Archives For Infectious disease

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 Eric’s Perspective:

Most chronic, invisible diseases are like an iceberg. Even once you think you’ve got a complete picture of the shape of the monster, you haven’t seen the largest, scariest part. CF isn’t something that just flares up sometimes and lets you live your life the rest of the time; it’s also not something that can be solved by living a healthy lifestyle. Some CFers may prolong the inevitable through exercise, organic veggies, and meditation—but regardless, the disease will have its day. There’s no beating CF, no remission, no prevention, no cure. It seeps into every second of every day of your life and dictates every decision you make, from work to relationships and everything in between.

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If you’re lucky enough to find yourself in a supportive relationship as a CF patient, you’ll see that your disease drives most of the major decisions you make as a couple. You and your partner will make decisions about jobs, money, home, children, pets, vacation, and just about everything else by accounting for CF. 

Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world. And when the right person comes along, they not only give you a reason to fight all the harder but help you with all of the many everyday tasks required to stay healthy and breathing. I was blessed to find Marissa, an unbelievable loving, caring, prepared woman who carries my heart, gives me hope, and takes care of me when I need the extra help.

Though it may seem impossible, CF has a positive influence. You learn to ignore the unimportant stuff and the judgment of “successful” couples and let go of visions of a “perfect” family. All of the decisions that other couples make easily become major turning points for a couple affected by CF, so we put a lot of thought, planning, communication, and sharing into our choices. Honesty is a given because a lot of simple things can be life or death.

You spend a lot more time together than many young couples, because of a) you’re stuck in one place doing treatments/at the hospital/tethered to your oxygen, and b) you’ve learned to truly appreciate the time you have together.

Every day is a reminder of life’s fragility, between the infections, hemoptysis, and gasping for air during vicious coughing spells. Having to consider the implications of an incurable fatal disease also forces you to recognize and be grateful for the time you have together.

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“Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world.”Eric

 

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Yesterday (March, 25th, 2013) was my yearly transplant assessment, it’s a day filled with appointments and test to determine how well my lungs are progressing.  Being my third year since my transplant there are fewer tests, so the day isn’t as filled as it use to be.

I start off with blood tests; the blood is used for many tests such as checking the levels of the various medications I take on a daily basis. People who have undergone any type of transplant require a daily Immunosuppressant (e.g. Tacrolimus or Cyclosporine). It is vitally important that these levels be checked regularly. High levels could lead to toxicity or over-immunosuppression, and low levels can result in rejection.

A “normal range” will vary for every patient based on medications and length of time since transplant. This test has been important as I have been on Voriconazole for a while, one of the side effects of Voriconazole are increasing the level of immunosuppressant medication in my blood. The level of this test came back too high (17); the doctors like to keep me at a level of 10-12. This level has been slowly rising for a couple of months.  To tackle this issue the doctors have instructed me to cut back on the strength of the Tacrolimus.

Next blood test would be the Electrolyte Test:  Electrolytes are dissolved minerals present in the human body. The balance of the electrolytes in our bodies is essential for normal function of our cells and our organs. The following is a list of the Electrolytes that were tested and how they function within the body:

  • Ca (Calcium) Strong bones, teeth, blood clotting, and heart and nerve function
  • PO4 (Phosphate) Strong bones (works with calcium)
  • Mg (Magnesium) Muscle function and blood clotting
  • K (Potassium) Heart and muscle function
  • Na (Sodium) Salt and water balance
  • CO2 (Bicarbonate) Acid balance
  • Cl (Chloride) salt and water balance

My electrolyte test came back with great results!

The next test is the Kidney Function Test.  Creatinine and BUN are waste products normally removed by the kidneys. These tests measure the amount of Creatinine and blood urea nitrogen to determine how well the kidneys are doing their job.  Due to all the medications, I take this test is very important as my kidneys tend to take a beating.

The Glucose test measures sugar levels in the blood. For some patients, certain medications can produce a diabetes-like condition in which blood-sugar levels are too high. The pancreas and kidneys do not always function properly in people with Cystic Fibrosis. The sticky mucous which damages the lungs also interferes with normal functioning of these organs. In addition, the large variety of medications that we consume play havoc on these organs often leading to a form of Diabetes called Cystic Fibrosis Related Diabetes (CFRD).  In 2006 I was diagnosed with CFRD.

The last few tests that are checked with my blood are:

WBC – (White Blood Cells). This monitors the increase or decrease of white blood cells to determine if there could be an infection or if the body has a lower defense against infection. People with transplanted organs have to follow a very fine line of taking the right amount of immunosuppressants without going into rejection and not too many that the body’s defenses are down and open to infections.

HCT – (Hematocrit). This test measures the percentage of red cells in the blood – red blood cells carry oxygen to the body so when Hematocrit is low, it could cause the feeling of tiredness or having no energy.

PLT – (Platelet). This test measures the level of Platelets in our blood. Platelets help the blood clot after an injury – low platelet levels can cause easy bruising and longer bleeding time after an injury or operation.

The results from all my blood test other than my Tacrolimus level being too high were great.

Next test on my list was a chest x-ray; the purpose of this test is to look at the lungs and lower respiratory tract. The x-ray will clearly show infections or damage to the lungs. If infection or damage is found a CT scan of the lungs is required. When the doctor and I viewed the x- ray in clinic everything looked clear and healthy, the doctors were quite happy to with the results of my x-ray.

