her digested food of going through the duodenum. Rita was sent home a few days after the operation even though she still complained of discomfort in her abdomen. That weekend we attended Dusty’s White Stag Leadership ceremony of his last year of being a teen instructor in White Stag which is a training course in the Boy Scouts of America. Immediately after the ceremony, I rushed Rita back to the Hospital. They called in a staff of surgeons and performed an Exploratory Laparotomy. I was informed that they removed some adhesions from around Rita’s small intestine that seemed to be quite old. Rita remained in the Hospital for a month following this surgery, and was finally sent home after the insurance company agreed to a visiting Nurse and home IV feedings. After Rita was doing better we attempted several times to contact Rita’s Gastroenterologist only to be informed that he left the Hospital and they would not give us a forwarding address. It was six years later that I found (due to another surgery) that Rita’s duodenum was working quite well and that the bypass was unneeded surgery. It seems that the adhesions were the culprit the whole time, and Rita was misdiagnosed, and the Hospital covered it up.

In 2005 Rita had a procedure for a Bulging Disk and Disk Tear between her L4 and L5 vertebrae. On February 28, 2007 Rita had Lasik Eye Surgery to correct her vision. While it did help for a while she got to the point where she needed glasses again, and now had problems with dry eyes.

In March of 2007 Rita had to go on sick-leave from her job due to severe abdominal pain and queasiness. At that time I had Rita sign up for SSA Disability, which of course was denied. We ask for the denial to be overruled and was denied a second time. After that denial we contacted an Attorney and 2 years later Rita was approved in court for SSA Disability, which also placed her on Medicare.

In November of 2007 an Intestinal Surgeon at the Hospital informed us that Rita’s problems were from a bulge that formed in her stomach. This bulge was holding her undigested food and in turn the food was rotting in her stomach. On November 13, 2007 Rita underwent Subtotal Gastrectomy with Roux-en-Y gastrojejunostomy. In this surgery the bulge was removed and Rita’s stomach was reduced in size.

In March of 2011 Rita had Cataract Surgery on her right eye, and in September of 2012 she had Cataract Surgery on her Left eye. In July of 2011 Rita had a Medtronic’s Nerve Stimulator install in her spine to help relieve her pain and reduce the amount of pain medication she required. This worked great for a while, but the need to increase her pain medication came back.

Due to the Primary Sclerosing Cholangitis in March of 2012 Rita had a Bile Duct Stent & Backwash Tube installed. This did not give Rita much relief, but it actually seemed to cause her more pain and discomfort. The Bile Duct Stent & Backwash Tube was removed in May of 2012. In trying to control Rita’s pain, her Pain Specialist performed an Abdominal Nerve Block on her in April of 2013. This did give Rita temporary relief.

In May of 2013 Rita was getting weaker and losing weight, not that she could afford to lose any weight as she was already wearing size 1 clothes. After undergoing many tests to determine the cause of her weight loss, it was determined that Rita’s body was not absorbing enough fat from her food intake. Rita was setup for surgery on July 23, 2013 to have J-Tube placed for tube feeding directly into her small intestine.

July 24, 2013 – October 4, 2013

Wednesday — 7/24/2013

Rita went to the Hospital yesterday to have a J-Tube placed in her. Due to massive adhesions the surgery took a little over 4 hours. The surgeon said everything went well, he just didn’t expect so much to do. This was due to the adhesions he had to remove before doing the actual surgery that was scheduled. Rita will be in the hospital for the next 5-7 days for observation, and to slowly start her feeding through the J-Tube.

Friday — 8/2/2013

As of today Rita has started on oral feeding along with the nutrition that she has been weaning on through her J-Tube. Rita is in severe abdominal pain from what she believes to be from the tearing of adhesions getting out of her Hospital bed 2 days ago. I see slow improvement in her condition, and I’m praying for her to be able to come home next week. That (according to the hospital staff) depends on her getting up to full speed of nutrition through her J-Tube, and the reduction of her pain level. As of now Rita is getting nutrition through her J-Tube at 40 ml per hour and she needs to be at 83 ml per hour. Rita’s pain level is still at 8 - 9 out of 10, and the goal is a 4 out of 10.

