On Feb 23rd I was admitted to the hospital with severe pneumonia, sepsis, and renal failure. This was the second time this had happened to me. The first time was in 2011. At that time I thought I had the flu so I just laid in bed dying having no idea I was so ill. When I finally went to my doc they rushed me straight to ICU and said if I had waited any longer I would have died. WTF? I was only 39! I had never gotten pneumonia in my life! I had no idea pneumonia happened to anyone younger than 70 and had no idea you could die from it. The infection spread all through my blood and was about to start shutting my organs down. 3 days of IV antibiotics and I was good as new. Over the next 6 years I got pneumonia or bronchitis or sinus infections or peritonsillar abscess or some weird ass shit every single year in Feb. Beyond annoying. But I was scared to let it go so I went to the doctor immediately if I felt bad to try to get it taken care of quickly so I wouldn't go septic again. This last time I went to urgent care in plenty of time but they misdiagnosed me with the flu even though the flu test was negative. 2 days later I told Matt I needed to go the ER. Sure enough I was septic again ugh. I had a doctor taking care of me named Dr. Cesar Munoz. He's a pulmonologist and he would update me every day on my situation. I was on 30 liters of O2 a minute and getting x-rays, cat scans, blood tests, all kinds of tests daily. I see my allergist every year who takes care of my asthma and we've always just been under the impression that asthma has weakened my lungs and I'm more susceptible to pneumonia than most people. We just never really questioned it. This doctor did. He told me I was anemic one day. I was like WHAT!? I get a physical every year, surely I would know if I was anemic. So I messaged my primary and said, "this guy says I'm anemic and have been for a while, it wasn't just a bad test result because I was in renal failure, is this accurate?" He replied that I've never been anemic but he never answered me about if he actually tested me for that or if i had just never been diagnosed with that because they never checked for it. So this information was confusing, was I anemic or not? I googled anemia and there's just no reason why I should be anemic because I eat a shit ton of red meat. Then he told me my immunity system was compromised and he was certain something was compromising it and that's why I kept getting pneumonia. I had a follow up appt with Dr. Davis my allergist and I mentioned this. He said he tested my immunity system back in 2011 after my first pneumonia and it wasn't just good, it was off the charts amazing and strong. He said there was no problem with my immunity then and he doubts anything had changed in 6 years but he would be more than happy to test me again to be certain. Both doctors agreed I needed a new immunity test but that it should be done at least 6 weeks after I left the hospital when I was "healthy" because all the steroids I had been on would certainly sku the results. Ok so I left the hospital after 5 days in the ICU and 1 day in a regular room and was told to follow up with my primary, Dr. Munoz the pulmonologst, and Dr. Davis my allergist. Dr. Davis met with Dr. Munoz because they both have offices at St. Clare and they wanted to get to the bottom of why I kept getting pneumonia every year. Dr. Munoz can do more than Dr. Davis because he's a pulmonologist so they agreed I needed a PFT or pulmonary function test, and a new immunity test and they would go from there. I was discharged with antibiotics and told to get an x-ray in a couple weeks to make sure the pneumonia was going away and I went home on March 2.
2 weeks later on Wednesday, March 15th I took the kids to the dentist for their semi annual cleaning. It was at Des Peres Hospital. I had felt bad all morning but had stuff to do so I blew it off. Nick was on spring break, which sucked this year because the weather was cold and rainy and I was recovering so we didn't go anywhere or do much of anything. Anyway, I called Matt who happened to be home, and said I wanted to go downstairs and get checked out- could he come get the kids. Since we had met our deductible I figured it's better to be safe than sorry. He did and they did an x ray right away and drew blood. My infection was back and the pneumonia looked bad. They wanted to do a cat scan to determine if the spot on my lung was a pulmonary embolism or pneumonia. It was pneumonia. We started worrying that I was becoming antibiotic resistant. They decided to give me 2 different really strong antibiotics by IV and then send me home with oral abx. I was cool with that.
