So much has been happening the past couple years. Justin was born, Ryan and I got back together, got engaged, rented a house, went through and LIVED through the process of buying a house and moving. That was by far the easiest things we've been through in the past 15 years we've been on and off.
I thought that the house buying process was going to be the end of us. There wasn't a day I didn't want to punch Ryan in the throat out of pure frustration. It wasn't even generally his fault. It was just shear HELL. We managed to find the place we call home and moved in. That was the 'easy' part of the past 2.5 years.
January 2012 I started having issues with my arms. I was losing all mobility in my left arm, having pain and tingling down to the bone. I started going to St. Joseph Mercy Hospital in Ann Arbor. I spent several months there fighting the Dr's trying to get a diagnosis. Finally frustrated I stopped going to my Dr. appointments. After about a month and a half the pain was getting to a point where I was unable to ignore it. I went to my Primary Care Provider for a referral. They referred me to Dr. Kachadurian. I cannot even begin to say the amazing results I received. I did several tests revealing that I went from 8-10 lesions when I saw the Dr at St. Joe's in April, to 18-20 lesions in September. I was diagnosed with MS and started my medication in October of 2012.
That was fun... As if the symptoms of MS aren't bad enough(Optic neuritis, limb pain, memory loss, limb immobility, exhaustion etc) I now had to deal with Side Effects from my medication(Flu like symptoms, headaches, exhaustion). Unfortunately, the medication doesn't seem to be having the effects I want it to. I'm still having severe flare ups. We tried Prednisone which basically was worse than my actual symptoms from MS.
After having a flare up for over a month, Dr K wrote a prescription for Acthar. The injeciton is a 5 day intra muscular injection. On day 3, before the injection I started haven't some issues with my heart. It felt like it wasn't beating right. Dr. K's office told me to not take the injection and go to the ER. So I did. SURPRISE!!!! I had multiple PVC's. Basically my heart would beat 5 times, then it would push out only about 15-20% of the blood in my heart but would recharge completely filling over the maximum capacity my heart could take. Then my heart would exert itself pushing that blood back out. It was doing this approximately 5-6 times a minute.
I was referred to a Cardiologist(I have to add here that I have some of the coolest Dr's. They are absolutely hilarious and share my sense of humor). So the cardiologist put me through several tests. The first was a Stress Echo. I had to do a stress test where I ran on a treadmill, then laid down quick to do an ultra sound of my heart. This test showed that my heart was enlarged on the right side. The enlargement was not caused by meds or sleep apnea. The next choice would be a blood clot. Dr. Grodman sent me for a CT scan which came out clear for blood clots, but showed pneumonia. I was treated for pneumonia and also scheduled a Right Heart Catheter.
The Right Heart Catheter showed that my pressure levels were normal. That led my Dr to believe that I had Primary Pulmonary Hypertension. He stated that my heart had approximately 10 years, maybe less because of the MS. Unfortunately, all the tests we did we couldn't figure out why my heart was enlarged. As a last ditch effort he wanted to try a Trans Esophageal Echocardiogram. THANK GOD WE DID. When he finished the TEE he found a hole in my heart between the left and right side of my heart.
Basically this hole was allowing unoxygenated and oxygenated blood to mix before going to my lungs, causing my lungs to not have to work as hard. It's called an Arterial Septal Defect, it's a form of congenital heart defect that enables blood flow between two compartments of the heart called the left and right atria. Normally, the right and left atria are separated by a septum called the interatrial septum. If this septum is defective or absent, then oxygen-rich blood can flow directly from the left side of the heart to mix with the oxygen-poor blood in the right side of the heart. This can lead to lower oxygen levels in the arterial blood that supplies the brain, organs, and tissues.
To fix the ASD we could either try to go in through a heart catheter with an umbrella and close it or go through open heart surgery. To be able to close it through the catheter, there has to be 5 mm of tissue on each end of the hole to connect the umbrella to. The TEE was showing the tissue measuring at approximately 2 mm. My Cardiologist referred me to Dr. Abbas at Beaumont hospital for a 3D TEE to try to see if maybe there was a chance that the tissue was bigger. Monday April 8th I went to Beaumont for the 3D TEE. There was a 10-15% chance that there was enough tissue to be able to fix it the easy way.
While I was under anesthesia, I was coughing because of a blockage. They went in and removed it. Apparently while I was down they stirred up some kind of infection. When I woke up there was a lot of pressure on my chest and I was coughing a lot. The hospital wanted to keep me over night. That night I ran a fever of 103.5. It sucked. The following 4 days sucked worse. Because my white cell count was so high due to infection the hospital wouldn't allow me to go home until it came down. I was on IV antibiotics every 6 hours for 48 hours. By thursday I was allowed to move to Oral Augmentin. Friday morning my white cell count was low enough that I was allowed to leave the hospital with a prescription for Augmentin for a week.
Today I met with my Pulmonologist, did a breathing test, everything is good and I have been cleared. Monday I go in for my pre surgery testing and my Open Heart Surgery is scheduled for Wednesday the 24th. To say the least I'm actually slightly excited. I just want to get this done and over with.
I'm exhausted. The past two years have physically, mentally and emotionally exhausted me. Whether it was from house hunting, medical issues, juggling kids, kids being sick, fighting with family, fighting with non family, stress from work, musicals, fighting with friends or just life in general. I. AM. EXHAUSTED. I try to stay positive, I try to pretend like everything is ok and nothing phases me. But that isn't true. Everything phases me. The emotional portion is the hardest. I'm not an emotional person. I don't like to cry or show weakness. Unfortunately I'm weaker than I want to be. I'm in pain a good majority of the time and I need help. I act like I'm ok and put on a pretty good facade, but when I wake up in the morning and can't physically walk... that changes everything about you. When I don't get help when I actually have the balls to come out and ask for, it hurts. I don't need much, but the little bit of help I DO need means a lot to me. Eventually, I'll stop asking for the help I'm not receiving. That will be my lowest of lows.
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