The Journey to Health: Part 1 Overcoming Heart failure
In 2012, I had ventured into seeing my THIRD rheumatologist. The first rheumatologist I saw wasn't helpful at all. The second one I LOVED but she was always 2- 3 hours behind no matter what time we went to see her, and she was half an hour away. She had helped me get diagnosed with serum negative rheumatoid arthritis, Sjogren's, and was still poking around to figure out some other things for me. I was started on Methotrexate shots, which I gave myself at home, to try to prevent further damage. I was also started on plaquenil. In the beginning, I had every side effect known to happen with both of those medications, in 2011 I got to the point I couldn't work any more. The diseases that I had and knew about, as well as the ones yet to be figured out, had wreaked so much havoc on my body I didn't have anything left for my little girls. I had been a very dedicated volunteer at church, I had just finished my Healthcare management degree, going to school full time, on top of working and essentially raising my little girls by myself, and now I could barely walk or get out of bed. Leaving my career broke my heart. I'll go into that another time. This Dr saw me at some of my worst moments back then, from 2010-2012, but it was time to move on and hope for better days, instead of getting better I was continuing to decline, even despite being gluten free due to a new Celiac diagnosis as well. The celiac journey will be another post we well.
I found another Rheumatology group that had some good reviews and waited a few months for my appointment. My first appointment with her went well so I thought I had found THE dr who would help me find a better treatment plan. She was an older physician and I thought that meant she would have a lot more expertise and a lot more compassion, boy was I wrong! This Dr ended up being one of the worst Drs I've had in my entire life, and I've had A LOT. I wish I could go back and accurately describe all of the ridiculous things that happened while I was her patient, I'll do my best. So let's go back to 2012. I have a very high strung adhd aspergers 5/6 year old, and a very clingy over emotional 3/4 year old who still has serious separation anxiety. Physically, I can't drive that much and when I do go out I have to spend most of my time sitting down.I had gone from volunteering every single sunday, to barely being able to be walk, not able to volunteer anymore. My muscle weakness had progressed to serious lengths. It had been a progressive thing, but all of a sudden a sharp decline. It was august 2012, I was in home depot with my husband and all of a sudden both my legs just gave out. As though my legs were going on strike, I was no longer able to put any weight on them, they became worse than jello. I could almost hear them screaming NOOOO at me. I was laid out in the middle of the one of the toilets, in home depot trying to figure out what the heck was going on. Jason got me water and scooted me to the side of the aisle as to try to not attract much attention. If you know me, I'm not one to draw attention on myself. Its very embarrassing. I remember sitting there and we just stared at each other thinking, "what now".....
Jason ended up carrying me out of home depot as I cried all the way home trying to wrap my head around what in the world was happening. I had already been hospitalized a few times with infections this year and dehydration but this was something new. I was admitted to the hospital with the thoughts that I had a brain tumor or guillain barre disease, or myelitis. They did spinal MRIs which were not very significant for much other than arthritis, which at 26 I shouldn't have but nonetheless, still couldn't explain my symptoms. I was discharged after a week of fluids and different tests to see a neurologist. I was set up quickly with the neurologist, within a few days of getting out of the hospital. She ordered some other tests and determined I had neuropathy. But we still didn't know why. I had started having searing pain that I couldn't explain in words. I was in agonizing pain, and between the weakness and pain I couldn't stand or walk to get my kids food. I have no family to help and for the first time in my health battle journey I am feeling completely helpless and hopeless. I cried out to God in those moments just begging for some answers. What the heck is going on? Im at a time where we had all gotten diagnosed with celiac and at this time there was not much gluten free options in the store. Everything had to be made from scratch. My husband is gone 24hr plus hours on top of being in school full time and doing shifts at the hospital for clinicals. My best friend of almost 10 years moved out of the state at the same time. Then I learned my other best friend was moving out of the state in a few months. So I am literally alone, and I felt it too. I really dug deeper into my relationship with God in a new way. It wasnt always good and fun conversations. There were a lot of bad words (yes shocking I know) and a lot of tears. I became angry. I had volunteered in multiple areas of church, the newest being on marriage builders leadership team. I've always been faithful God, why are you doing this, I thought? Those were some of the hardest days. One of the tests they did, which I didn't know about at the time, was an echocardiogram on my heart. I had not really had heart issues after my pregnancies were over. I did have problems when I was pregnant, but afterward I was given the ok, with a checkup once a year, or "if something changed". What I wasn't told was that I had started having changes...
