A Mom's Story

By Linda Brown, Florida
December, 2007

 


My son, Kevin, developed asthma about 3 years ago. I thought it was strange, but he was going to an allergist and his doctor regularly, so I knew he was taking care of it. He said his asthma was resistant to common drugs, but there was a drug called prednisone that is a miracle – it works in a matter of hours to cure all of his problems. I had a horrible allergy attack around that time, and the allergist prescribed prednisone for me, too, and I sat with Kevin and waited for my almost immediate recovery. It didn’t happen. We couldn’t understand why his miracle cure did absolutely nothing for me.


In May, 2006, my son visited my sister- in –law in Seattle where he became so ill that he could barely walk and breathe at the same time. I know my sister-in-law, who is a nurse, was concerned about how sick he was during the visit, but Kevin just kept going. He knew there was something wrong, but all the doctors just assured him he was fine. We all assumed it was just some kind of “bug”.


After Kevin and Olivia returned from their trip, Kevin saw his allergist who took him off the prednisone and gave him a prescription for tests and X-rays which would have confirmed her suspicions that Kevin could have a rare disease – Churg Strauss. However, she did not mention her suspicions to Kevin because she wasn’t sure. She knew there was something very wrong. Then Kevin began complaining that his legs were numb. That alarmed me, but the doctors kept telling him he was fine. On June 12, he went to the Urgent Care Center where the doctor noticed that his pulse was rapid, diagnosed him as anemic, and sent him back to his primary care doctor. He didn’t make it to his appointment for the tests the allergist wanted – the ones that would have made all the difference in the world.


June 13 was my wedding anniversary, and at that time my husband and I were in San Francisco on a business/vacation trip – our first to San Francisco. As we were having lunch on Fisherman’s Wharf, I got a call from Olivia saying that Kevin was too sick to get out of bed. I immediately called Kevin to ask him what was going on, but he assured me that he wasn’t feeling that badly. Throughout the day I was on the phone almost constantly with Olivia and Kevin about what they were going to do, and how Kevin was feeling. They made a decision to go to the emergency room expecting to be given a prescription and some reassurance that all was well. I was worried, but I had no idea what was coming. My husband took numerous pictures of me that day, and in every single one I had a phone to my ear. I still find the pictures difficult to look at as I remember each one of those phone calls. Later that evening we were having an anniversary dinner with my niece when I got a call from Olivia – Kevin had a heart problem, and immediate surgery was necessary. It was serious and nobody could tell the outcome. NEVER does a mother expect to hear that her 29 year old son has entered a hospital with pericarditis, myocarditis, and tachycardia. I didn’t even know what all of those were! You have no idea how far San Francisco is from Miami until you have to get home immediately. My husband and I threw our things into our car and drove in the middle of the night to L.A. to catch the earliest plane home. We were crying, and I had a horrible time trying to keep myself from going totally hysterical. For the first time ever there was the possibility of being forced to face life without my precious son. Losing my “baby” was just not something I could survive, and I knew it. Mothers aren’t supposed to outlive their children. This wasn’t supposed to happen until I had been dead and gone for decades.


We arrived at the hospital about midnight on June 14th, and we were allowed into the ICU to see our son. As we got there, my daughter-in-law looked me in the eye and demanded that I keep myself together. She said that Kevin and I are so close that he will look at me and know exactly how bad he is if I didn’t go in there and smile and stay upbeat for him. I knew what she said was true. My heart broke as I saw my son there with all of the tubes and monitors and the huge bandage on his chest. I forced myself to smile and tell him he looked great and was going to be fine. Only later did I learn how important that visit was to him, and how much he depended on our reaction to tell how sick he really was. We could only stay a little while, so my act didn’t have to last very long. I sobbed the rest of the night in total disbelief that this was happening to my son.


Fortunately, my daughter was there to help me get through all of this. She also was just devastated that her little brother could be so ill. My older son was there, too, and without them and Olivia, I am not sure I could have gotten through this horrible ordeal. The pulmonologist was wonderful, and she came to us in the ICU with some encouraging news that at another time would have destroyed us – she believed he could have Rheumatoid Arthritis. Finally something they could treat! I didn’t care what it was – just find something to save my son! Prednisone was clearing his lungs up, and within a day the pulmonologist said she thought it was “Church something” and that it is treatable. I still didn’t care what that strange word was. All I knew is we spent our time in the ICU watching Kevin’s heart rate go from a deadly 180 beats per minute to 130. Kevin has low blood pressure normally, so when he needed the medications to slow his heart rate, it also lowered his blood pressure to dangerous levels. Still there was “Dr. Doomy Gloomy” who said he didn’t know if Kevin would survive or not. I remember the anger I felt when he put his hand on my shoulder and said, “Your son might get better, or he might not.” What kind of statement is that? I was so mad I could have hit him. I hated seeing him, and I refused to listen or believe what he had to say. The pulmonologists said prednisone would save Kevin, and Doomy Gloomy said it would kill him. Meanwhile we were losing precious time “curing” my son.


