Our Story: The Importance of Keeping a Medical History

On Sunday, January 8th 2012, my 60 year-old husband, Bob, sat down at his computer and wrote out a chronological history of his life with HHT- a combination of pulmonary and stroke issues that plagued him since his thirties. He was scheduled for a doctor’s visit later that week, and he was very proactive before every appointment. He always went armed with notes and a comprehensive list of all medications, vitamins, herbal supplements and questions for his physician. I’m using his written account from that very day to relay his story to you.
To start this story, I must take you back to 1985 when a good friend of Bob’s opened up his medical practice. Looking for someone to break in his new X-ray machine, Bob agreed to have a chest X-ray. To our surprise, he discovered a large mass in Bob’s lung. Bob decided to seek another opinion. A pulmonary physician performed a needle biopsy on the large mass. The doctor declared it benign, but admitted he was puzzled by the strange mass. Bob had a strong feeling that it had something to do with HHT. His father had been diagnosed with HHT in his sixties after years of nosebleeds. Aside from causing the occasional nosebleed, we really didn’t know much about the condition. Bob had nosebleeds all his life, so he figured he had HHT also. Once we knew the mass wasn’t cancerous, and since the doctors did not indicate an immediate need to have it removed, Bob and I put his strange mass in the back of our minds and continued with our busy lives raising two young daughters.
Now, jump forward 16 years. One February morning in 2001, Bob (a former smoker) was having his first cigarette of the day. Suddenly, he started having weakness and coordination problems on the left side of his body. After being rushed to the hospital, Bob was diagnosed with a “vascular migraine”. The experience frightened Bob and he ended up needing physical therapy to regain left side functions. The doctor also discovered Bob was extremely anemic, so he started taking iron supplements as part of his daily regimen.
Then, one November morning in 2005, Bob collapsed while shaving. After a trip to the emergency room he was told that he probably experienced a TIA or small stroke. Bob had a low blood oxygen level, but his physicians assumed that smoking was probably the cause for that low number. Doctors kept him overnight for monitoring.
Finally, the hospital released Bob with a prescription for a blood thinner. Bob reminded the doctor that he had HHT and could not even take a baby aspirin. The doctor stared at Bob and asked, “Well, do you want to have a stroke?” Bob was terrified of that possibility, so we apprehensively returned home with the prescription filled. A couple of days crawled by with Bob having strange tingling and weakness again in his right hand. An emergency room doctor checked him out and said to come back if something more drastic happened. Bob felt a sigh of relief that there didn’t seem to be anything wrong, at least from the ER’s point of view. He was beginning to feel he was becoming paranoid and anxious. The doctors didn’t seem alarmed…so maybe he was overreacting?
That day, Bob and I decided to take a walk to get his mind off his health issues. Sitting down on the fireplace hearth resting from our walk, he pulled out his cell to call and check on his father. I heard him suddenly yell, “It’s happening again!” His phone dropped, and he lost consciousness as he fell backwards. I heard a strange gurgling sound and large amounts of blood spewed from his mouth. This time he was airlifted to Methodist Hospital in San Antonio, 60 miles from our home. An alert ER doctor took note of his low oxygen level and ordered a CT scan of his lung. He then discovered an AVM. The good news was…..he told us it was fixable! A mystery lasting more than twenty years was finally solved. This was that same strange mass that was discovered on that X-ray back in 1985. It took two operations to coil several large AVMs, but it was such a relief to know what was wrong with him.
At that point, Bob started being more health conscience. He stopped smoking and educated every new doctor about HHT. Bob and I flew to the HHT Center in Salt Lake City for a thorough screening. He did the genetic testing and had several CT scans and MRI’s. He commented to me that it was extremely comforting to be around a hospital staff that was knowledgeable about HHT. It was at this time that Bob became involved with the HHT Foundation and acted as a regional support person to help those who had questions about HHT. At that time, the Dallas HHT center was only a dream. Bob continued to being proactive about his health. He encouraged our daughters to pursue genetic testing. We suspected our youngest, Kelly, of having it because she had nosebleeds and her dentist detected telangiectases on her gums and lips. Shortly after Bob discovered his AVM, Kelly experienced tingling in her arm after her daily run. She noticed she was feeling out-of-breath and so she was also screened via CT scan. The results showed two small AVMs in her lung. The AVMs were coiled and Kelly is still an active runner today.