My ejection fraction, the amount my heart could perfuse had gone down. It wasn't for over 7 months later that I was admitted with severe ulcers all through my mouth, throat, and intestines that it was discovered I was actually in heart failure. It was a few months after two major surgeries, gallbladder, urological surgery, a miscarriage and hospitalizations, I found myself yet again contemplating going to the ER. I decided to go to my cardiologist first. I called my husband and told him I needed to go to the heart dr asap, as I knew something was wrong. I couldn't breathe right, I was so lethargic, tired doesn't come close to explaining. We waited in the waiting room until they could fit me in for an echocardiogram and appointment with the nurse practitioner. Usually after an echo, all my other ones at least, they would say, "Ok, the dr will read this later and if he sees anything we will get back to you'". I really wasnt anxious, I just could barely stay awake, even trying to sit up in my wheelchair was extensively hard. After the echo, the tech guided me to an office room, and told us to wait in there, that the dr would be in a minute. Jason and I both looked at each other, and his eyes welled up with tears because we both knew what that meant, something was not right. It seemed like an eternity until they came in, both the Dr and the nurse practitioner. Geez, I thought to myself, this is overkill. The Dr explained that my heart was failing and I needed to be admitted to the hospital for fluids and medications, and some other heart tests. He couldn't explain why my heart was failing, and was hoping by being admitted maybe I would find some answers there. He wrote all this on a script and sent us to the ER right next door. I was taken back and admitted to the hospital for a little over a week. This particular room was the smallest room I had ever been in before then, or since then. It was relatively closet size, with a toilet. In fact, it was June, very hot, and the air conditioning was broken in the building. The showers also were not usable, they were being used for storage purposes. I've had A LOT of hospitalizations but this one still is very fresh in my mind because it was sooooooo hot. One of the nurses, had mercy on me a few days in and found me a fan. I ended up getting a kidney infection while I was there also. I got to have a "show" from my neighbor across the hall running down the hall naked trying to "escape" from the hospital. The other neighbor was a very large man, who seemed to be about the same boat as me. I gave him the fan when I was able to escape the dark clutches of darkness, very similar to what I imagine hell to be like. Another week long stay and a lot of poking prodding, infiltrated IVs and blown veins I still had no answers as to WHY. It seemed like there was never any clear answers to anything for me. I got out of that hospitalization after I was able to swallow my spit and fluids on very high dose prednisone. This had not been my first rodeo with prednisone, nope I've had quite a few tapers and IV solumedrol every few hours for severe flare ups. This time, I had so many ulcers they couldn't figure out the doses so they just kept increasing them. So I was sent back and forth to cardiology, and I needed to go to the heart failure clinic at Norfolk General hospital. They talked about doing a heart biopsy from one Dr, another Dr said he thought those tests had to be wrong because I should be "really swollen". Everyone was confused. I didn't have a lot of the typical symptoms. I didn't fit into their box and somehow that was looked at like it was my fault. I have never been a textbook patient. I tend to prove most physicians wrong in their initial assessments. Some Drs LOVE learning no matter how long they have been a Dr, while some absolutely hate being wrong, so we don't tend to get a long very well, because my results are not textbook, and it should be xyz and its not.
At the heart failure clinic I found several kinds of Drs as I mentioned above. The best physician there, in my opinion, is Dr. Leitz. She thinks outside the box and got me off the drugs the other drs were trying to throw at me, onto high dose prednisone, and into recovery. In the process she told me I would be on the heart transplant list but if they accepted me I would be on the bottom of the list because of my co-morbidity list I was not a good candidate for transplant because I'm more of a risk. Im more likely to die from rejection, infection, or complication. While It sunk in everything she told me, I couldn't hold back the tears, thinking at 26/27 years old I was in heart failure and possibly leaving my babies with nothing. Its taken me weeks to write this because I had to look a lot up, due to my memory, but also because I remember all the things I don't wish to remember and I have serious PTSD from this time of my life as well. My last echo in May 2017 was ok, It showed I was not in heart failure. The still want to do the biopsy of my heart but they know Id have complications and so I've been able to hold it off. The last hospitalization with that last Rheumatologist was one of the most humiliating experiences in my life. After I was discharged I sat in her office waiting to find answers as to what was going on. She literally laughed in my face. I could barely still swallow and barely sit up, here I was at my Dr's office, asking her for help. She called my neuro and left her office door open, I could hear her laughing and telling him how pathetic I was sitting in there in my wheelchair. I started crying my eyes out. I had been embarrassed and rejected a lot but I was straight appalled at this. We left the office requesting the office manager. I told her everything and sadly, she was not surprised. She apologized and said she had a wonderful Dr to set me up with at another practice. This Dr would prove be someone who would help me get some of my life back and is still one of the best physicians I have today. In life I've learned when some things seem to fail or look absolutely bleak God is always strategically placing a plan in place behind the scenes. If I had not gotten sent to him and rejected by this Dr I would never have been diagnosed with some other diagnoses that altered the course of my life in such a way. I would not be here today. So I'm thankful for God's redirection and rejection. If you are going through this, hold on, there's something good that can come out of it, keep fighting!
