Quick Recap - At a healthy 21, "flu" became "bronchitis" became "pneumonia" for which I was hospitalized. Later, a pulmonlogist (Dr. Weber) would make the lifesaving/lifechanging discovery that I had blood clots in my lungs. He would then discover I had a kidney disease. A kidney biopsy would reveal that I had Mesangial Proliferative Glumerulonephritis (a rare autoimmune kidney disease). High doses of prednisone would instantly put it into remission. The doctor was stunned. "It's gone" is all he could say. I was healthy until it returned the next March. Again prednisone would instantly put the disease into remission. Once again, the doctor was stunned. I'm 23 at this point and have been married two and a half years. We moved to Fort Worth after graduating from A&M for my husband to go to seminary while I teach 4th grade.
Pay close attention because this may look familiar...
Besides being on A LOT of meds and suffering through the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there...but what nephrologist would I see and how would they treat it now?
So there I was in an entirely different area with entirely different insurance. I didn't know any of the doctors in the area. We talked about calling my old nephrologist but were sure the insurance wouldn't cover it. I had always had an HMO so I thought I would need to follow procedures and find a family doctor who would then refer me to a specialist. After all, that's the way it works, right? Apparently that's NOT how it works in a PPO.
Like a good, rule following client, I called my insurance company to see what I needed to do and how I could quickly move up the red tape to a specialist. "Just go on our website and pick one of our participating doctors." That was it...really? How on earth was I supposed to choose? So I went on and scrolled through a lot of meaningless names and a lot of different hospitals. When you live in a large metro area, you hear good and bad about every hospital in the area. Everyone has their opinion and everyone's opinion was different. I was familiar with this one hospital off of I-35. It looked "new" and they were adding to it/updating it. I also knew I could get to it pretty easily. There was a nephrologist listed there.
It's a name I will NEVER forget- Dr. Yegge. I read his bio. He was young but looked well experienced and progressive. I called and made the appointment. He would be my new nephrologist...and my new lifesaver!
I remember when he walked into the exam room. He WAS young (especially compared to my other nephrologists) and hip like Michael J. Fox in Doc Hollywood. (This is actually how Danny and I referred to him for the longest time.) He had a little bit of an arrogant stride as he walked in, introduced himself and said, "So, tell me what brought you in here today."
I just matter of factly said, "I have Mesangial Proliferative Glumerulonephritis. In the past 2 years, it has been active twice and quickly goes into remission with the use of prednisone. It's active again. I need you to treat me."
He gave me that "look" doctors give patients when they don't necessarily believe what they are saying and asked, "And how are you so sure you're sick again?" There was this smirk that many would have found intimidating or annoying. I found it endearing. He was going to be a challenge. I love a challenge!
"Frothy urine. Oh and I have albumistixs that test for protein in the urine at home. The tests are off the chart positive again."
He just kind of rocked back on his heels and gave the well okay face and said, "How about we run an actual test here and just see! Also, fill out the paperwork for us to get your records from your previous doctors/hospitals. Alrighty?" I filled out the paperwork and provided him with an "actual" sample for him to perform an "actual" test on.
He walked in within minutes. "You are right. It's back and it's off the charts. Lets review your medical history and see if we can get them to fax your records over right now." We started going through the whole tale of how they found it, who found it, what they gave me and so on. In the portion of the story where the pulmonologist (Dr. Weber) saved my life and banned the other doctors, he stopped and interrupted me. "Do you happen to remember the name of the pulmonologist in Bryan at St. Joseph's?"
Remember, how could I forget..."Dr. Weber, why?"
He chuckled. "Dr. Thomas Weber?"
"Absolutely! Do you know him?" I inquired.
"He trained me. I studied under him. I can't believe he's still around Bryan."
That was my God affirming sign. Just as God would have it out of ALL the nephrologist in ALL of DFW that I had to choose from, I would chose the one that the pulmonologist, my LIFESAVER, had trained. Seriously, what's the probability of that. Nope, this was a JUST AS GOD WOULD HAVE IT MOMENT that sealed it for me. We went through the rest of the history. He was surprised that I had the diagnosis I had considering the numbers I demonstrated. "Please tell me you don't want to do another biopsy?" They had warned me that if it came back again another biopsy might be the 1st step because my disease can "mutate" into other diseases.
He didn't. He was a straight shooter. I liked that. "Let me be honest with you. I have never treated this specific disease. No one in my practice has...your last nephrologist probably hadn't treated it before either, NOT with numbers like these. I can tell you that if it keeps coming back and we keep putting you on high doses of prednisone for 6 months out of every year, your other organs will begin to fail. You will not make it to 30."
I didn't sink down...I leaned in. "But I respond so well to prednisone. Do you have another idea?"
He did! There was another patient of his with a similar disease. Her numbers were no where near as high as mine, but she had been on this treatment and had been in remission for 4 years and her only side effect is that she bruises a little more easily than most. He warned me that we would probably never be able to completely eliminate the protein but bring it down to an acceptable, therapeutic level.
Just the thought of 4 healthy years seemed unobtainable. I wanted to know more about the side effects. He pulled it up on his PDA. Of course now in the age of the iphone, that's absolutely no big deal...but in 2001 when all my other doctors got the dusty book off the shelf to look up side effects, it was mind boggling. He WAS Doc Hollywood! We reviewed it together...no short or long-term side effects other then increased bruising. Oh, and the other catch - they don't know how or why it works, just that it does. And good news, if it doesn't work, we knew I would respond to prednisone so that could be our parachute.
Could this really be it? I started the meds immediately. Dipyridamole and aspirin twice daily...and a low protein/low cholesterol diet. That was it. No side effects.