Felt great the next day and by Saturday I felt awful again. I took my daughter to gymnastics at 9 and then told Matt I wanted to go back to St. Clare to get checked out. Guess what I had a fever, white blood cell count was high, I was infected again. Now I'm like really angry, thinking WHY WON'T THIS PNEUMONIA DIE ALREADY!??? Dr. Munoz and Dr. Davis agreed that I needed a bronchoscopy. They didn't do any procedures on the weekend so they scheduled it for early Monday morning. They knocked me out and I felt nothing, it was painless even after I woke up. Dr. Munoz told me my lungs were really reactive which suggested to him that maybe my asthma wasn't under control after all and maybe these yearly pneumonias were asthma attacks? I hadn't considered that. Dr. Davis and I felt that my asthma was under control because I had not had an attack in over 20 years and every year when he measured my lung function it was always close to 100 percent. So this was something new to consider. Dr. Munoz went into my lungs with a scope and took samples for biopsy and samples to culture to see if bacteria, or virus, or something else was in there causing problems. He said the test results could take up to 3 days. So I sat in the hospital waiting. This time I was in a regular room and feeling pretty good and not hooked up to any machines so it wasn't a bad stay at all. Wednesday we finally got the test result we were waiting for. The pneumonia I had only responded to steroids, not antibiotics. This explains why I was feeling better because Dr. Munoz had started me on prednisone on Saturday to get the inflammation down. This explains why my pneumonia wouldn't die! So they prescribed me with new meds and sent me on my way. I was so glad to know what was going on and so relieved to know I would finally kick this thing and get on with my life. I went home on Wednesday, March 22.
I followed up with my doctors and had 2 appointments left- the appt with Dr. Munoz and an appointment with a cardiologist. My echocardiogram in the hosp was a bit sluggish and they don't know if it was because I was so sick or if there's an issue with my heart so they advised repeating the echo a few weeks later. My appt is next week so I'll keep you posted on that.
My appt with Munoz was last Wednesday, April 12, 3 weeks after I left St. Clare. I did a PFT first which took about an hour. I sat in a booth with a tube in front of me and the nurse had me do different exercises while blowing into the tube. Sometimes I had resistance, sometimes they used oxygen, sometimes I had to hold my breath and then blow hard, it was a bunch of different things. She gave me the results and then I waited for my appt upstairs with Munoz. I immediately googled my results and they looked ok. I was in the low end of the normal range but still in normal range. Ok so I thought that was good but still doesn't explain if there's an issue with my lungs or not. When I went in to see Munoz he started talking again about how something had lowered my immunity and that was causing me to get recurrent infections. I wasn't sold on this because your immunity will be compromised when you're severely ill, so I wasn't really buying that. Then he told me that there was a protein in a urine test in the hospital that was consistent with multiple myeloma. UM WHAT? Say that again? No one mentioned that when I was in the hospital why is he telling me this now? He was being really vague. I kept pressing him for information. He just said something was affecting my immunity and I said WHAT could cause my immunity to go down in just 6 years? He finally said, well, cancer. He also said that the fact that I was anemic was concerning because multiple myeloma is a cancer of the plasma in your bones and it causes a decreased production of red blood cells by the bone marrow. So this would explain why I was anemic. He said he wanted to do a blood test that would give us an answer for sure. He told me he had consulted an oncologist about my case already and they felt because of my age and the fact that the protein in my urine sample was low that it was unlikely that I had cancer. I said yes let's do the blood test we need to rule this out. They told me it would take about a week to get results because they had to send it out. I figured I'd hear something Wed and went and picked Nick up from school.
I had an amazing Easter with my family on Sunday. We went to church and they have an orchestra now and when they played "Jesus Christ is Risen Today" I got goosebumps and tears in my eyes. It was a great service about how God is able and will help you overcome any obstacle. I sat with my dad and stepmom and then we went over to my brother's house and had an egg hunt for the grandkids and a great brunch with family. I missed my baby sister who is in Africa but had a great time with everyone else in the family that I don't get to see all too often.
Monday morning my phone rang and I didn't recognize the number. It was Dr. Munoz and he wanted to give me my test results. He told me he was sorry but that I needed an oncologist. I was floored. I honestly was expecting that this was all a mistake. He started to give me the name of an oncologist at St. Clare and I said I don't mean to be rude but I'm going to Siteman. It's one of the best cancer facilities in the country. I asked him exactly what test he ran and what my results were. He told me my light chains were elevated and that he was pretty sure I had MGUS. Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. The protein is produced in a type of white blood cell (plasma cells) in your bone marrow. MGUS usually causes no problems. But sometimes it can progress over years to other disorders, including some forms of blood cancer.
I had been told by a few people that Dr. Ravi Vij was the best around for multiple myeloma. After I called my husband and told him I called Dr. Vij's office at Siteman. They said he was out of the office for a few weeks but that anyone in his office would be great because they all work together and confer together. They told me they needed to see these test results and submitted a records request. She said after they received them and looked at them they would call me and let me know what the next step was. She said usually it's a bone marrow biopsy. So that's where we are right now. I don't know much except that it seems that we caught it early. Myeloma seems like ovarian cancer where it is silent and doesn't cause many problems until it's too late.