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Rita was discharged to go home from the Hospital on Tuesday, August 5, 2013

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Thursday — 8/8/2013

Yesterday morning I rushed Rita to the Hospital. She was very weak, had labored breathing, and a rapid heart rate, and was barely responsive. Rita has been diagnosed with severe pneumonia, and has a hole in her intestine allowing anything she eats to flow into her abdomen, which the fear of this is sepsis. Rita was transported (after she was stabilized) immediately into the Respiratory ICU unit at the Hospital where she will remain until the pneumonia is cured. Rita will be taken to Intervention Radiology this morning in an attempt to repair her intestine and drain the fluids from her abdomen without surgery. If this is not possible then surgery will be done, but in Rita’s weakened condition that is a last resort.

Last night Rita was diagnosed with MRSA (aka: mersa) which is a severe, staph infection, and has been put into isolation. Rita is being treated with antibiotics, and pain medicine. Rita had a calm nights rest during the night and all her vitals have stabilized, but not quite normal at this time. When awake, she is responsive to questions by nodding her head, blinking her eyes, or squeezing my hand. She cannot talk due to the breathing tube that was placed down her throat.

As one Doctor stated: Rita is not out-of-the-woods at this point, but instead she is very deep in the woods. Very little hope is being stated about Rita recovering from this major set-back. It is now up to Rita’s ability to fight back, and God’s will.

It’s hard to understand how all of this started 2½ weeks ago as a procedure to insert a J-Tube to improved Rita’s nutrition intake.

Friday — 8/9/2013

Rita had her procedure with Intervention Radiology (IR) yesterday afternoon. Everything went better than expected by the IR team. They were able to drain her abdomen and placed a tube for continual drainage. They also relocated her J-Tube to prevent future problems. It seems that the massive amount of adhesions in Rita’s abdomen contained the abdominal leakage, and prevented it from infecting her to the point of no return. One of the ICU staff told me that normally someone with Rita’s problems doesn’t last 48 hours, but Rita is doing exceptionally well. I told him that it was the Power Of Prayer, and God’s will.

Rita is still deep in the woods! Her pneumonia and sepsis are the biggest problems. Keep praying for Rita’s recovery.

Saturday — 8/10/2013

Rita was alert yesterday, and able to communicate as best as one can with a breathing tube down their throat. Her vitals are in the high end of the normal range, which is fantastic for someone in her condition. Rita’s blood pressure has returned to normal without any medication needed to help raise her blood pressure. ICU did a test on a stool sample for bacteria, which came back negative. They are still waiting on test results on blood cultures taken to show what type of bacterial infection Rita has in her blood (sepsis) so they can treat it with a more aggressive antibiotic designed for that bacteria.

The ICU doctors began intravenous (TPN) feeding at 9:00 PM last night. They are hoping to remove the breathing tube soon. Before that can happen Rita needs to begin coughing, so she can get the fluid from her lungs. She has been attempting it, but coughing causes her great pain. As of yesterday, the breathing tube was only helping Rita breath at 40%, which means that she is now breathing 60% on her own. They (ICU) are continuing to push fluids, antibiotics, and pain reliever (fentanyl) to bring Rita through this crisis.

The staff at this ICU is a fantastic group, and stay on top of every situation. They are the hands that God is using to heal Rita. The fact that Rita has come so far in recovery shows that prayer works! Last Wednesday when I rushed Rita to the Emergency Room I had very little hope for her to recover. Now there is hope! Rita still has a very long way to go, especially with the pneumonia. Until the pneumonia is taken care of, nothing more will be done about her perforated colon. They are draining all leakage from her abdomen, and testing what is gathered. The plan is that while they are fighting Rita’s pneumonia, that the perforation will scar over and surgery will not be required to fix it. No one is positive that this will occur, but it’s the current plan. Every doctor (except the surgeon) agrees that Rita’s condition during her previous hospital stay shows that she had some type of infection, and should have not been released from the hospital last Monday. The surgeon said that he and his staff considered doing a CT scan before releasing her, but didn’t find it to be necessary. The CT scan would have showed both the pneumonia and perforation, as it did when performed at the Hospital on Wednesday when I rushed Rita to the hospital. All of this could have been caught sooner, before putting Rita on the edge of death. Several medical errors and wrong assumptions seem to be what caused this crisis to occur.

