My name is Lisa. My husband, Robby, had been sick with a sinus infection since September. He would go to the doctor, they’d give him antibiotics and he’d get a little better and then would become sicker once again. Weird things were happening at the same time, such as he would get a tingling sensation from the top of his head down the middle of his forehead, he would drink a beer and his sinus’s would become so inflamed he would sneeze and sneeze. Then he got to the point where his joints ached and ached, one day it would be his shoulders, then elbows, it got to the point where he could hardly walk due to the fact that the bottom of his feet hurt so bad.
During all of this we went to our family doctor several times and things weren’t getting any better, we were told he just has a sinus infection and it has to run its course. We didn’t agree with that, so he went to see an ENT doctor by the name of Dr. Nathan Burroughs. He checked Robby out, gave him really strong antibiotics and said come back if you aren’t any better. Several days later, we were back at his office. He examined Robby again and this time he sent Robby for lab work and on the script it said ANCA, I remembered seeing that when I was doing research on the web trying to see if Robby had some sort of myalgia disease.
I know enough about medical care to be dangerous; I’ve worked in the field since 1992. So I got back on the internet to research the ANCA test and what I found made me think that my world was coming to an end because the information I found said Wegener’s granulomatosis patient’s only live up to 7 years. I kept my secret to myself during that long weekend because I was hoping against all hope that Dr. Burroughs was wrong, and I didn’t want to upset Robby and our 2 daughters, Amanda 19 and away at college and Ashley who was getting ready to turn 21 next month.
During this time frame Robby was home in bed so sick he could hardly walk and while he was laying there our new puppy, Pierre was right there with him. Those two had basically become one. Robby slept, Pierre slept, Robby got up to eat something, and so did Pierre. When we first got Pierre, his little ears were straight up (Toy Fox Terrier), but the sicker Robby became, the more Pierre’s little ear drooped, to the point it was bent all the way over.
We received news from Dr. Burroughs that Robby’s ANCA test came back positive and that he needed to come back in for a biopsy of the nose to see if they could get a diagnosis of WG from the tissue. That was done and we were told to see a rheumatologist as soon as possible. We called the one he recommended, Dr. Cameron Jones, and were told it would be several months before Robby could see him, I told them we didn’t have several months to wait. It worked out that Robby was able to see him the next week. We took the ANCA test and the biopsy results and met with Dr. Jones. He immediately started Robby on Cytoxan and a high dose of prednisone and of course other medications to counter act those medication effects on the body.
It seemed like almost immediately Robby was feeling better and the Saturday that Robby felt almost back to normal (what his new normal is after WG), Pierre’s little ear was straight back up, that’s how in tune that little dog was with Robby. Within 6 months of starting treatment Robby was in remission and was transitioned from Cytoxan to Methotrexate. Robby would go for monthly visits in the beginning and I would go along with notebook in hand and all of our questions written down that had come up since the last visit with Dr. Jones. He would answer all of our questions and took time each visit with us to do so, he never hurried us. Once Robby was transitioned from Cytoxan to Methotrexate he went to see Dr. Nabih Abdou for a second opinion. We learned about Dr. Abdou from the VF Newsletter. Robby transferred his care from Dr. Jones to Dr. Abdou just for the fact he is an expert in WG. Dr. Jones was a great doctor and by transferring his care to Dr. Abdou was in no reflection against the care that he received from Dr. Jones. Robby felt very lucky to be able to see an expert in his disease. Dr. Abdou has told Robby he has “Limited WG” and we feel it was because of early detection of the WG. Robby was taken off of all medications in the early fall of 2006!
During Robby’s treatment, Pierre died of microscopic liver shunt disease (a form of vasculitis in dogs) in February of 2006. I truly believe Pierre was brought into Robby’s life to help him thru his treatment and illness and once Robby was better, Pierre was called to go help another person in need. We miss that little guy like you wouldn’t believe. Robby said he, on those really rough days in the beginning, was so glad to have Pierre by his side.
Robby’s disease flared in May of 2007, the day I left for a trip to go overseas to see our daughter who was studying abroad at the time. I was not even thru the security check point and he stepped out of the doors at the airport and had a nose bleed. He had another nose bleed 2 days later that lasted for 30 minutes. He called Dr. Abdou’s office and went in for a visit and was started back on Methotrexate and prednisone. The flare was brought on by the stress of my leaving. Stress is one of the worst things for a WG patient.
Robby is due to come off all medications once again the first of March and I have promised not go on any trips that do not include him. He has learned his limitations, with gentle reminders from me time to time. He has learned that keeping stress at bay is very important to his daily life. We know Robby’s prognosis is a lot better than what I initially read on the internet especially with the help of Dr. Burroughs’ knowledge of detecting WG and getting treatment started in the early stages of the disease. One of Robby’s sayings is “It is what it is” and that is how he takes life one day at a time, he knows he can’t control WG but he does not let WG control him.
Published: May 2009
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