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Julie T: Surviving Daughter of a Diffuse Scleroderma Patient

When she became ill, her belief was the disease was a way to understand and comfort others who were suffering.

Carolyn Mauro with her kitten JoeyMy mother, Carolyn Mauro, was sixty-five years old at the time of her diagnosis of scleroderma. Through her sixty-four years she was working full time, healthy and very active. After losing my father ten years prior, she devoted most of her free time to helping others by being strongly involved in the Stephen Ministry and Hospice. She also held seminars and discussions on various topics such as “Coping with Grief”. When she became ill, her belief was the disease was a way to understand and comfort others who were suffering. She felt her illness could in turn help others and planned to speak about her experience offering inspiration. Sadly, her disease spread quickly and she never had the opportunity. My mother was diagnosed with diffuse systemic sclerosis and died within a short few months from complications of pneumonia.

Soon after my mother started experiencing unusual symptoms I started a binder for her. It included her symptoms, doctor's visits, medications and tests. Within a short few months this one page simple document quickly turned into many pages of complicated and unfamiliar words. As with many scleroderma patients, the diagnosis wasn't until after repeated visits to several specialists, numerous tests and a variety of different medications. As my mother followed the path for treatment related to a possible disease or virus, a new symptom would arise which would lead her in another direction entirely. It was an exhausting and emotional journey for her and those who loved her as we tried to understand what was happening and why.

Throughout the painful months, my mother dealt with her illness as she did with her life. She thought of others, mostly her children and grandchildren. I know she must have been terrified inside but who we saw was a strong, positive, spiritual woman. Our family deals with most difficult situations with laughter and humor, even in the most trying times. Nurses and doctors would seem surprised as they walked into her room hearing us laugh and seeing smiles on our faces. I know inside I wanted to scream and cry, but good or bad, that wasn't “our” way. Looking back I wished I'd had…maybe then my mother would have, too. She needed to do that, to release her emotions and admit she was scared, but she never did. As a family, we spent the last sixteen days of her life by her bedside in a hospital. We desperately tried to comfort her, remain positive and support each other through an emotional and painful experience, praying we would bring her back home.

Many people and their loved ones are struggling, confused and scared of the unknown. My mother lost her life very quickly. My intent is not to scare others but to help educate. I believe with each story shared, it offers encouragement, strength, knowledge and hope.

I am happy to share her symptoms as they were written in the binder as well as her journey, which is a timeline of her doctor's visits, medications, symptoms, tests and the sixteen day hospital visit. It does not include our personal thoughts or our pain. My hope is that in sharing her story and symptoms, it will help others with a better understanding and earlier diagnosis of this complicated disease.

Symptoms:

2006 (First Symptoms Started Over a period of 9-12 months in 2006)
- Pain in wrist. Primarily right then left (diagnosed with tendonitis 2006).
- Arthritis symptoms. Loss of strength in hands, stiff , swollen hands and fingers (cannot open regular water bottle or wear rings).
- Radiating pain going up arm (cannot sleep due to pain).
- Fatigue (worked only 3 days versus 5 days a week due to fatigue).
- Flu-like symptoms, 1-2 days per week going couch to bed.

Fall 2007 (Additional Symptoms Over a few months from Aug-Oct 2007)
- Raynaud's. White/blue fingers and numb when exposed to cold temperatures. Fingers stay numb for a long period of time. Wearing gloves.
- Swollen Face and Eyes to Chin. Mostly on right side of face but noticed on left too. Skin is “tough” and feels like a mask.
- Soreness inside Mouth/Gums, especially roof of mouth. Sensitive to even toothpaste.
- Red patches on upper part of cheeks.
- Dry skin.
- Dry, irritated eyes. Could not wear contacts since fall.
- Shortness of breath. Need to rest when walking up an average flight of stairs to catch breath, Fall 2007 (Diagnosed with Interstitial Lung Disease-Pneumonitis in 12/2007).

Timeline:

2006: A couple of years ago started to experience pain in wrist and arm. Went to walk-in and x-ray showed tendonitis. Wore wrist brace and rested; some relief over time.

Fall 2006: Pain returned, very bad, radiating pain up and fingers numbing. Both wrists, one worse than other. No strength in hands, cannot make fist. Not sleeping due to pain, very tired, not feeling well, fatigue, flu-like symptoms. Spends 1-2 days per week in bed or on couch.

Spring 2007: Her general practitioner thought it may be rheumatoid arthritis or some type of other autoimmune disease. He recommended she see a rheumatologist and ordered blood tests.