I am actually really grateful that Dr. Munoz caught this when he did. Both of my long time doctors had no idea about any of this, hadn't checked, probably would never have checked, and I wouldn't have known I had cancer until it was way too late. I only have limited information about my case but it seems like it's early and early detection is the key. I've been down this road with my mom. She died of cancer. I held her in my arms as I felt her heart beat slow down and then stop. She felt a lump in her breast in 2000. She mentioned it to me and I kept telling her to go get it checked out and she blew it off. By the time she did it had spread to all her lymph nodes on the right side. She had surgery to remove the lump and the lymph nodes but I knew if it had spread then it was probably in other parts of her body. She did chemo and radiation and was fine for a couple years....but then it was back all over the place. It was in her bones, liver, brain, and lungs. She was a smoker with a pack a day habit. Her lungs were a mess and she was gone January 1, 2006- 6 months after being diagnosed. I took her to all her appointments at Siteman and took care of her at the end. I'm so glad we had that time together. We knew the end was coming and she was able to put all her affairs in order and prepare as best as possible.
Yesterday after I got the news I was a mess. I was pissed, I was sad, I was scared, I questioned God, my emotions were all over the place. Today I feel more at peace with this. I firmly believe everything happens for a reason and that I will be ok, no matter what happens. I've almost died several times now and I'm not afraid. I try to make the most of each day because I do know that life can end in an instant, so seize the day. I love having fun and experiencing everything. I'm gonna keep on doing that with my kids, my friends, and my family for as long as possible. Life is a gift to be cherished!
2 weeks later on Wednesday, March 15th I took the kids to the dentist for their semi annual cleaning. It was at Des Peres Hospital. I had felt bad all morning but had stuff to do so I blew it off. Nick was on spring break, which sucked this year because the weather was cold and rainy and I was recovering so we didn't go anywhere or do much of anything. Anyway, I called Matt who happened to be home, and said I wanted to go downstairs and get checked out- could he come get the kids. Since we had met our deductible I figured it's better to be safe than sorry. He did and they did an x ray right away and drew blood. My infection was back and the pneumonia looked bad. They wanted to do a cat scan to determine if the spot on my lung was a pulmonary embolism or pneumonia. It was pneumonia. We started worrying that I was becoming antibiotic resistant. They decided to give me 2 different really strong antibiotics by IV and then send me home with oral abx. I was cool with that.
Felt great the next day and by Saturday I felt awful again. I took my daughter to gymnastics at 9 and then told Matt I wanted to go back to St. Clare to get checked out. Guess what I had a fever, white blood cell count was high, I was infected again. Now I'm like really angry, thinking WHY WON'T THIS PNEUMONIA DIE ALREADY!??? Dr. Munoz and Dr. Davis agreed that I needed a bronchoscopy. They didn't do any procedures on the weekend so they scheduled it for early Monday morning. They knocked me out and I felt nothing, it was painless even after I woke up. Dr. Munoz told me my lungs were really reactive which suggested to him that maybe my asthma wasn't under control after all and maybe these yearly pneumonias were asthma attacks? I hadn't considered that. Dr. Davis and I felt that my asthma was under control because I had not had an attack in over 20 years and every year when he measured my lung function it was always close to 100 percent. So this was something new to consider. Dr. Munoz went into my lungs with a scope and took samples for biopsy and samples to culture to see if bacteria, or virus, or something else was in there causing problems. He said the test results could take up to 3 days. So I sat in the hospital waiting. This time I was in a regular room and feeling pretty good and not hooked up to any machines so it wasn't a bad stay at all. Wednesday we finally got the test result we were waiting for. The pneumonia I had only responded to steroids, not antibiotics. This explains why I was feeling better because Dr. Munoz had started me on prednisone on Saturday to get the inflammation down. This explains why my pneumonia wouldn't die! So they prescribed me with new meds and sent me on my way. I was so glad to know what was going on and so relieved to know I would finally kick this thing and get on with my life. I went home on Wednesday, March 22.
I followed up with my doctors and had 2 appointments left- the appt with Dr. Munoz and an appointment with a cardiologist. My echocardiogram in the hosp was a bit sluggish and they don't know if it was because I was so sick or if there's an issue with my heart so they advised repeating the echo a few weeks later. My appt is next week so I'll keep you posted on that.