2 weeks passed and I returned for my progress check. "The protein's not gone but you have dropped well into the normal, non-diseased person range." He couldn't be more surprised or thrilled. I, although not surprised, could not stop smiling. I returned in two more weeks and heard the word I had heard so many times before, "Gone." There wasn't even a trace of protein. He didn't get it. I did! God had led me to him for this very purpose. He told me that I would probably be on this medicine for life and he would need to see me every 3 months for a year and then every 6 months after that. With no side effects and a bedside manner I enjoyed, I was more than okay with that!
Now pay VERY close attention because this may look familiar but it's NOT...
Besides taking my meds with no side effects, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came - healthy. Then APRIL ended - still healthy.
My check-up with him was in early May. Check-ups made me nervous. They still do. There is always the chance that my blood or urine will reveal something to the doctor that I haven't sensed.
He walked in and smiled. All was well...I sighed. I think it was the first time he had seen real, raw emotion out of me. He wanted to know why I was worried.
A little embarrassed, I explained, "This is going to sound ridiculous and completely out of character for me, but I have ALWAYS become sick in March and April. WHEN APRIL ENDS, I can breathe a sigh of relief because I know I won't get sick that year." He nodded. It wasn't ridiculous at all. Because my disease is autoimmune and a combination of unlucky genetics and undetermined environmental factors, it may very well be an seasonal "allergic" type immune response. He hugged me and said, "When April ends indeed..."
Much has happened since then. He and I both moved. I haven't seen him since that last hug. I have remained (sometimes at my insistence) on Aspirin and Dipyridamole. I have celebrated my 30th birthday, and 31st and 32nd and 33rd. I HAVE BEEN IN REMISSION FROM MY KIDNEY DISEASE FOR 10 YEARS!
Other stuff has happened too.
That will be my next post but first let me say this:
My kidney disease has been one of the biggest blessings in my life. People find that to be a bizarre statement but I cling to that. God has used it to open doors and hearts to reach people that would be unreachable if I hadn't journeyed down this road. More importantly, God has used it to completely change and shape and refocus me. Here are some ways that this journey has helped me along in the process of becoming not me:
My life is not my own. He bought me with the precious blood of Jesus and He sustains me. It's cliche, but for me SO true. Every day is an unexpected, unmerited gift from God. My kidneys work solely because God wills them to work. Although this is true for everyone, healthy people do not LIVE within that reality, people like me do. If God bought me and sustains me, than HE must direct the path of my life not me. And that has been a change...my natural tendency in EVERY fiber of my being is to plan and control each detail of every aspect of my life. This disease has forced me to face the reality that I cant...I shouldn't...and the journey has led me to I won't. Time after time after time I have planned and schemed only to have God lay HIS plans in front of me. And every time, it is a reminder that my life is not my own but is for His glory and His plan. In view of God's mercy, how could I say no?
I celebrate life, I do not cling to it. I remember turning 30. For most people, it's depressing. For me, it was GLORIOUS! God had let me reach the day many doctors said would never come...and I reached it healthy! I would not have fathomed that at 21, but here it was. Not only that, God also gave me a son. On my 30th birthday, my son was 19 days old! Every birthday after that has been equally triumphant. I immediately start saying I'm the next year because getting older is something I never thought I would experience! Life is to be celebrated but not in and of itself. Although it is fragile, it is not the end. We have walked that road with some friends and students. There is SO much more to the story than this life. Phil 1:21 says For me, to live is Christ (and that should be celebrated) but to die is gain (and that should be celebrated too). (emphasis mine) I will put this here in print. When I die, whenever that may be, I don't want anyone to wear black to my funeral. I don't want anyone looking at my dead body (I'm not there anymore). I don't want funeral food for my family and friends. (Carnival type food would be more appropriate) I don't want depressing music...I want exuberant worship. I don't want sad tales...I want ridiculous stories. I want the beauty of the gospel to be presented and people to get saved. I want rejoicing! Death is not to be feared but embraced. I wouldn't have known that if I hadn't had to come to terms with the real prospect of facing it through this disease.
I am tender to those who suffer alone. I wasn't before. That is a HUGE change for me. I didn't know what it was like to long for health answers when none were there. I didn't know what it was like to hear the words incurable. I didn't know what it was like for the medicines that heal you to ravage your body. I didn't know what it was like to be pitied instead of valued. I do now. I understand the uncertainty, frustration, guilt, burden, and mental brokenness of those with serious, but specifically chronic illnesses. Those with lifetime chronic illnesses suffer alone with their families and often in silence and isolation. Why? Because everyone rallies for the sprint but no one stays for the marathon...and the sufferer gets tired of asking. It is self defeating, demeaning, devaluing. God has changed me in this journey from a person that sprinted to the "rescue" into a person that would run the marathon alongside.
So, when april ends I celebrate the hope of another healthy year.
Friends, April has ended! What are you celebrating?
Friday, May 6, 2011
Thursday, May 5, 2011
when april ends...part 4
Sorry I didn't get to it last night...life (and the desire for sleep) just got in the way!
Quick Recap - I'm 21, been married now for 9 months. "Flu" turned "bronchitis" turned "pneumonia" and finally led to the lifesaving find of blood clots in my lungs (pulmonary embolism for my science friends). In searching for "why", they found that I was leaking protein in my urine (aka - kidney disease) and had ridiculous cholesterol (495). I was hospitalized for the blood clots and testing and eventually sent home. At home, I was little more than an invalid. God had broken my pride and self reliance. He had answered that He would NOT heal me. He had given me a peace about the prospect of life, suffering or death. Now it was time for the biopsy.
So the biopsy was scheduled for June 1st. I would have to go to S&W in Temple because they didn't have a nephrologist in Bryan and would no longer pay for me to see the non-HMO nephrologists who had managed my case so far. Since it was in Temple instead of College Station, Danny wouldn't be there the day of the biopsy because he had summer school. Luckily, my parents live in Temple so they would be there.