Hopefully, with correct medical care and continuation of prayers, I will be able to someday bring my wife back home.

Saturday — 8/10/2013

The C-pap machine has been turned off and Rita is breathing on her own. Her temperature went up, but returned to normal after she had a bath. Her pain medication has been cut in half to 25. Rita is alert and understanding everything. I was standing at her door she looked straight at me I was smiling and waved to her and she waved back. She still craves ice, but understands that she can’t have any. They did start her TPN multi-vitamin and added Azithromycin antibiotic. The results of the X-ray of her lungs that was taken this morning, and her morning labs aren’t back yet. She wants to know about her hands, which I explained that they were swollen and she looked as if she was okay with it.

At 6:40AM her vitals were: Pulse 88, Temp 37.4 (99.3), oxygen saturation 98, respiratory rate 24, and blood pressure 111/66.

Monday — 8/12/2013

Yesterday afternoon Rita had her breathing tube removed from her throat, and is now breathing on her own. At 2:00 PM the Physical Therapist came in and had her sitting up in bed for a short time, then got her up to walk a very short distance, after that they had her sitting in a chair for about an hour. This may not seem like much to a healthy person, but for someone in Rita’s condition this is fantastic news. From her condition just 5 days ago this, is truly a miracle, God does answer prayers.

Rita still has a long battle with pneumonia, and the walking and sitting up will help in that battle. She still has drainage from her abdomen, which is starting to slow down. Hopefully that means that the perforation in her colon is healing on its own. We’ll know more on that when another CT Scan is performed. I don’t know when that will be at this time.

Rita’s heart rate is 87, her respiratory rate is 18 – 24 (12 - 20 is normal), her oxygen saturation is at 98% (above 93 is good), and her temperature is @ 100 degrees. Rita has been removed from fentanyl through an IV for her pain and is now getting injections for pain as needed. She has TPN feedings through an IV, and all her vitamins and minerals are also being feed to her through separate IV’s.

Next Tuesday will mark 3 weeks from her initial surgery to install the J-Tube which is where this all began. From my stand point it seems like forever ago. I’m just looking forward to the day that I can bring my wife back home and resume a normal life, but a normal life will be a long way off even after Rita comes home. Rita has a very long, hard road ahead of her for recovery.

Please continue to pray for Rita. Your prayers are very appreciated and needed.

Tuesday — 8/13/2013

Rita had a very tiring day yesterday as both her Physical Therapy and Respiratory Therapy are ramping up. Just ‘baby-steps’ at this time, but very hard on her in her weakened condition. Her voice is now above a whisper, which means that her lungs are getting stronger. Yesterday evening she was moved from the ICU Unit to the Progressive Care Unit (PCU). That is very good news!

Rita’s coming home in the future is looking a lot more positive. I thank everyone for their prayers for Rita’s recovery. Her recovery is still has a long way to go, so please keep praying for her.

Wednesday — 8/14/2013

Rita was very tired yesterday. It seems that her Respiratory Therapist was in once every hour during the night working with her. I hear a lot of progress in her voice from these exercises. Sitting up in a chair for an hour at a time is very exhausting on her. This is something that she must do to help her lungs heal themselves of the pneumonia. Her Physical Therapy is not progressing very quickly. Rita is very unsteady when standing and walking. The Nurses and Staff in the PCU on 5 South are very optimistic with Rita’s advancements of her recovery.