Finally, old Doomy Gloomy decided that Kevin should be transferred to Jackson Memorial Hospital where they are the best in diagnosing heart problems and strange diseases. He also talked about heart transplants and other devices that I had never heard of – never WANTED to hear of. Finally, we felt hope as numerous doctors and interns and residents worked on Kevin’s case. Soon we got a diagnosis – Churg Strauss Syndrome. Olivia and I went back to the first hospital and took cookies to the ICU to tell the nurses and the doctors that Kevin had been diagnosed with CSS – just as they had thought! We were all thrilled with the fact that Kevin would survive – that’s all that mattered to us at that point. How he got something so rare is still a mystery. It always will be.


Then Olivia and I began to research this disease, and of course, we expected to see that it’s some strange ailment that can be cured easily and life would go on as usual – never did we expect to read what we found. The panic that went through me was almost as bad as that phone call in San Francisco. The infectious disease doctor told us he wouldn’t see us again since Kev was diagnosed CSS, and he said not to worry, it’s going to be fine. He advised Kev to go home and relax in his hammock with a cold drink. That isn’t what we saw at all in our research. We saw unthinkable things that we wouldn’t even let Kevin read. Suddenly we were aware of every mention of CSS. House had an episode where a nun had CSS, and as they diagnosed her, the doctors started talking about how she would only live 5 years. Since then we have learned that is definitely NOT true, but at that time, it was pretty frightening. Didn’t anybody ever get well? There didn’t seem to be any answer. Our joy at a diagnosis and treatment was very short-lived.


Meanwhile, Kevin finally got to go home. We were thrilled. Before he left the hospital, Olivia and I went to CVS and bought a cane for Kev since he had nerve damage in his feet and legs. As I stood there buying that cane, once again the agony of my son’s illness hit me. What mother expects to buy a CANE for her 29 year old son? This is my son who could do ANYTHING!! He finished all of his doctoral studies in record time and had a great job and a great wife. How can I be buying a cane for him? Why not for me? I’m in my 50’s, and I prayed to God every single day to just cure Kevin and do whatever to me. I took Olivia home, and after she got out of the car, I cried hysterically all the way home. I arrived with an HOA meeting going on in my family room, and they all were alarmed when I came in with tears streaming down my face and sobbing. 

I spent the summer seeing Kevin every day. Fortunately, I’m a teacher, so I wasn’t working. Olivia and I spent hours massaging Kevin’s feet as the nerves repaired themselves. Kevin is convinced that the constant massaging and moving of his feet helped him recover from the severe drop foot he had. He still has damage, but people who don’t know about it would never see the very slight limp he has. Kevin continued to get better and try to adjust emotionally to the illness he would live with for the rest of his life – hopefully a LONG and happy life in spite of CSS.


I finally had to go back to school. It was hard. I would take crying spells for no reason at any time. My students knew my son had an autoimmune disease that had just destroyed me. I was still trying to deal with the pain of all that had happened to all of us the weeks before. If I talked about it, I would cry. People were very nice and understanding, but there is the hurt and anger that never seems to go away. I had been writing to a young lady named Kate Tierney and her mother Pat, and they gave me so much comfort and hope. Pat understood when I wrote of how helpless I felt. She had been there, too. I still write to Pat and Kate. I think I probably always will.


As time has gone on, things have become easier. Kevin is one of the lucky ones. He will never run again, and he will always have CSS, and prednisone will always be our miracle drug, but he’s alive and living a normal life with a not so normal disease. We all went to Hawaii this year on June 13 to celebrate the remarkable recovery he has made and to celebrate another anniversary while we made new and happy memories to dull the pain of the year before. He and Olivia are having a little boy in January who will be named John Oliver, and life is wonderful again. I still find myself massaging Kevin’s feet when he is lying on the couch or sitting with his feet up on the cushion. It’s just what we did for so long. It reminds me of where we started and how far we have come. There is so much life ahead of all of us, and we appreciate it so much more than before. I thank God everyday for the miracle he gave me – my son.

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