I remember the day of the biopsy well. I had to get off my blood thinners, a fact which worried me (and I think the doctors) a great deal. My parents went with me to the appointment. I must have looked ridiculously young because the nurse asked if I wanted my mom to come back and wait with me. I told her that I would be fine. She looked at me and said, "But you're so young. Don't you want your mom?" I told her I was 21...she thought I was 13 (not something a 21 year old wants to hear!)
They did an ultrasound to get a good idea of the exact location of my kidneys...and good thing they did because mine are apparently VERY shallow. They gave me a local and then a "deeper" local. It was time. "Breathe in and hold it," the doctor ordered. I did...and then heard the WORST sound I have ever heard in my life. It's a sound I will NEVER forget. You know the sound of the old ear piercing guns? KA-CHUNK! That's the sound this biopsy device makes except they are extracting cells from your kidneys. "Now breathe...and again - Hold it" KA-CHUNK! "Now breathe...and again - Hold it" KA-CHUNK! I honestly don't know how many KA-CHUNKS there were. I don't remember it being painful right then (it WAS later) but I just remember the pain of the sound...and then it was over.
I would spend at least 24 hours in the hospital laying COMPLETELY flat on my back. They had 2 fears that had to be monitored - I would bleed out or I would clot too quickly. They took me to my room and gave me some pain meds. They would check my urine for blood for the next 24 hours...quite a feat considering I had to use a bed pan and I am not allowed to sit up whatsoever. I hadn't been in my room long when Danny showed up. I was so glad just to hold his hand. He looked worn out and beaten down...and I could do nothing about it.
I didn't bleed out or form a hematoma so the next day I was released. The doctor asked me if I wanted pain meds. I assured him I would be fine...after all, I had 2 knee surgeries under my belt and countless soccer injuries. WHAT A MISTAKE! By far, the kidney biopsy was the most painful experience of my life! With that (and no pain meds), Danny and I headed home to College Station. I felt EVERY bump in that road in the HOLES in my kidney. It didn't matter how fast or how slow he drove. I could not have been more miserable...needless to say, we called when we got home and asked for that pain prescription.
A week later, I returned for my biopsy results. "I didn't believe it when they sent the report so I went down to the pathology lab myself..."was how my doctor started out the conversation. I had Mesangial Proliferative Glumerulonephritis, something that usually occurs in children or the elderly and rarely/NEVER leaks the amount of protein they were seeing. It's an autoimmune disease, meaning my autoimmune system for some reason had chosen to attack my kidneys. (This becomes a key to LOTS of things later). I didn't even care the whats or the weirdness. Finally I had a name to it all. Answers were answers regardless. And because I'm an unemotional, rational, bottomliner, my response was "So, what do we do?" I got my pen and notebook ready.
I wasn't expecting what he said next, "There are things we can try, but they probably won't work because...bottom line, it's incurable. You will always have this. There's a good chance it will take your life, sooner rather than later." I didn't cry. I don't think I even flinched. God had prepared me for this long before this visit...long before I knew it wouldn't just "go away on it's own."
I wanted my options. He gave them. 1st we could try the highest dose of prednisone they could give my body. He didn't hold out much hope for this, but it was less severe then the next option. Pill chemo then IV chemo. Bottom line, they had to suppress my immunes system as much as possible.
"Let's do the prednisone then. Start me today." I was determined. I also had to go on a low protein, low sodium, low cholesterol diet...and prednisone would probably make me gain massive amounts of weight because it would create the feeling of always being hungry. I didn't care and I would severely monitor my eating...so he made the orders.
Danny and I left the office. I think the only thing we really discussed was our surprise over the word incurable...I didn't know doctors used that term anymore. Even cancer patients were declared cured after a certain number of years...I never would be! I would always be sick even when I was healthy...
We went to my parents house to tell them. I remember most distinctly sitting across from my mom in my childhood bedroom. She kept repeating through tears, "God's going to heal you, I just know it. He HAS to heal you."
And here came the hard part, "Mom, God doesn't have to heal me and He may choose not to heal me. I need you to know that I'm okay with that...and I need you to be okay with that too. I need to know that if God allows me to suffer with this or takes my life as a result, that you will still praise Him and know that it was for His glory...and that's what I want more than anything." She nodded and embraced me. I don't think she was or is or ever will be okay with that...maybe that's what being a mother is all about. She lamented (and still does) that I (and my brother) have these health issues instead of her. She would gladly bare them all for us...but ironically we would do the same for her!
We went and told Danny's family the same information and then headed back to our apartment in College Station. That was a long, dark, quiet drive. About halfway there, I finally broke the silence with this, "You didn't sign up for this when you married me. If you want to divorce me, I understand. I wouldn't be angry or hurt and I don't think anyone else would either. I can move back home with my parents and you can move on with your life. You didn't sign up for this!"
He stopped the car. "Don't ever say that again. I married you no matter what. Don't ever say that again." He started driving again...and I sat and cried silently. Danny didn't "process" my illness and all that stirred within him for many, many years...but his faithful resolve to stand by me did not waiver.
I started prednisone. I honestly couldn't tell you now how many different medications I was on at the time and how many different times I had to take the different meds. Some with food. Others without food. Some with a full glass of water. I think one with milk (?). I had one of those GIANT pill containers that has it broken down by the hour. I was also still quite useless, but gaining strength every day. I obsessed over my diet and insanely monitored my intake. The doctor didn't lie about prednisone making you ravenously hungry...I just denied myself. My stomach would ACHE in pain so I developed some club soda "remedy" that provided some relief. Prednisone also caused me to be ridiculously resltess, so much so that I wore a path around our living room carpet walking it during the night. I would also just lay in my bed, stare at the ceiling and pray...not for me, but for everyone and anyone I knew. Because I couldn't sleep at night, when I did fall asleep I just literally crashed, usually on the couch in the afternoon. I was living on 3 or 4 hours of sleep a day.