Summer 2007: Her rheumatologist said her blood work was negative for specific disease (rheumatoid, lupus, etc.) but that it did show some sort of an autoimmune disease. Decided to treat as such, though in time something may show up due to this may be the beginning stages or could be some sort of a virus that may go away in time on its own. In the meantime while either waiting for something to show up or the virus to go away treating for comfort with pain meds and given meds to strengthen immune system. Recommended steroids for severe pain, flare-ups and Nsaids, a non-steroidal medication to take on a continuous basis. She is on hydroxychloroquine, naproxen, daily vitamins, and fish oil tablets.

11/2007: After several weeks of medications, her pain is subsiding going from a 9/10 to 4/5. She is still unable to use her wrist normally, such as she cannot open a water bottle; she has no strength and her wrist is very stiff. She developed allergy type symptoms such as heavy congestion, swollen eyes/face and numbing. Her doctor believes these symptoms are unrelated and recommends an ear/nose/throat doctor.

11/2007: Ear/Nose/Throat doctor was unsure of the cause and prescribed antibiotics, and thought if they work it is bacterial and not viral. During the first 10 days of antibiotics her symptoms were better, but once off of them, they returned. She was prescribed a second set of 10 day antibiotics and her symptoms again subsided but returned again once off.

11/2007: Last few weeks noticed that she is not only just very fatigued but she is actually getting out of breath. She is having difficultly making it up one normal flight of stairs without stopping.

12/18/2007: After examining her sinuses, her doctor determined there is fluid dripping from the sinus which indicates a sinus infection. He is unsure why two doses of antibiotics did not work. Also, he is confused about numbing on the face and soreness inside her mouth. He thinks everything may be related. He prescribed a third set of antibiotics and nasal spray for comfort, and ordered a cat scan of the sinuses. Sinusitis can be caused from an autoimmune problem.

12/19/2007: The doctor was mostly concerned with shortness of breath as a new symptom and does not believe it is related to the medications. He ordered tests and prescribed prednisone (30) day pack to help with pain, use as an anti-inflammatory, and said it may help her feel better.

12/20/2007: CT scan of the sinuses, negative.

12/21/2007: Echocardiogram, negative.

12/27/2007: Doctor called to say that CT scan of sinuses were negative and to keep taking antibiotics.

12/27/2007: Another doctor called and asked to see mom right away today at 3:00 to review tests. The heart echo was okay but her lung x-ray showed pneumonitis interstitial lung disease. He is very concerned and believes this is caused by the underlying autoimmune disease and needs to be treated aggressively and she needs to be seen by a pulmonary specialist. He believed chemotherapy treatment was going to be needed to treat this lung disease.

12/28/2007: Pulmonary Function Test.

12/29/2007: CT scan of lung, high resolution.

01/03/2008: Mom weighs 145lbs. with 99% oxygen level and blood pressure of 122/72. The specialist believes this is serious and should be treated aggressively. Feels most likely that the cause is autoimmune disease. They scheduled a bronchoscopy to biopsy the mucus in bottom of the lung and get a piece of lung tissue to biopsy. This is the least invasive way to get a biopsy but may not give us answers. If the results are inconclusive, they need to schedule an actual lung biopsy, which entails a small incision between the rib cage and removal of a piece of lung. It would require a three day hospital stay and there is a possibility that this procedure may even be inconclusive. Mom needs to go off Naproxen until the procedure, due to it being a blood thinner. The doctor thinks a high dose of prednisone in conjunction with other drugs will be used as treatment.

01/04/2008: Bronchoscopy. Three biopsies were taken during the procedure.

01/07/2008: Doctor said he believes the diagnosis may be mixed connective tissue disease (MCTD), which is when you have symptoms from several different autoimmune diseases, one being lupus. He doubled her dose of prednisone (from 10mg to 20mg) and anticipates continuing it for approximately six months. He thinks chemotherapy or something similar will be used in conjunction with prednisone for treatment, and feels we need to act quickly and aggressively for best results. The prognosis is that it may go away completely in six months, never returning or come back in one year, five years -- or may not go away and get continually get worse. It is too unpredictable of a disease to know.

01/08/2008: The infectious disease doctor also feels this is likely MCTD and not an infectious disease. He does not believe this is tick borne or lyme type disease. He questioned HIV or contact with tuberculosis, but thinks both are unlikely.

02/02/2008: Lung Biopsy. The doctor said mom's lung tissue did not look normal, that the capillaries on surface, texture and color are not right. During recovery mom experienced sleep apnea. Two days after surgery she developed atrial fibrillation with a heart rate up to 150; normal is 60-100. It may be one time incident caused by surgery. She was released on Lapressor to help prevent a recurrence.

