This article is to share our experience with numerous doctors, in our quest to obtain a correct diagnosis and supporting treatment for my husband’s condition. I have a true passion in sharing both the positive and the obstacles we have encountered in our roller coaster ride into the pemphigus journey.
When I look back, I can remember the exact day and time when I received a confirmation phone call advising that the result of Joel’s biopsy was – pemphigus vulgaris. Please realize that this was the third diagnosis that we had received within a three month period and I was slightly leery as the two previous diagnoses and medications and treatments had not been successful.
The doctor was emphasizing what to watch for, medications to take, side effects of the medications, foods to eat and foods to avoid, the seriousness of this illness and the list goes on – and I stopped comprehending all this information when she stated, “life threatening”. Of course, I had to ask her to repeat a couple of things and that is when I realized I need to write this down as it is too much to digest at one time and I needed something as a point of reference – thus the implementation of our Pemphigus Journal.
The Journal has been at every office visit and is close by for all phone calls. Oftentimes the Journal is recognized by the doctors as a great idea, due to the variety of medical personal that we interact with. This journal provides the various dates, results, and recommendations made during the office visit. It serves as a reference guide when the physician quizzes us as to when, and the results of, our latest lab tests, the current medications and dosage, which physician prescribed that medication, and the validation for that medication. Oftentimes, we have been educated on “home remedies” to try that could/can assist in our battle with this “new” auto-immune disease and that info is acknowledged within the Journal.
This Journal not only captures the doctor’s visits but also contains our findings from the various dressings/bandages and lotions/gels that have been recommended. I have also documented my husband’s emotions in his battle to accept this life altering disease. This disease not only impacts you physically but emotionally also. Doctors need to know this and assist in treating that side of the disease also.
While utilizing the Journal, we have taken photos from the beginning of the diagnosis to use as a resource to track our progress. Unfortunately, the photos have also provided validation when there has been no progress and assist the doctors in determining and recognizing when next steps are needed. We have been fortunate in having the opportunity to work with a Peer Health Coach from the IPPF. The results from these meetings have been documented and shared with our various Doctor’s so they can use these findings in their quest to determine the treatment for Joel.
In September 2009 we experienced an ugly side of pemphigus when Joel was admitted to the hospital with the diagnosis – “he is on a teeter-totter” and could go either way due to the serious side effect from this disease.
When you are given that type of information, your head starts swimming and you feel like you are on overload. I remember calling his daughter and explaining the life threatening situation. She arrived shortly, followed by his son, Brad. We had numerous conversations with numerous doctors and through this all – Brad and Ann both commented – “Thank goodness for Penney’s Journal!” as it contained numerous details from all previous doctors’ visits.
My husband, like others with pemphigus, has encountered many trials and tribulations along the way. On a positive note, while in the hospital, we were introduced to the “Wound Care” Specialists – what a fantastic group. They applied dressings that aided in speedier healing – again all captured within the journal.
Our Pemphigus Journal has and will continue to be our life-line to capture and share our experiences and learning’s while battling this disease. Before we leave for our doctor appointments, Joel always checks with me and says – “Don’t forget your journal.” He too, like me, feels it contains a mountain of information.