My 2 week check-up with the nephrologist came. Danny and I waited anxiously in the doctor's office. He walked in and said words I never expected, "I can't explain this, but it's gone. You have absolutely no protein in your urine." He went on to say that he didn't expect any change at all so this was mind boggling and inexplicable. He just kept repeating the words GONE and DISAPPEARED. We were in disbelief. I would continue the full dose of prednisone for 2 more weeks then he would back me off slowly and continue to monitor me.
I knew that this was something only God could have done. I made that clear to the doctor and anyone else I could share it with. I was elated and confused. Had I misunderstood when I clearly sensed God saying that He would not heal me? Had all of this been some sort of bizarre test? Was it over? How would/could He use this?
Besides being on A LOT of meds and suffering through all the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there. I remember calling Danny into the bathroom to look at my urine.
"That looks frothy, doesn't it?" I asked him. (I know, weird question to ask but frothy=protein in urine. And I know, it's weird to ask your husband of a year and a half but we were so far past that.) He didn't even have to answer...I KNEW his answer when he slumped his shoulders and sunk his chin to his chest. He just pulled me close and hugged me. "I'll call Dr. Duke and get an appointment."
And so I did. I was right. It was back. Clearly I had not misunderstood God. The doctor was shocked, almost speechless. "Same approach because you responded so well last time." I agreed and we started prednisone all over again. This time, however, I was student teaching so I didn't have the luxury of crashing after a sleepless night. I just pushed forward. God gave me the strength. Danny gave me the will.
2 week check-up. "Gone again...I just really don't know." We followed the exact same treatment plan as last time. It would take me 6 months to back off the prednisone.
That May, Danny and I both graduated. We moved to Fort Worth so he could go to seminary and I got a job teaching 4th grade. Initially, we discussed keeping my nephrologist but decided it was too much of a drive and unnecessary expense. This decision turned out to be MONUMENTAL and the only thing I can attribute it to is God's direct leading, intervention and direction.
Pay close attention because this may look familiar...
Besides being on A LOT of meds and suffering through the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there...
but what nephrologist would I see and how would they treat it now...that's part 5 (coming tomorrow I hope)
Quick Recap - I'm 21, been married now for 9 months. "Flu" turned "bronchitis" turned "pneumonia" and finally led to the lifesaving find of blood clots in my lungs (pulmonary embolism for my science friends). In searching for "why", they found that I was leaking protein in my urine (aka - kidney disease) and had ridiculous cholesterol (495). I was hospitalized for the blood clots and testing and eventually sent home. At home, I was little more than an invalid. God had broken my pride and self reliance. He had answered that He would NOT heal me. He had given me a peace about the prospect of life, suffering or death. Now it was time for the biopsy.
So the biopsy was scheduled for June 1st. I would have to go to S&W in Temple because they didn't have a nephrologist in Bryan and would no longer pay for me to see the non-HMO nephrologists who had managed my case so far. Since it was in Temple instead of College Station, Danny wouldn't be there the day of the biopsy because he had summer school. Luckily, my parents live in Temple so they would be there.
I remember the day of the biopsy well. I had to get off my blood thinners, a fact which worried me (and I think the doctors) a great deal. My parents went with me to the appointment. I must have looked ridiculously young because the nurse asked if I wanted my mom to come back and wait with me. I told her that I would be fine. She looked at me and said, "But you're so young. Don't you want your mom?" I told her I was 21...she thought I was 13 (not something a 21 year old wants to hear!)
They did an ultrasound to get a good idea of the exact location of my kidneys...and good thing they did because mine are apparently VERY shallow. They gave me a local and then a "deeper" local. It was time. "Breathe in and hold it," the doctor ordered. I did...and then heard the WORST sound I have ever heard in my life. It's a sound I will NEVER forget. You know the sound of the old ear piercing guns? KA-CHUNK! That's the sound this biopsy device makes except they are extracting cells from your kidneys. "Now breathe...and again - Hold it" KA-CHUNK! "Now breathe...and again - Hold it" KA-CHUNK! I honestly don't know how many KA-CHUNKS there were. I don't remember it being painful right then (it WAS later) but I just remember the pain of the sound...and then it was over.
I would spend at least 24 hours in the hospital laying COMPLETELY flat on my back. They had 2 fears that had to be monitored - I would bleed out or I would clot too quickly. They took me to my room and gave me some pain meds. They would check my urine for blood for the next 24 hours...quite a feat considering I had to use a bed pan and I am not allowed to sit up whatsoever. I hadn't been in my room long when Danny showed up. I was so glad just to hold his hand. He looked worn out and beaten down...and I could do nothing about it.
I didn't bleed out or form a hematoma so the next day I was released. The doctor asked me if I wanted pain meds. I assured him I would be fine...after all, I had 2 knee surgeries under my belt and countless soccer injuries. WHAT A MISTAKE! By far, the kidney biopsy was the most painful experience of my life! With that (and no pain meds), Danny and I headed home to College Station. I felt EVERY bump in that road in the HOLES in my kidney. It didn't matter how fast or how slow he drove. I could not have been more miserable...needless to say, we called when we got home and asked for that pain prescription.
A week later, I returned for my biopsy results. "I didn't believe it when they sent the report so I went down to the pathology lab myself..."was how my doctor started out the conversation. I had Mesangial Proliferative Glumerulonephritis, something that usually occurs in children or the elderly and rarely/NEVER leaks the amount of protein they were seeing. It's an autoimmune disease, meaning my autoimmune system for some reason had chosen to attack my kidneys. (This becomes a key to LOTS of things later). I didn't even care the whats or the weirdness. Finally I had a name to it all. Answers were answers regardless. And because I'm an unemotional, rational, bottomliner, my response was "So, what do we do?" I got my pen and notebook ready.
