Posted 11/07/2018 by Meryl Kozina
Thank you to everyone for reaching out to check in on how my health has been. I apologize for not responding to people in the last couple of weeks- I “fell off the grid” for a while. I was admitted to a local hospital after a routine appointment a couple weeks ago and am now just getting my bearings back.
I saw my neurologist at Froedtert Hospital this past week. As most of you are aware, I was diagnosed with MS six years ago and with an autonomic dysfunction syndrome two years ago.
In seeking a second opinion because of the severity of my symptoms and general health decline, my neurologists at Froedtert questioned both of my initial diagnoses. As of right now, they are continuing with my diagnosis and treatment of MS- however are going to further test for other diseases that mimic MS. They have explained to me that “my” MS is very atypical to the disease and they have not seen a case quite like mine. However... parts of my scans, symptoms and tests do give the impression of a disease that is causing damage to the Central Nervous System. I also received a new diagnosis; it still is a type of syndrome associated with my automatic system... it just happens to be a very rare subset of the syndrome- causing my cardiovascular, hepatic and digestive systems to malfunction.
Froedtert Hospital has one doctor who specializes in my syndrome; however I am not able to have my first appointment with him until next September (we were told people fly in from all over the country to see this specific doctor). I guess my syndrome is so rare that there are only a handful or so of doctors in the US who treat my subset type. We have located a few other doctors in other states and will be contacting them about possibly being seen sooner. We are considering Minnesota, Ohio, Arizona and Virginia- let’s hope for the closer ones😊!
A syndrome is caused by a underlining disease... so in the meantime Froedtert will continue to try to uncover this important piece of the puzzle. I have also started in home nursing, PT and OT that will hopefully help me achieve some goals- better physical conditioning, getting out a little more socially and driving.
We would like to add two more weeks of help with getting the girls to school- we know this is asking a lot, as everyone has already done so much to help us, so please do not feel obligated!!! We will add those sign ups for the last week of November and first week of December. After this we will be taking down the site. I would like to still write a health update either through email or Facebook to keep people in the loop.
My brother’s family had also planned a getaway with them last spring and are insisting that I take this time with them, Kevin and the girls. If my doctors and my body tell me I am able to make the trip we will be going with them for a week in December. I think some time with family and warm weather will be a welcomed change.
We have so much appreciation for all the outpouring support we have received from the Mealtrain Website and beyond- Thank you!!!
Take Care and God Bless💜
The McCarthy Family
Treatment and Care Update
Posted 10/11/2018 by Meryl Kozina
It has been a while since I touched base with everyone on the progress of my treatment and care plan. My first visit to Froedtert Hospital’s Neurology Department was the best medical care I have received in the six years of being diagnosed with MS.
My main Neurologist is detailed oriented, professional and genuinely concerned about my care- he spent two and a half hours with me, knew my health history details inside and out and actually listened, encouraging me to be more detailed. After an hour into our visit, I kept getting my items ready to leave... finally he asked me if I needed to leave? I explained to him that I had already gone fifteen minutes past our appointment time and did not want to inconvenience anyone. He gave me a bewildered look; explaining that he needed to be as thorough as possible to begin my care with the Neurology team of Doctors and Froedtert Hospital. I had to “clean my ears out” and pinch myself... this was not the norm for me... was this really happening- it was wonderful and very refreshing!!!😊
The outcome of my first visit was not what we expected. Froedtert has uncovered many questions about my health issues that they are now starting to “unravel”, reavaluate and then start a treatment or care plan. They started with testing both at Froedtert and Mayo; as results come back, they will either diagnosis or keep testing further. Froedtert has reached out to UW Madison and GHC; they both have agreed to collaborate with Froedtert and Mayo. Hopefully with all of the medical teams working together; we will have professional and expedited answers with the correct diagnosis and care.
We are so appreciative to have all the outpouring support our family has received; we are truly blessed to have your acts of kindness, thoughts and prayers💜
Take Care and God Bless🙏
The McCarthy (Kozina) Family
Note of appreciation
Posted 09/17/2018 by Meryl Kozina
We want to first and most importantly thank everyone who has helped our family during a time in our lives where, if not for all the acts of kindness we would not be able to cope as well. Every text, call and visit to check in and see how we are, offering additional help and words of encouragement has given us comfort and hope when we need it the most. We are so fortunate to have all the positive emotional support as well as the volunteering of your time and the very generous donations.
I will be meeting my team of physicians at Froedtert Hospital in Milwaukee next Tuesday. I am looking forward to Froedtert’s approach on my care; WOW I have a team of doctors who have been reviewing my records from UW Hospital, networking together and putting together a starting point in my treatment and care. As most of you know, I have complications from MS which involve autonomic dysfunction. I will give as detailed updates of my treatment and care as I can. Reagan and Riley know the “basics” of my health issues however, need not know any of the serious problems at this time. They have had two years of issues nobody’s children should ever have to deal with; needless to say they are having a difficult time coping with upcoming daily changes and the unknown of my traveling for my care.
Our thanks and appreciation can only begin to describe how fortunate we are to have so much support💜
The McCarthy Family