Last night around 8:00 PM Rita called me at home to tell me that her catheter had been removed, along with several other tubes in her. She will keep her drainage tube in her abdomen until the perforated colon is healed. Rita said that she was looking forward to seeing me tomorrow (today). Rita is not able to eat or drink anything by mouth, with the exception of a small sponge on a stick for moisture.

We do not have a date on her being released from the hospital, but was told that it most likely is over a month away. The surgery team is discussing a CT Scan to check on her pneumonia, and using a contrast solution to check on the perforation in her colon. We still do not have a time frame as to when that will be done. I did inform a member of the surgery team that I expected a CT Scan with results on the day that they do release her from the hospital. Something that they decided not to do last week, which caused the problems to escalate before being detected.

Thursday — 8/15/2013

Rita had another hard day yesterday. She has severe pain in her chest, and the hospital ran an EKG to rule out heart problems. They also did a sonogram with a contrast solution to check her perforated colon and J-Tube position. The EKG checked out fine and they say that they believe that the pain from which Rita is suffering is from her pneumonia. From the sonogram, the surgery team had decided that they need to move the J-Tube out a little more to allow the perforation to heal.

As soon as a private room comes available on 3-South, Rita will be moved from the PCU to 3-South which is the surgery recovery ward. I did protest this move due to the experiences from Rita being in 3-South for the 13 days following her surgery to place her J-Tube. The Floor Manager is supposed to talk with me about my concerns to make sure that none of the previous problems that we experienced occur again.

Friday — 8/16/2013

Rita was able to walk (assisted) 50 feet yesterday, which was quite tiring on her. This feat that we all take for granted, caused her Heart Rate to rise to 114 from 96, her Oxygen Saturation dropped to 84% from 98%; and her Respiratory Rate went from 19 to 39. In other words she was physically exhausted from this small walk. Rita had a Chest X-Ray taken yesterday morning, which came back on the positive side. This shows that she is fighting off the pneumonia. Sometime today the surgery team is supposed to replace her drainage tube with one smaller in diameter and relocate it in her abdomen. At the present time she is still in the PCU waiting on a private room to open up on 3-South.

The PCU nurses are amazed how someone so small and weak can fight like Rita is fighting to recover. As Rita tells them: It’s all up to God! I continue to see small improvements in her health each day, but they come with a lot of pain to her. I’ve been told that this is where some patients give up.

Hopefully with your prayers and God’s grace Rita will beat this situation.

Sunday — 8/18/2013

I know that I expected a somewhat quiet weekend, but it isn’t up to me. Around 3:30 AM this morning Rita starting having trouble breathing. From the blood gas test that was performed Rita was immediately sent to the PCU and has a machine to help her breathe. It was giving Rita 30 LPM (Liters Per Minute) of 100% oxygen warmed to 98.6 degrees with moisture added. This occurred around 5:30 this morning. Rita was monitored very closely by the nurses and the respiratory staff. At noon I was informed that the X-Rays taken earlier showed fluid around and in Rita’s Right Lung. They upped her oxygen to 40 LPM and moved Rita to the Surgery ICU for a procedure to drain the fluid from around Rita’s Right Lung. They also gave Rita Lasix to help clear the fluid from her lungs. They called in a Respiratory Specialist, who drained approx. 45 ounces of fluid from around Rita’s Right Lung. This eased some of Rita’s breathing problems, but she is still receiving 100% oxygen warmed to 98.6 degrees with moisture added at a rate of 40 LPM. Until her lungs clear from the fluids in them Rita will continue to receive oxygen to help ease her breathing.

It seems like it’s always one step forward, two steps back. It all in God’s hands, so keep praying for Rita’s health.

Tuesday — 8/20/2013

Rita’s breathing was doing better yesterday. They cut back on her assisted breathing to 40% oxygen at a rate of 20 LPM. This makes her breathe more on her on and better exercises her lungs. The Lasix seems to be doing well on removing fluid from inside Rita’s lung. Her vitals all looked good yesterday, but she is still in a lot of pain. Yesterday the doctors said that they believe that Rita