I wasn't expecting what he said next, "There are things we can try, but they probably won't work because...bottom line, it's incurable. You will always have this. There's a good chance it will take your life, sooner rather than later." I didn't cry. I don't think I even flinched. God had prepared me for this long before this visit...long before I knew it wouldn't just "go away on it's own."
I wanted my options. He gave them. 1st we could try the highest dose of prednisone they could give my body. He didn't hold out much hope for this, but it was less severe then the next option. Pill chemo then IV chemo. Bottom line, they had to suppress my immunes system as much as possible.
"Let's do the prednisone then. Start me today." I was determined. I also had to go on a low protein, low sodium, low cholesterol diet...and prednisone would probably make me gain massive amounts of weight because it would create the feeling of always being hungry. I didn't care and I would severely monitor my eating...so he made the orders.
Danny and I left the office. I think the only thing we really discussed was our surprise over the word incurable...I didn't know doctors used that term anymore. Even cancer patients were declared cured after a certain number of years...I never would be! I would always be sick even when I was healthy...
We went to my parents house to tell them. I remember most distinctly sitting across from my mom in my childhood bedroom. She kept repeating through tears, "God's going to heal you, I just know it. He HAS to heal you."
And here came the hard part, "Mom, God doesn't have to heal me and He may choose not to heal me. I need you to know that I'm okay with that...and I need you to be okay with that too. I need to know that if God allows me to suffer with this or takes my life as a result, that you will still praise Him and know that it was for His glory...and that's what I want more than anything." She nodded and embraced me. I don't think she was or is or ever will be okay with that...maybe that's what being a mother is all about. She lamented (and still does) that I (and my brother) have these health issues instead of her. She would gladly bare them all for us...but ironically we would do the same for her!
We went and told Danny's family the same information and then headed back to our apartment in College Station. That was a long, dark, quiet drive. About halfway there, I finally broke the silence with this, "You didn't sign up for this when you married me. If you want to divorce me, I understand. I wouldn't be angry or hurt and I don't think anyone else would either. I can move back home with my parents and you can move on with your life. You didn't sign up for this!"
He stopped the car. "Don't ever say that again. I married you no matter what. Don't ever say that again." He started driving again...and I sat and cried silently. Danny didn't "process" my illness and all that stirred within him for many, many years...but his faithful resolve to stand by me did not waiver.
I started prednisone. I honestly couldn't tell you now how many different medications I was on at the time and how many different times I had to take the different meds. Some with food. Others without food. Some with a full glass of water. I think one with milk (?). I had one of those GIANT pill containers that has it broken down by the hour. I was also still quite useless, but gaining strength every day. I obsessed over my diet and insanely monitored my intake. The doctor didn't lie about prednisone making you ravenously hungry...I just denied myself. My stomach would ACHE in pain so I developed some club soda "remedy" that provided some relief. Prednisone also caused me to be ridiculously resltess, so much so that I wore a path around our living room carpet walking it during the night. I would also just lay in my bed, stare at the ceiling and pray...not for me, but for everyone and anyone I knew. Because I couldn't sleep at night, when I did fall asleep I just literally crashed, usually on the couch in the afternoon. I was living on 3 or 4 hours of sleep a day.
My 2 week check-up with the nephrologist came. Danny and I waited anxiously in the doctor's office. He walked in and said words I never expected, "I can't explain this, but it's gone. You have absolutely no protein in your urine." He went on to say that he didn't expect any change at all so this was mind boggling and inexplicable. He just kept repeating the words GONE and DISAPPEARED. We were in disbelief. I would continue the full dose of prednisone for 2 more weeks then he would back me off slowly and continue to monitor me.
I knew that this was something only God could have done. I made that clear to the doctor and anyone else I could share it with. I was elated and confused. Had I misunderstood when I clearly sensed God saying that He would not heal me? Had all of this been some sort of bizarre test? Was it over? How would/could He use this?
Besides being on A LOT of meds and suffering through all the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there. I remember calling Danny into the bathroom to look at my urine.
"That looks frothy, doesn't it?" I asked him. (I know, weird question to ask but frothy=protein in urine. And I know, it's weird to ask your husband of a year and a half but we were so far past that.) He didn't even have to answer...I KNEW his answer when he slumped his shoulders and sunk his chin to his chest. He just pulled me close and hugged me. "I'll call Dr. Duke and get an appointment."
And so I did. I was right. It was back. Clearly I had not misunderstood God. The doctor was shocked, almost speechless. "Same approach because you responded so well last time." I agreed and we started prednisone all over again. This time, however, I was student teaching so I didn't have the luxury of crashing after a sleepless night. I just pushed forward. God gave me the strength. Danny gave me the will.
2 week check-up. "Gone again...I just really don't know." We followed the exact same treatment plan as last time. It would take me 6 months to back off the prednisone.
That May, Danny and I both graduated. We moved to Fort Worth so he could go to seminary and I got a job teaching 4th grade. Initially, we discussed keeping my nephrologist but decided it was too much of a drive and unnecessary expense. This decision turned out to be MONUMENTAL and the only thing I can attribute it to is God's direct leading, intervention and direction.
Pay close attention because this may look familiar...
Besides being on A LOT of meds and suffering through the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there...
but what nephrologist would I see and how would they treat it now...that's part 5 (coming tomorrow I hope)
Tuesday, May 3, 2011
when april ends...part 3
Quick Recap - I'm just 21, married 7 months. Always been healthy then "flu" turns "bronchitis" turns "pneumonia" for which I was hospitalized. An AMAZING pulmonolgist was assigned my case and we developed a quick and strong friendship. Dismissed from hospital but still quite ill. Doctors keep saying nothing is wrong with me, but pulmonologist hops back on the case after I nearly crash in the ER. He runs a test that reaveals bloodclots throughout my lungs. I have just been placed in the cardiac ward and the search for why begins...