My appt with Munoz was last Wednesday, April 12, 3 weeks after I left St. Clare. I did a PFT first which took about an hour. I sat in a booth with a tube in front of me and the nurse had me do different exercises while blowing into the tube. Sometimes I had resistance, sometimes they used oxygen, sometimes I had to hold my breath and then blow hard, it was a bunch of different things. She gave me the results and then I waited for my appt upstairs with Munoz. I immediately googled my results and they looked ok. I was in the low end of the normal range but still in normal range. Ok so I thought that was good but still doesn't explain if there's an issue with my lungs or not. When I went in to see Munoz he started talking again about how something had lowered my immunity and that was causing me to get recurrent infections. I wasn't sold on this because your immunity will be compromised when you're severely ill, so I wasn't really buying that. Then he told me that there was a protein in a urine test in the hospital that was consistent with multiple myeloma. UM WHAT? Say that again? No one mentioned that when I was in the hospital why is he telling me this now? He was being really vague. I kept pressing him for information. He just said something was affecting my immunity and I said WHAT could cause my immunity to go down in just 6 years? He finally said, well, cancer. He also said that the fact that I was anemic was concerning because multiple myeloma is a cancer of the plasma in your bones and it causes a decreased production of red blood cells by the bone marrow. So this would explain why I was anemic. He said he wanted to do a blood test that would give us an answer for sure. He told me he had consulted an oncologist about my case already and they felt because of my age and the fact that the protein in my urine sample was low that it was unlikely that I had cancer. I said yes let's do the blood test we need to rule this out. They told me it would take about a week to get results because they had to send it out. I figured I'd hear something Wed and went and picked Nick up from school.
I had an amazing Easter with my family on Sunday. We went to church and they have an orchestra now and when they played "Jesus Christ is Risen Today" I got goosebumps and tears in my eyes. It was a great service about how God is able and will help you overcome any obstacle. I sat with my dad and stepmom and then we went over to my brother's house and had an egg hunt for the grandkids and a great brunch with family. I missed my baby sister who is in Africa but had a great time with everyone else in the family that I don't get to see all too often.
Monday morning my phone rang and I didn't recognize the number. It was Dr. Munoz and he wanted to give me my test results. He told me he was sorry but that I needed an oncologist. I was floored. I honestly was expecting that this was all a mistake. He started to give me the name of an oncologist at St. Clare and I said I don't mean to be rude but I'm going to Siteman. It's one of the best cancer facilities in the country. I asked him exactly what test he ran and what my results were. He told me my light chains were elevated and that he was pretty sure I had MGUS. Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. The protein is produced in a type of white blood cell (plasma cells) in your bone marrow. MGUS usually causes no problems. But sometimes it can progress over years to other disorders, including some forms of blood cancer.
I had been told by a few people that Dr. Ravi Vij was the best around for multiple myeloma. After I called my husband and told him I called Dr. Vij's office at Siteman. They said he was out of the office for a few weeks but that anyone in his office would be great because they all work together and confer together. They told me they needed to see these test results and submitted a records request. She said after they received them and looked at them they would call me and let me know what the next step was. She said usually it's a bone marrow biopsy. So that's where we are right now. I don't know much except that it seems that we caught it early. Myeloma seems like ovarian cancer where it is silent and doesn't cause many problems until it's too late.
I am actually really grateful that Dr. Munoz caught this when he did. Both of my long time doctors had no idea about any of this, hadn't checked, probably would never have checked, and I wouldn't have known I had cancer until it was way too late. I only have limited information about my case but it seems like it's early and early detection is the key. I've been down this road with my mom. She died of cancer. I held her in my arms as I felt her heart beat slow down and then stop. She felt a lump in her breast in 2000. She mentioned it to me and I kept telling her to go get it checked out and she blew it off. By the time she did it had spread to all her lymph nodes on the right side. She had surgery to remove the lump and the lymph nodes but I knew if it had spread then it was probably in other parts of her body. She did chemo and radiation and was fine for a couple years....but then it was back all over the place. It was in her bones, liver, brain, and lungs. She was a smoker with a pack a day habit. Her lungs were a mess and she was gone January 1, 2006- 6 months after being diagnosed. I took her to all her appointments at Siteman and took care of her at the end. I'm so glad we had that time together. We knew the end was coming and she was able to put all her affairs in order and prepare as best as possible.
Yesterday after I got the news I was a mess. I was pissed, I was sad, I was scared, I questioned God, my emotions were all over the place. Today I feel more at peace with this. I firmly believe everything happens for a reason and that I will be ok, no matter what happens. I've almost died several times now and I'm not afraid. I try to make the most of each day because I do know that life can end in an instant, so seize the day. I love having fun and experiencing everything. I'm gonna keep on doing that with my kids, my friends, and my family for as long as possible. Life is a gift to be cherished!
I love your positive outlook on life. You are amazing and are most certainly going to be ok! Hugs to you, my friend!
ReplyDeleteKeep your faith. God's got you. You are amazing! I will keep you in my heart and in my prayers, Angie.
ReplyDelete