Update March 2018- My heart is in heart failure again, praying to find breakthrough treatment
I found another Rheumatology group that had some good reviews and waited a few months for my appointment. My first appointment with her went well so I thought I had found THE dr who would help me find a better treatment plan. She was an older physician and I thought that meant she would have a lot more expertise and a lot more compassion, boy was I wrong! This Dr ended up being one of the worst Drs I've had in my entire life, and I've had A LOT. I wish I could go back and accurately describe all of the ridiculous things that happened while I was her patient, I'll do my best. So let's go back to 2012. I have a very high strung adhd aspergers 5/6 year old, and a very clingy over emotional 3/4 year old who still has serious separation anxiety. Physically, I can't drive that much and when I do go out I have to spend most of my time sitting down.I had gone from volunteering every single sunday, to barely being able to be walk, not able to volunteer anymore. My muscle weakness had progressed to serious lengths. It had been a progressive thing, but all of a sudden a sharp decline. It was august 2012, I was in home depot with my husband and all of a sudden both my legs just gave out. As though my legs were going on strike, I was no longer able to put any weight on them, they became worse than jello. I could almost hear them screaming NOOOO at me. I was laid out in the middle of the one of the toilets, in home depot trying to figure out what the heck was going on. Jason got me water and scooted me to the side of the aisle as to try to not attract much attention. If you know me, I'm not one to draw attention on myself. Its very embarrassing. I remember sitting there and we just stared at each other thinking, "what now".....
Jason ended up carrying me out of home depot as I cried all the way home trying to wrap my head around what in the world was happening. I had already been hospitalized a few times with infections this year and dehydration but this was something new. I was admitted to the hospital with the thoughts that I had a brain tumor or guillain barre disease, or myelitis. They did spinal MRIs which were not very significant for much other than arthritis, which at 26 I shouldn't have but nonetheless, still couldn't explain my symptoms. I was discharged after a week of fluids and different tests to see a neurologist. I was set up quickly with the neurologist, within a few days of getting out of the hospital. She ordered some other tests and determined I had neuropathy. But we still didn't know why. I had started having searing pain that I couldn't explain in words. I was in agonizing pain, and between the weakness and pain I couldn't stand or walk to get my kids food. I have no family to help and for the first time in my health battle journey I am feeling completely helpless and hopeless. I cried out to God in those moments just begging for some answers. What the heck is going on? Im at a time where we had all gotten diagnosed with celiac and at this time there was not much gluten free options in the store. Everything had to be made from scratch. My husband is gone 24hr plus hours on top of being in school full time and doing shifts at the hospital for clinicals. My best friend of almost 10 years moved out of the state at the same time. Then I learned my other best friend was moving out of the state in a few months. So I am literally alone, and I felt it too. I really dug deeper into my relationship with God in a new way. It wasnt always good and fun conversations. There were a lot of bad words (yes shocking I know) and a lot of tears. I became angry. I had volunteered in multiple areas of church, the newest being on marriage builders leadership team. I've always been faithful God, why are you doing this, I thought? Those were some of the hardest days. One of the tests they did, which I didn't know about at the time, was an echocardiogram on my heart. I had not really had heart issues after my pregnancies were over. I did have problems when I was pregnant, but afterward I was given the ok, with a checkup once a year, or "if something changed". What I wasn't told was that I had started having changes...