Of course, they started drawing blood like crazy...they were testing for anything and everything. I was currently on birth control which can lead to blood clots but I didn't present any of the other risk factors that would make that a likely cause.
My lower left lobe of my lung (where they thought the pneumonia was the worst) was filled with blood clots. There was also a large triangular shaped clot lodged in the upper portion of my right lung. To get to these locations, he explained, the clots traveled from my strangely swollen legs (clue #1) THROUGH my heart (clue #2 - bizarre pulse) and lodged themselves in my lungs (clue #3 - shortness of breath). He could not predict how many times this had happened over the course of my illness, spanning March and April. I could have easily had a heart attack or stroke.
I will never forget what he said next...
"You should have died. You should not be alive. Allowing you to walk, giving you percussive breathing treatments...this should have killed you. There's a reason you are still alive."
Dr. Weber went back to my chart and pulled up all the labs they had run the night before in the ER. It hit him like a ton of bricks.
It was my kidneys. I was leaking MASSIVE, off the chart, amounts of protein in my urine...and one of these specific proteins keeps your blood from clotting unnecessarily. He looked at me in disbelief. All of this could have been avoided if they had simply run a basic urine test at the onset of all my issues. In anguish he said, all of this could have been avoided if he had simply drained the fluid off my lung during my last stay because he was sure there would have been blood clots in it. I reassured him he did what he thought was right given the information he had at the time. He told me I probably never had bronchitis or pneumonia and all of those antibiotics could have exaserbated the situation. It was fine, I told him. It all has a purpose. I wouldn't know the purpose of those blood clots for many years but God allowed even that for a reason...
He quickly brought in two nephrologist. He warned me of their lack of bedside manner and how completely opposite they were but said he would trust them to treat him. He checked on me constantly for the first two days but then would be gone for his wedding. He left orders for the nurses to keep him aprised on my situation. One nurse told me that he called daily.
Dr. Morgan was the first nephrologist for me to meet. He was an older gentleman and a straight shooter. I remember when he walked into my room and introduced himself. My mom, husband and 3 friends from high school were there at the time. I figured he would dance around the issues and ask the "non-family" to leave. Clearly this was before HIPPA because he didn't even hesitate. He sat down and started right in on a checklist of things that may be wrong.
I fell asleep and awoke to the 2nd nephrologist in the pair, Dr. Brandon, scooting me over so he could sit on my bed. He was wearing boots, wranglers, a giant belt buckle and a white western shirt. The only indication that he was even a doctor was the stethescope slung around his neck. He introduced himself and then said, "I'm going to take you to see if you have two kidneys." And that was it...my transport walked in and we all rode down in the elevator together. Good news - they were both there and both had bloodflow running to and from them. They would collect and analyze my urine but their part was pretty much done for the time being except Dr. Weber had put them on as my primary doctors (since the others were banned). They would make all the orders on my charts until he returned.
More blood tests came back with surprisingly bizarre results. My cholesterol was 495, a result of the pancreas attempting to compensate for a lack of protein in my body. It was something apparently the lab techs and phlebotomist found entertaining because they were always sending someone new to take my blood. When I asked why, a tech told me that everyone in the lab wanted to see the 21 year old, 90 lb, girl with cholesterol of 495. Atleast I was a topic of interest...
Danny and my mom kept me company. One of them was almost always with me. Mom took the night shift, sleeping in on of those terrible hospital recliners, because I shared a room with another woman. Danny was there every moment he wasn't in class. I rarely buzzed the nurses...Danny and mom even took on bedpan and sponge bath duty. Looking back, I don't know how a newly married 22 year old did the things he did...but as a result of his gentle, servant's heart, our first year afforded us the close bond that many couples don't form in 20 years.
Those 5 days seemed to last an eternity. I remember the first day I was allowed to walk. I'm sure I looked like a newborn horse trying to manuver my way to the bathroom for a shower. As soon as I walked out of the bathroom, there sat Dr. Brandon on my bed. "Why are your legs so red...that's not normal. Come sit beside me and dangle your legs off the bed...yep, not normal." And with that, I bought myself a few more days stay. They would give me a month on cholesterol medicine, blood thinners, and water pills. If the results weren't better in a month, a biopsy would be necessary.
The first few days at home were trying for me. I could do literally nothing for myself and I could contribute to our "house" in no way. I was little more than an invalid. I had to sit to take a shower and became exhausted doing so. I was so exhausted that Danny would come when I finished, wrap me in a towel, carry me to our bed and dry me. He would then help me dress and brush/dry my hair. Any pride or self reliant issues were long gone. God had humbled me and broken me of those in a very real way...a lesson I have to relearn sometimes but He is faithful to teach!
I remember being home those first few nights. I prayed almost non-stop and finally I got up the guts to ask God to heal me. I don't know that I "heard" God's audible voice, but I knew the answer was no as clear as anything I had ever heard. I asked again, again no. I pleaded a third time, NO this is the road I would have you walk. I have never asked for healing again.
After a month, I returned to the nephrologist. My numbers were worse than before. I was leaking 4000+mg of protein...but my kidney function was somehow still 100% A biopsy would provide answers and a plan.
I stood in front of my church that next Sunday to inform them of what was going on, what we needed, and how they could help. I remember giving a broad overview with tears streaming down my face. Then, with complete peace, I asked them not to pray for my healing but to pray for God's will to be done in my life so that He could be glorified. If that meant healing, so be it. If that meant suffering, I would suffer. And if that meant death (a very real possibility), I would praise Him all the more. I remember being chastised for not praying for just healing, something I still can not fathom. "You just need to have more faith..." they would say to me. I would just smile and nod.