After my chest x-ray, I head up to the 10th floor to do my pulmonary function test (PFTs). These tests are a group of tests that measure how well the lungs take in and release air and how well they move oxygen into the blood. I am quite used to this test as I have done it all my life. It is a very important test for people with Cystic Fibrosis as it is an indication as to how well the lungs are working.

I mentioned this test in “My Journey Through My Transplants” where I had an FEV 1 level lower than 40 percent in fact while waiting for my first transplant it was in the low twenties.  Since my second transplant, I have maintained an FEV1 of 82 percent lung function. The results might dip a little when I am not always feeling up to par but I managed to get them back with exercise.

The last test of the day before I see the doctors is a six-minute walk.  This is a self-paced test where you walk as far as you can in 6 minutes on a flat surface. This measures your exercise tolerance (endurance), muscle strength and oxygen needed for exercise. I continue to increase my performance on this test; I attribute this to keeping a regular exercise routine. Results from my last six-minute walk were 531 meters.  This time I did 575 meters in six minutes. Maintaining a regular exercise program is really important after receiving any transplant.

The first Doctor I see is Dr. Rothstein he belongs to the team of Infectious Diseases (ID) and has been following me closely as I have developed Aspergillus; which is a fungus ball in the lungs. It may cause no symptoms and may be discovered only with a chest X-ray, or it may cause repeated coughing up of blood and occasionally severe, even fatal, bleeding. A rapidly invasive Aspergillus infection in the lungs often causes a cough, fever, chest pain, and difficulty breathing.

Aspergillosis affecting the deeper tissues makes a person very ill. Symptoms include fever, chills, shock, delirium, and blood clots. The person may develop kidney failure, liver failure (causing jaundice), and breathing difficulties. Death can occur quickly.

In addition to the symptoms, an X-ray or computerized tomography (CT) scan of the infected area provides clues for making the diagnosis. Whenever possible, a doctor sends a sample of infected material to a laboratory to confirm identification of the fungus.

Aspergillus species is a fungus that often lives in the airways of adolescents and young adults with cystic fibrosis (CF). When people develop an allergic reaction to Aspergillus, it is called Allergic Bronchopulmonary Aspergillosis. ABPA affects about 2 to 11% of the people with CF. It causes inflammation in the lungs and, if untreated, can cause further scarring and fibrosis. Aspergillus is a group of molds, which is found everywhere worldwide, especially in the autumn and winter in the Northern hemisphere. Aspergillus is also common in the home, including bedding. Molds are also called filamentous fungi. Only a few of these molds can cause illness in humans and animals. Most people are naturally immune and do not develop disease caused by Aspergillus. However, when the disease does occur, it takes several forms. The types of diseases caused by Aspergillus are varied, ranging from an allergy-type illness to life-threatening generalized infections. Diseases caused by Aspergillus are called Aspergillosis. The severity of Aspergillosis is determined by various factors but one of the most important is the state of the immune system of the person.

I’ve been put on a treatment of Voriconazole however my treatment is a little different than others. The normal course of Voriconazole treatment is 3 months. In the past every time I would finish my 3 months of Voriconazole there would be an improvement in my health but after a week or two, I would start getting infections from the Aspergillus. To maintain my health I have been put on a permanent course of Voriconazole.

Voriconazole has a few side effects that the doctors and I have to keep an eye on. One is it increases Tacrolimus levels. As mentioned before Tacrolimus is a drug that helps maintain my immunosuppression so my body will not reject my lungs. A Tacrolimus level that is too low will let my body reject the lungs and a level too high could raise toxicity levels causing death.

The second side effect that Voriconazole has and in fact has caused me problems in the past is high kidney levels.  High kidney levels can lead to chronic kidney disease or even worse kidney failure.  In order to stay alive, we need functioning lungs and a strong heart and healthy kidneys. Even though most drugs are meant to help you stay alive, there are some drug combinations that need to be monitored very closely. Such is the case when taking Tacrolimus and Voriconazole together.  These two drugs need to be properly balanced in order for them work.

In order to maintain this balance, I need to see Dr. Rothstein every six months.  His only concern this appointment was the high level of Tacrolimus found in my blood; he will discuss this with the transplant team and get back to me.

Once I am finished with Dr. Rothstein I have a couple of hours to kill till my next appointment. Most hospital appointments or visits my brother Matt (who lives in T.O) and I meet up and spend the afternoon together, never making plans other than getting together.   This always makes for an interesting day as we are both a little eccentric in our own unique way. Today we decide to go into China Town and make our way to the market for some fresh fruits. We always add some kind of food to our list of things to do as Toronto has a wonderful list of different ethnic restaurants.

My last appointment is with the transplant team, where they will review the test results from that day as while a small physical exam. This is also a time that if I have any issues or concerns we can discuss them. Today my appointment with the transplant team is short which indicates things are going well. I have to admit I am very happy with my results.

Hospitals have been a large part of my life since I was born.  I spent my first two months of life at Sick Children’s Hospital in Toronto, combined with all the years of being admitted for infections, operations, and complications I am sure the total hospital days would add up to thousands.  There have been many times where I have been told upsetting and concerning news about my health, but visits like today are always welcome; it is a reward to know things are working out!  I may not have the ideal heath everyone is looking for but leaving the hospital today knowing things are optimally working is what I call my Clean Bill of Health!

Obtaining optimum health is very critical to me. Regular exercise and healthy eating are vitally important components in maintaining my health. Eating healthy unprocessed foods and following a regular exercise program are part of my daily lifestyle. Please check out my menu suggestions posted on my blog.

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