One of the major symptoms of my autoimmune diseases is peripheral neuropathy.Peripheral neuopathy describes damage to the peripheral nervous system. This is the communication network that transmits information from the brain and spinal cord (the Central Nervous System or CNS) to every other part of the body. They also send sensory information back to the brain and spinal cord, such as a message that your feet are cold or your finger is getting burned. Damage to the peripheral nervous system interferes with these vital connections. Much like static on a telephone line, peripheral neuropathy interrupts messages between the brain and the rest of the body.
Because every peripheral nerve has a highly specialized function in a specific part of the body, a number symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur. Regrettably, I am one of those extreme cases.
So, why did I give you this brief lesson in peripheral neuropathy? Because every other Monday I am admitted into the University of Minnesota's Infusion Specialty Clinic for six hours of Intravenous Immunoglobulin (IVIg) therapy to help control the peripheral neuropathy that is caused by my autoimmune diseases.
|Specialty Infusion and Procedure Center|
The Specialty Infusion and Procedure Center is a brand new department located on the second floor of the Phillips Wagensteen Building on the University of Minnesota Medical Center Campus. Prior to this new facility I received my IVIg either in the hospital or in the Masonic Cancer Center. Both very good locations, but unfortunately not large enough for the growing populations of people needing infusion therapies.
The SIPC a beautiful, state of the art facility completely designed to meet the needs of the infusion patient. Offering both rooms with recliners and hospital beds, it is comfortable, quiet and fully staffed with nurses specialized in the administration of the many varieties of infusion therapy. This fact alone makes my bi-weekly visits much easier to tolerate. In a hospital setting nurses are presented with an almost unlimited array of patient/illness circumstances. This is even more evident when being hospitalized for autoimmune diseases - no one really knows where to "put" you. Most likely, depending on what part of one's body is being affected, that is where one ends up. For instance, if I am having trouble with my pancreas, I end up on the 7th floor in the GI department. If I am having trouble with my nervous system, I end up on the 6th floor in neurology. There is no floor for autoimmune diseases.
By having the specialty infusion center available to me, I avoid much of the suffering that comes with having nurses that are not specifically trained in IV therapy. IV's go in easier, infusion rates are better managed and overall "tricks of the trade" offer comfort and ward off potential problems. Being in a smaller more intimate setting also allows the opportunity to establish relationships with the nurses. With the risk of serious allergic reaction a very real possibility, it benefits me to have a nurse that knows my body almost better than I do.
About four hours into the therapy I gradually start to wake up. This begins the "not so fun" part of the IVIg experience. Even with the administration of the pre-medications, I still experience allergic reaction to some degree. At times this can be quite minor - lower back discomfort, mild headache and low grade fever. Other times, I suffer from flu-like symptoms - body aches, fever, chills and nausea. Two times now I have had a serious reaction which has ended up with a week long stay in the hospital. These symptoms are much like those of infectious meningitis and are completely disabling.
Tomorrow is my IVIg Monday. I've been asked by family and friends if I dread when this day comes. Honestly, I really do not. There are so many people out there suffering from autoimmune diseases that do not have access to good health care. Many have doctors that refuse to give them appropriate diagnosis to receive the correct care, others have doctors that remain uneducated in the latest types of treatment. And even those with access to quality providers run into issues of insurance authorization (IVIg can cost up to $45,000 per treatment) or no insurance at all. I have been quite blessed in this regard. Not one second goes by that I am not thankful for the insurance I have, the doctors that treat me or the facilities in which I receive care.
So, unlike the song by The Mama's And The Papas, when Monday comes you won't find me "crying all of the time". Instead, the next time you think of me sitting in my recliner on the second floor of the PWB...don't feel bad. Know that I am in good hands and most likely dreaming of all the wonderful days to come!
Peace to you.