I had (and still have) faith that God could heal me if He chose BUT also knew that God had granted me the faith to live/die for His glory if he chose not to heal me for His greater purpose. I didn't need to know that purpose to rest peacefully in it. God had spared me the thought of why me...He spares me from it still...something I am thankful for each and every day.
So with my heart and mind set on glorifying God with my life/suffering/death, I was scheduled for a biopsy on June 1, 1999...(part 4 coming tomorrow hopefully)
Of course, they started drawing blood like crazy...they were testing for anything and everything. I was currently on birth control which can lead to blood clots but I didn't present any of the other risk factors that would make that a likely cause.
My lower left lobe of my lung (where they thought the pneumonia was the worst) was filled with blood clots. There was also a large triangular shaped clot lodged in the upper portion of my right lung. To get to these locations, he explained, the clots traveled from my strangely swollen legs (clue #1) THROUGH my heart (clue #2 - bizarre pulse) and lodged themselves in my lungs (clue #3 - shortness of breath). He could not predict how many times this had happened over the course of my illness, spanning March and April. I could have easily had a heart attack or stroke.
I will never forget what he said next...
"You should have died. You should not be alive. Allowing you to walk, giving you percussive breathing treatments...this should have killed you. There's a reason you are still alive."
Dr. Weber went back to my chart and pulled up all the labs they had run the night before in the ER. It hit him like a ton of bricks.
It was my kidneys. I was leaking MASSIVE, off the chart, amounts of protein in my urine...and one of these specific proteins keeps your blood from clotting unnecessarily. He looked at me in disbelief. All of this could have been avoided if they had simply run a basic urine test at the onset of all my issues. In anguish he said, all of this could have been avoided if he had simply drained the fluid off my lung during my last stay because he was sure there would have been blood clots in it. I reassured him he did what he thought was right given the information he had at the time. He told me I probably never had bronchitis or pneumonia and all of those antibiotics could have exaserbated the situation. It was fine, I told him. It all has a purpose. I wouldn't know the purpose of those blood clots for many years but God allowed even that for a reason...
He quickly brought in two nephrologist. He warned me of their lack of bedside manner and how completely opposite they were but said he would trust them to treat him. He checked on me constantly for the first two days but then would be gone for his wedding. He left orders for the nurses to keep him aprised on my situation. One nurse told me that he called daily.
Dr. Morgan was the first nephrologist for me to meet. He was an older gentleman and a straight shooter. I remember when he walked into my room and introduced himself. My mom, husband and 3 friends from high school were there at the time. I figured he would dance around the issues and ask the "non-family" to leave. Clearly this was before HIPPA because he didn't even hesitate. He sat down and started right in on a checklist of things that may be wrong.
- They needed to see if I actually had 2 kidneys and if both kidneys were getting adequate blood supply. (I didn't even know it was possible to live this long without already knowing that but...)
- They needed a 24 hour urine sample (tricky when you can't put weight on your legs even on top of a bedpan) so they could determine my overall kidney function and the exact types/amounts of proteins I was leaking.
- There was a possibility that this kidney issue was a result of all the medications and could possibly "right" itself, but he didn't put much hope in that and he didn't want me to either.
- They would not know exactly what kind of kidney disease they were dealing with until they did a biopsy, which he would recommend after giving it a month to "cleanse" itself from all the meds I had been on.
I fell asleep and awoke to the 2nd nephrologist in the pair, Dr. Brandon, scooting me over so he could sit on my bed. He was wearing boots, wranglers, a giant belt buckle and a white western shirt. The only indication that he was even a doctor was the stethescope slung around his neck. He introduced himself and then said, "I'm going to take you to see if you have two kidneys." And that was it...my transport walked in and we all rode down in the elevator together. Good news - they were both there and both had bloodflow running to and from them. They would collect and analyze my urine but their part was pretty much done for the time being except Dr. Weber had put them on as my primary doctors (since the others were banned). They would make all the orders on my charts until he returned.
More blood tests came back with surprisingly bizarre results. My cholesterol was 495, a result of the pancreas attempting to compensate for a lack of protein in my body. It was something apparently the lab techs and phlebotomist found entertaining because they were always sending someone new to take my blood. When I asked why, a tech told me that everyone in the lab wanted to see the 21 year old, 90 lb, girl with cholesterol of 495. Atleast I was a topic of interest...
Danny and my mom kept me company. One of them was almost always with me. Mom took the night shift, sleeping in on of those terrible hospital recliners, because I shared a room with another woman. Danny was there every moment he wasn't in class. I rarely buzzed the nurses...Danny and mom even took on bedpan and sponge bath duty. Looking back, I don't know how a newly married 22 year old did the things he did...but as a result of his gentle, servant's heart, our first year afforded us the close bond that many couples don't form in 20 years.
Those 5 days seemed to last an eternity. I remember the first day I was allowed to walk. I'm sure I looked like a newborn horse trying to manuver my way to the bathroom for a shower. As soon as I walked out of the bathroom, there sat Dr. Brandon on my bed. "Why are your legs so red...that's not normal. Come sit beside me and dangle your legs off the bed...yep, not normal." And with that, I bought myself a few more days stay. They would give me a month on cholesterol medicine, blood thinners, and water pills. If the results weren't better in a month, a biopsy would be necessary.
The first few days at home were trying for me. I could do literally nothing for myself and I could contribute to our "house" in no way. I was little more than an invalid. I had to sit to take a shower and became exhausted doing so. I was so exhausted that Danny would come when I finished, wrap me in a towel, carry me to our bed and dry me. He would then help me dress and brush/dry my hair. Any pride or self reliant issues were long gone. God had humbled me and broken me of those in a very real way...a lesson I have to relearn sometimes but He is faithful to teach!