The day after Christmas 2011, Bob was helping a friend put together a new electric heater. He experienced a strange tingling once again, but quietly sat on the floor and waited a few seconds for this feeling to slip away. He continued to finish working on his project, but he made a doctor’s appointment the next day. He also wrote a question about the episode and posted it on the HHT Forum. He wanted to get to the bottom of what was causing this reoccurring ailment. Unfortunately, the next available date for a doctor’s visit was Wednesday, January 11th.
On Monday, January 9th, just one day after making that chronological history of his life with HHT Bob, awoke on a chilly day in Texas and began preparing for a business trip to Houston. He planned to return for his doctor’s appointment that Wednesday. I received a phone call around 2:30 p.m. telling me that Bob had collapsed in his customer’s office. The woman on the phone assured me that someone was giving him CPR and the ambulance was en route. I told the woman that my husband had a condition called HHT and should NOT have aspirin. At first, I felt like this was probably another episode like the one a few weeks ago after Christmas. I remained calm and quickly called his doctor and had his records faxed to the ER that he was headed to in Houston. One of our dear friends lives close to that particular hospital, so I called her and asked her to be by Bob’s side since I couldn’t be there. After two nurses answered my frantic phone calls and laid the phone down to check on Bob, I finally heard a familiar voice of my friend on the other line. She said, “Linda, it’s bad!” That is when I realized this wasn’t going to have a good outcome. My husband and best friend of nearly forty years had suddenly passed away. The people on the scene told me Bob didn’t give any indication that he was feeling sick, he had been joking and talking with his customer just seconds before he collapsed on the ground. They believed he passed quickly…even though the paramedics tried for nearly an hour to resuscitate him. I didn’t receive Bob’s autopsy report until April. The cause of death listed was hypertensive cardiac disease. The damage done to Bob’s heart in those early years from both untreated high blood pressure and his large AVM’s probably contributed to his heart failure.
Fortunately, this story has a silver lining. On July 5th, 2012, our family was given a precious gift from God. Our first grandchild, Elle, was born. Bob knew that he had a grandchild on the way in those months before he passed away. My daughter, Kelly, knowing she had HHT worked closely with John Hopkins HHT Center of Excellence throughout her pregnancy. She and her husband live in Virginia, and she insisted that her doctors have a conference call to make sure everyone was on the same page and knew of the risks of HHT and a cesarean delivery. Kelly delivered a healthy girl, and her doctors performed a brain doppler sonogram to check for brain AVM’s.
Through Elle’s birth, we feel like Bob’s legacy is living on. While he was not there to witness the birth in person, Elle’s precious smile, which is remarkably similar to Bob’s, reminds us that we can find joy in the midst of a tragic loss. It also reminds us of the importance of continuing to fight for advancement in treatment and knowledge of HHT.
Bob and I grew up in an era of watching TV shows where the doctors were bigger than life. Marcus Welby, Ben Casey, Dr. Kildare…even those guys from the Mash unit. One thing I think Bob’s story highlights is that you, the patient, must be proactive about your own health. Ask questions if you don’t understand something about your treatment. Educate yourself, and don’t be shaken if your doctor has a blank look when you mention HHT. When I had my teeth examined just recently, the dental hygienist told me how grateful she was that Bob had educated her about HHT. She visited the HHT website and passed information to her colleagues. Be a squeaky wheel and make sure you are heard.
At the conclusion of one of Bob’s earlier writings, he noted two goals. One was to work towards getting a center established in Texas. I’m excited that Bob saw that dream fulfilled. But there was something else….and I need your help with this project. Bob had a wish that someday there would be a network of physicians who understood and took an active role in treating HHT patients. What if …every man, woman, child, and those others who love someone with HHT armed themselves with information explaining this disease? It could be as simple as carrying a brochure about HHT (even printed from the website) into your doctor’s or dentist’s offices. Knowledge is a powerful tool that could prevent years of needless misdiagnosed cases of HHT.
Please join me in making Bob’s wish a reality. My family and I appreciate your help with this ripple effect. Most of all, it helps to know that even though Bob is not with us physically, his spirit of service will continue to live on in the future.