02/12/2008: Biopsy results are:
- UIP (Usual Interstitial Pneumonitis)
- Pulmonary Fibrosis (advanced stages of UIP)
- Perivascular Inflammation (Inflammation of the blood vessels)
- Collagen Vascular Disease (Collagen is a tough, glue like protein that represents 30% of the body protein. It shapes the structure of tendons, bones and connective tissues. Problems with the immune system can affect these structures is known as collagen vascular disease.)
- Pulmonary Hypertension
- Possibility of Scleroderma

The doctor suggested it may be a good idea to change to a rheumatologist who specializes in scleroderma in case that is where we are heading or at the very least get a second opinion. We told him we already looked into a specialist, Dr. Naomi Rothfield at UCONN Medical Center.

02/14/2008: Doctor stressed the seriousness of pulmonary fibrosis and the possibility of scleroderma, said she needs to be watched very closely and start chemo right away. He prescribed tablets to help relieve sores in her mouth.

02/15/2008: We met with rheumatologist to update her with the surgery and biopsy results. Mom agreed to change rheumatologists to someone who specializes in scleroderma.

02/19/2008: We called the doctor, concerned about mom's cough that started over the weekend. The secretary called back and said per doctor, he is very concerned and mom needs to be looked at right away, to go to a walk-in clinic because he was booked up for the day, and that if there is an infection she needs to be taken of the cyclophosphamide right away. I told them we were not comfortable going to a walk-in because of her complicated situation. Someone from VNA made an unscheduled visit and listened to her lungs and did not feel an x-ray was needed.

02/21/2008: Mom's follow up visit from surgery went well with echocardiogram and x-ray. Due to her high blood pressure they also did an EKG, which was okay.

02/28/2008: At UCONN, mom was met and examined by a male intern and spoke with Dr. Rothfield for a short time, who said she believed this may be scleroderma. She prescribed Actonol once a week (to protect bones) and stressed the need for a blood pressure cuff at home, and said that if her blood pressure is continually high, mom should go to ER.

03/14/2008: Mom had another doctor visit with x-ray and echocardiogram. The tests look good, the disease has not progressed, chemo and prednisone appear to be working.

03/20/2008: Dr. Rothfield agrees with keeping medications the same. Mom's lungs sound better than last month. The doctor ordered blood work and said mom's weakness in legs is from medications and that she should do leg lifts to help strengthen them.

03/24/2008: Dr. Rothfield called to say that mom's blood work shows diabetes.

03/25/2008: Mom's doctor explained that prednisone can cause diabetes. The disease may be temporary. Once off prednisone, the body may regulate on its own. Mom was given a glucose meter and told to attend diabetes classes. She was prescribed Carvedilol.

03/31/2008: At the diabetes meeting, the nurse suggested mom take one tablet twice a day to start and see if blood sugar can be regulated with the one pill and diet.

04/02/2008: Opthalmologist said tests show beginning stages of glaucoma.

04/02/2008: Doctor called and changed meds. He removed Lopressor and changed to another type of blood pressure medicine. Metformin/Glurophage.

04/03/2008: Diabetes meeting, 260 glucose/LDL 134, HDL 76/Triclycerides 99, 3 hours after breakfast 169 level.

04/07/2008: Emergency room at UCONN. Mom hadn't been feeling well for several days. She was extremely fatigued, weak and had no appetite, with the sores in her mouth getting worse and very irritated and painful. She woke up with chills and fever of 102 with heart rate of 126. In ER, her fever and chills subsided due to meds we gave her at home but due to her low white blood cell count they decided to admit her for the night.

04/08/2008: Per the morning nurse her sugar level was 57 and white blood cell count was very low. Normal range 4,000 to 11,000 and she was 0.2. They stopped chemo to help raise her blood count.

04/09/2008: By noon mom developed another fever of 99.7 and her x-ray showed small patch of pneumonia. She was started on two kinds of antibiotics through IV.

04/10/2008: They talked about discharging her the next day to rehab, possibly VNA. We were concerned she was worsening and were not comfortable with her leaving the hospital. She would most likely have to leave hospital with oxygen. There are problems getting blood and IV due to the hardening of her skin, which is caused by scleroderma. In the morning she was on 2 liters of oxygen, and her oxygen saturation level was 95. In the afternoon, she was on 4 liters of oxygen and her saturation level was 90-91. Her white blood cell (WBC) count was up to 3.9. She had chest pain when walking to the bathroom, so they did an EKG, and it was normal. In the afternoon her temperature was 100.7. They changed her oxygen from a nose to mask due to low levels of oxygen in the blood. An -x-ray showed the pneumonia was worse than yesterday.

