Ornah Levy Broome’s PH Story
In the summer of 2008 I weighed 500lbs. I was swimming a mile to a mile and a half each week, dieting, and not losing weight. I had been the odd duck in my family since childhood. My parents are from Israel and are slim folks, my brother was skinny, and I was… not. I had struggled with “weight issues” for most of my life, and in the year that I turned 40, I had suddenly gained a lot of weight inexplicably. Finally, with the help of my family and a few close friends I decided to seek a Gastric Bypass surgery. I found a doctor in Newport Beach (a fancy, upscale area) with a very good success rate, and started down what ended up being a 6 month long journey to a bypass surgery.
The surgeon was not a nice guy. He treated me like a loser who couldn’t control herself around food. He started me on a liquid diet, and wanted me to include 3oz of beef jerkey each day because he thought I would miss the sensation of chewing. He sent me to a cardiologist and to an eating disorder therapist. I dutifully followed all of his instructions, which allowed me to drink as much diet Sunkist Orange as I wanted. (Hint: Diet Sunkist Orange has both caffeine and sodium!)
After a month on the strict diet I had not lost much weight. The surgeon thought I was cheating on his diet and called me up to yell at me and berate me. I was in tears trying to tell him that I truly was following all of his instructions to a Tee. Meanwhile, the cardiologist I was sent to conducted a stress test and found that I had a severely enlarged right heart, and diagnosed me with Pulmonary Hypertension. He sent me to a pulmonologist who started me on oxygen and sent me for a sleep study. There, they discovered I had severe sleep apnia – I stopped breathing 90 times per hour! I started sleeping with a CPAP hooked up to my oxygen. I felt a tiny bit better, but was still being berated by the surgeon for being “manipulative” and “cheating” on his diet. I finally asked him if I could drink fewer shakes and he said “do what you need to do, but I’m not doing the surgery until you lose 50lbs!”
I cut the the shakes down to two a day. in October of 2008 I started feeling really really horrible. I was in fibrillation. I was taken to the hospital by ambulance, and it was eventually determined that I was malnurished!
Eventually I got scheduled for the gastric bypass surgery in early December. When I went in the surgeon told me there was a 70% chance I would not live through the surgery, but that if I didn’t agree to the surgery I would be dead within a year. I agreed to the surgery, said a prayer, and went into the surgery.
Fifteen minutes later they woke me up. They had canceled the surgery! They had opened me up only to find me full of fluid, not fat!! They had boipsied my liver while they were inside me, because they thought I might have cirrhosis of the liver. The biopsy report came back saying I had NO cirrhosis and NO fatty liver (which one would expect a 500lb woman to have). It was, however, the most swollen liver they had ever seen! It was swollen due to a backup of blood from my failing heart. My right heart was trying to pump blood through constricted blood vessels and failing, and the blood was backing up into my liver. They said my liver was engorged.
I was sent home from the hospital without much explanation, and told that they could not help me. I was going to have to “diet my way out of this”. (Sigh. I felt like I was back at square one.) When we got home a realized that I had lost the strength in my legs! I could no longer climb the stairs to go to bed. Before going to the hospital I used to sing songs from my favourite musicals to get myself up to bed each night… like “Climb every mountain”. It took me half an hour, and I had to stop and catch my breath after each step, but I could do it. Now, I stood at the bottom of the stairs, unable to even lift my leg up to the very first step. It was scary and disheartening.
Almost immediately upon arriving home, I discovered that I had sprung a fountain of fluid from one of the staples in my belly! We called the hospital and were told to put clean towels on my wound as a compress and return in the morning. The next day I returned to the hospital and spent another two weeks in ICU with IV antibiotics.
When I returned home I had to sleep on a hospital bed downstairs. I was now using oxygen 24/7, and even with oxygen on, my sats were at 88. My walking distance was down to four feet, and I was struggling to breathe even with oxygen on. In early January I emailed my pulmonologist to let him know that the surgery had been cancelled and that I was feeling pretty terrible.The next night my pulmonologist (Dr. Klein) called me from his house, with his baby in his arms, to let me know we had a plan! He had contacted Dr. Rajeev Saggar at UCLA and he was willing to take me on as a client! He was starting a two week rotation as head of cardiac ICU and had a bed waiting for me there.