My ejection fraction, the amount my heart could perfuse had gone down. It wasn't for over 7 months later that I was admitted with severe ulcers all through my mouth, throat, and intestines that it was discovered I was actually in heart failure. It was a few months after two major surgeries, gallbladder, urological surgery, a miscarriage and hospitalizations, I found myself yet again contemplating going to the ER. I decided to go to my cardiologist first. I called my husband and told him I needed to go to the heart dr asap, as I knew something was wrong. I couldn't breathe right, I was so lethargic, tired doesn't come close to explaining. We waited in the waiting room until they could fit me in for an echocardiogram and appointment with the nurse practitioner. Usually after an echo, all my other ones at least, they would say, "Ok, the dr will read this later and if he sees anything we will get back to you'". I really wasnt anxious, I just could barely stay awake, even trying to sit up in my wheelchair was extensively hard. After the echo, the tech guided me to an office room, and told us to wait in there, that the dr would be in a minute. Jason and I both looked at each other, and his eyes welled up with tears because we both knew what that meant, something was not right. It seemed like an eternity until they came in, both the Dr and the nurse practitioner. Geez, I thought to myself, this is overkill. The Dr explained that my heart was failing and I needed to be admitted to the hospital for fluids and medications, and some other heart tests. He couldn't explain why my heart was failing, and was hoping by being admitted maybe I would find some answers there. He wrote all this on a script and sent us to the ER right next door. I was taken back and admitted to the hospital for a little over a week. This particular room was the smallest room I had ever been in before then, or since then. It was relatively closet size, with a toilet. In fact, it was June, very hot, and the air conditioning was broken in the building. The showers also were not usable, they were being used for storage purposes. I've had A LOT of hospitalizations but this one still is very fresh in my mind because it was sooooooo hot. One of the nurses, had mercy on me a few days in and found me a fan. I ended up getting a kidney infection while I was there also. I got to have a "show" from my neighbor across the hall running down the hall naked trying to "escape" from the hospital. The other neighbor was a very large man, who seemed to be about the same boat as me. I gave him the fan when I was able to escape the dark clutches of darkness, very similar to what I imagine hell to be like. Another week long stay and a lot of poking prodding, infiltrated IVs and blown veins I still had no answers as to WHY. It seemed like there was never any clear answers to anything for me. I got out of that hospitalization after I was able to swallow my spit and fluids on very high dose prednisone. This had not been my first rodeo with prednisone, nope I've had quite a few tapers and IV solumedrol every few hours for severe flare ups. This time, I had so many ulcers they couldn't figure out the doses so they just kept increasing them. So I was sent back and forth to cardiology, and I needed to go to the heart failure clinic at Norfolk General hospital. They talked about doing a heart biopsy from one Dr, another Dr said he thought those tests had to be wrong because I should be "really swollen". Everyone was confused. I didn't have a lot of the typical symptoms. I didn't fit into their box and somehow that was looked at like it was my fault. I have never been a textbook patient. I tend to prove most physicians wrong in their initial assessments. Some Drs LOVE learning no matter how long they have been a Dr, while some absolutely hate being wrong, so we don't tend to get a long very well, because my results are not textbook, and it should be xyz and its not.
At the heart failure clinic I found several kinds of Drs as I mentioned above. The best physician there, in my opinion, is Dr. Leitz. She thinks outside the box and got me off the drugs the other drs were trying to throw at me, onto high dose prednisone, and into recovery. In the process she told me I would be on the heart transplant list but if they accepted me I would be on the bottom of the list because of my co-morbidity list I was not a good candidate for transplant because I'm more of a risk. Im more likely to die from rejection, infection, or complication. While It sunk in everything she told me, I couldn't hold back the tears, thinking at 26/27 years old I was in heart failure and possibly leaving my babies with nothing. Its taken me weeks to write this because I had to look a lot up, due to my memory, but also because I remember all the things I don't wish to remember and I have serious PTSD from this time of my life as well. My last echo in May 2017 was ok, It showed I was not in heart failure. The still want to do the biopsy of my heart but they know Id have complications and so I've been able to hold it off. The last hospitalization with that last Rheumatologist was one of the most humiliating experiences in my life. After I was discharged I sat in her office waiting to find answers as to what was going on. She literally laughed in my face. I could barely still swallow and barely sit up, here I was at my Dr's office, asking her for help. She called my neuro and left her office door open, I could hear her laughing and telling him how pathetic I was sitting in there in my wheelchair. I started crying my eyes out. I had been embarrassed and rejected a lot but I was straight appalled at this. We left the office requesting the office manager. I told her everything and sadly, she was not surprised. She apologized and said she had a wonderful Dr to set me up with at another practice. This Dr would prove be someone who would help me get some of my life back and is still one of the best physicians I have today. In life I've learned when some things seem to fail or look absolutely bleak God is always strategically placing a plan in place behind the scenes. If I had not gotten sent to him and rejected by this Dr I would never have been diagnosed with some other diagnoses that altered the course of my life in such a way. I would not be here today. So I'm thankful for God's redirection and rejection. If you are going through this, hold on, there's something good that can come out of it, keep fighting!
Update March 2018- My heart is in heart failure again, praying to find breakthrough treatment
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