04/11/2008: Mom's oxygen level continued to deteriorate and she was moved to ICU. They wanted to put her on a respirator and hoped it would allow her let her lungs rest and let the respirator breathe for her for two or three days while they aggressively treated the pneumonia. We all agreed and my mother felt confident that this was only a temporary situation. Sedation would be required when on the respirator to help keep her calm.

04/12/2008: They started sedating again. When too awake, mom would try to breathe on her own and over compensate for the machine. Her respiration would quickly rise into the 40's while in sedation it would be down into the 20's. But sedation brings the blood pressure too low (90/50) and additional meds would be required to help raise her blood pressure while in sedation. She would come out of the sedation almost immediately and would be responsive. During the night when we were not there, she “broke sedation” and tried pulling out respirator. Due to this her wrists were restrained. Her arms and legs were very swollen which they believed was due to leaking IV. Her sugar level was too high (260) and so they gave her insulin through IV.

04/13/2008: The lung x-ray showed that her pneumonia was worsening. Blood gases did not respond to high oxygen count. Her blood pressure was still too high; usually when sedated it should be lower. The doctor stated he would have liked to see positive results by now and the longer she is on the respirator the more grave her situation becomes. At this point she most likely would not be able to return home on the “nose” oxygen, she would require a mask. They inserted an A-Line in her neck and said we should see the swelling in the arms and legs go down. Her blood gas improved which means they can lower oxygen, but when they lowered the oxygen, her heart rate, respiration and BP went dangerously high. Her doctor stated the afternoon x-ray looks a little worse like “there is a lot going on” but also said it may be the “brightness of the x-ray” and we'll retake tomorrow. In the evening, mom spiked a fever of 103.6 so they gave her a bath and are taking more cultures.

04/14/2008: Mom's oxygen level was up to the max again, so they did chest x-ray and blood gas. Her fever developed again, 100.5 and they had difficulty bringing her respiration down. They gave her anti-anxiety and pain medication and if her blood gas comes back bad they may need to put her on a different medication called “Paralyze Patient” which can be administered through a different kind of machine. Her chest x-ray looks worse; it shows more congestion and more fluid. They are having difficulty reducing high pressures even with high doses of sedatives.

04/15/2008: In the early morning, mom spiked a fever 103. Her heart rate is in the 120's, and respiration in 40's again. Her blood pressure is low and unstable, oxygen at 70%.

04/16/2008: Cultures tested positive to a type of infectious disease, which might be CMV (cytomegalovirus). Antibiotics are not working to cure this strain; they cannot determine exactly what type of pneumonia it is. Mom's oxygen level is 97%, and she has no fever so they will try decreasing the respirator level again.

04/17/2008. X-rays showing an increase in pneumonia and blood gas required the respirator level to be increased.

04/18/2008: In the morning they lowered sedation slowly and by afternoon her oxygen was down to 70%. The are concerned that she is not coming out of sedation as quickly as she should and they are talking about a possible tracheotomy.

04/19/2008: She had a very difficult morning. Her fever spiked to 104, and she was very upset and agitated. Her reart rate and blood pressure were high so they had to sedate her again. Her oxygen level went back up to 100%. Her fever broke by midday but she was very clammy and seemed uncomfortable.

04/20/2008: A calm day. They are trying to lower her sedation and keeping oxygen up to keep her rested and they will slowly try to lower it again. We are waiting for more cultures to come back. They are concerned about the length of time she has been on a respirator.

04/21/2008: She is stable with no fever. Oxygen lowered to 70%. Surgeon may examine her to determine if a tracheotomy is a possibility. There was a long discussion regarding a living will. A tracheotomy or current life support was the purpose of mother's living will. The doctor said it would no longer be a temporary situation. He is sending for the tissue biopsy results to be sent for review to find exact type of pneumonia and verify if CMV.

4/22/2008: In the morning, an x-ray showed a hole in her lung which occurs from being on the respirator for a long period of time at high levels. With the pneumonia spreading and the pulmonary fibrosis caused by scleroderma her lungs could no longer expand and even with the help of a respirator she could no longer live.

April 23, 2008: With her family by her side, my mother, Carolyn Mauro, passed away in the hospital ICU this day.

It was beyond words, beyond emotion and beyond anything we could ever imagine. We are very proud of her struggle as she fought this complicated disease. I do not believe she lost the battle if this diary and her story can bring knowledge and hope to others, which was her wish. We have comfort in knowing she is reunited with my father and although her loss has left emptiness in our hearts, she will never be forgotten and be forever loved.

To Contact the Author

Julie
Email: [email protected]
Story edited 03-23-09 JTD
Story posted 03-27-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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