Dr. Klein said I should go to the ER the next day and that Dr. Saggar would make sure that I got admitted. He said we didn’t have time to get me admitted through normal channels. As the next day was Friday I suggested that perhaps I should wait until Monday to go to UCLA, since nothing usually happens on the weekend in the hospital. Dr. Klein replied, “I’m not sure you’re going to live until Monday, so I REALLY think you should go tomorrow!!!”
Jonathan had to rent a van to get me to the hospital the next morning, because I no longer had the strength to climb up into the Expedition. We arrived at UCLA ER and it was completely full. I thought to myself “This is going to be an epic ER visit, good thing we had breakfast!” As they rolled me past other patients lying on gurneys in the hallways of the ER, I thought it would be hours before I would get to meet Dr. Saggar. I was wrong!
Within 15 minutes of my arrival, Dr. Saggar came down to see me, followed by an entourage of doclings! They took down my medical history, asked lots of questions, and within the hour I was being whisked up to my room in the Cardiac ICU! Dr. Saggar was different from any other doctor I had ever met (other than Dr. Klein, who is very very kind). Dr. Saggar spoke to me like an intelligent human being, not like a fat loser who was out of control. He was amazed by my ascites (swelling of my abdominal area), and explained that the fluid in my abdomen and the swollen liver were both pressing on my lungs. He couldn’t believe I was still alive!
Dr. Saggar immediately performed a right heart catheterization, and was shocked at the results. My pressures were well over 100 where normal is 24 or 25! He explained that my central veins cava is supposed to collapse in between each heartbeat, but mine was not moving at all – it looked like a fire hose! He told me to try not to cough or strain too hard because I could literally blow at any moment and he would not be able to save me. He said he was going to try to see what he could do for me, but that I needed to have my affairs in order. I told him I had just turned 40 that year and preferred to live.
Dr. Saggar was extremely worried about me. He performed daily right heart catheterizations, and immediately started me on IV Remodulin. He told me they were going to diurese me and would be starting me on lasix. I pointed out to him that previous hospitals had tried to administer lasix but that I had ended up with kidney failure. Dr Saggar explained that these other hospitals had not dilated my constricted heart-lung blood vessels! We were dilating my blood vessels first, so my heart would be able to pump blood through my body, my kidneys would be able to do their job, and I would be peeing out all the excess liquid I was retaining!!
Lo and behold, he was RIGHT!! I peed 100+ lbs in that first month in cardiac ICU, and 200lbs in the next 11 months for a total of 300lbs lost (peed!!) in one year!! By the time I left the hospital I could walk around the entire Cardiac ICU floor! Within 6 months I was off of daytime oxygen, walking 1/2 mile, and had more than doubled my 6 minute walk distance!! My heart was no longer enlarged, I was out of heart failure, and my liver had returned to normal size! Even my hair had started to grow back and thicken!
In August of 2009, for our 20th Anniversary, Jonathan and I were able to return to our favourite place: Lake Tahoe!! Lake Tahoe is at 6300′. I wore oxygen on our way up the mountain and by the next morning my body had acclimated and I could (slowly) walk on the beach without supplemental oxygen!! I had lost 200lbs by now, and Jonathan surprised me with a beautiful new dress as we were getting dressed to go to dinner for our 20th anniversary of dating!!! He had hidden it in the car and kept it hidden the whole week we had been up in Tahoe! After dinner we walked out on the pier. It was a beautiful night with the moon reflecting in the black lake. Jonathan was wearing his tuxedo. He got down on one knee, and asked me to marry him! 🙂 I was finally well enough to say YES! 🙂
Five years later, on our 25th Anniversary, we were finally married! … in Lake Tahoe, at 6300 feet elevation. We danced at our wedding, without supplemental oxygen!!