I remember being home those first few nights. I prayed almost non-stop and finally I got up the guts to ask God to heal me. I don't know that I "heard" God's audible voice, but I knew the answer was no as clear as anything I had ever heard. I asked again, again no. I pleaded a third time, NO this is the road I would have you walk. I have never asked for healing again.
After a month, I returned to the nephrologist. My numbers were worse than before. I was leaking 4000+mg of protein...but my kidney function was somehow still 100% A biopsy would provide answers and a plan.
I stood in front of my church that next Sunday to inform them of what was going on, what we needed, and how they could help. I remember giving a broad overview with tears streaming down my face. Then, with complete peace, I asked them not to pray for my healing but to pray for God's will to be done in my life so that He could be glorified. If that meant healing, so be it. If that meant suffering, I would suffer. And if that meant death (a very real possibility), I would praise Him all the more. I remember being chastised for not praying for just healing, something I still can not fathom. "You just need to have more faith..." they would say to me. I would just smile and nod.
I had (and still have) faith that God could heal me if He chose BUT also knew that God had granted me the faith to live/die for His glory if he chose not to heal me for His greater purpose. I didn't need to know that purpose to rest peacefully in it. God had spared me the thought of why me...He spares me from it still...something I am thankful for each and every day.
So with my heart and mind set on glorifying God with my life/suffering/death, I was scheduled for a biopsy on June 1, 1999...(part 4 coming tomorrow hopefully)
Monday, May 2, 2011
when april ends...part 2
Quick Recap: I've just turned 21 and been married for not quite 8 months. What initially was diagnosed as the flu turned into bronchitis turned into pneumonia that wouldn't go away. I've been coughing up blood, terribly in pain, insanely out of breath, with times of ridiculously high pulse and legs swelling. I was hospitalized for a week, put on IV antibiotics, diagnosed with a pleural effusion...and formed a friendship with a pulmonologist (this will become very important later!) They have sent me home with follow-up appointments scheduled and antibiotics to take in the meantime.
Part 2...
For some reason, I think my release took place on a Friday. I wouldn't see the doctor for a few days and those first few days seemed to go okay. I was extremely weak and tired quite easily but thought I was much better...until I started feeling like I was out of breath again. I've never had asthma, but this is what I imagine asthma to feel like. Just sitting, my heart would begin to race and I would grasp desperately for a breath. Walking was even worse. I believed, however, that I was on the mend...
I went for my follow-up appointment. Pulse was high. Blood Oxygen level was low. I became exhausted and out of breath walking from the waiting room to the exam room. I reported all of this and my strangely swollen legs to the doctor. He reassured me I was on the mend but wanted to see me again in 2 days. I returned in 2 days with same issues except now I was extremely nauseated all the time and vomiting everything I put in my body. "Probably caught a flu" he said "I'll write you a note for college for 2 more days and then you can go back"...so I went home.
I remember sitting that afternoon with Danny on the couch. We were watching a movie or tv or something. I couldn't breathe so I was leaning over. Danny was taking my pulse (a regular occurence lately) and rubbing my back trying to help me breathe. I sat up, looked at him and said, " I need you to take me to the ER." I don't remember the ride to the ER. I couldn't breathe so I was hunched over but that cleared when we pulled in the parking lot. I will never forget our dicussion once we arrived.
We debated whether or not we should go in. I had my list of reasons. The top one being that an ER visit cost $50 and I didn't know how we were going to pay for my last hospital stay. Next on the list was the fact that I had just seen the Dr and he had reassured me I was fine. I didn't want to feel like the hypochondriac patient...but my body was telling me NOTHING was okay. Danny was not going to hear it. We were going in...and in making that decision, he saved my life.
He walked me in, sat me down, and got all of the paperwork filled out. Everything was going in slow motion...not like the ER wait is forever and so you feel like life is in slow motion. I literally felt like everything was in slow motion. I was out of breath again and I could feel my heart racing. I remember looking down at my feet, chuckling and saying, "Well, that can't be good." "What?" Danny inquired...and I just pointed at my feet. "They're turning blue." I remember watching him go to the front desk. I don't know what he said or how I ended up in the triage area but I remember the nurse putting the cuff on my arm to get my stats. I remember her hitting a button, calling some code and being rushed into a crash room. It happened so fast but for me still felt like slow motion. I was confused and overwhelmed...but peaceful. The only thing I remember wanting was to see Danny...
I remember the nurse in the crash room. He was a young guy, probably just a few years older than me. He got really close to my face and said, "Your BP is 60/40 and your pulse is 145. I need to get an IV, oxygen and a heart monitor on you. I don't want to embarass you. Do you think you can take off your shirt and bra quickly or do I need to cut them off?" I nodded that I could. After all, I had become accustomed to high pulse rates. I remember how grateful I was that he had preserved my dignity and I quickly complied while he held up the gown and looked the other way. Then they went to work on me and everything seemed to just be blurry for a bit.
My next conscious memory is looking over and seeing Danny in a chair next to my bed. I could hear the beeps of all my machines and feel the push of oxygen into my nose. I looked over at him and pointed to him with my pointer finger (which had the glowing blood oxygen thing on it) and very seriously said, "ET phone home." What else was there to say? He laughed, I laughed. He told me our pastor and his wife were on the way as well as my parents.
I had stabilized so they were ready to start the process of tests. Blood draws - check. Urine sample - check. Chest X-Ray - check. Arterial Blood Draw to check oxygen level- OH MY! If you have never had one of these and you don't absolutely HAVE to have one - DON'T! Unlike a normal blood draw, they can't see the arteries so they have to go in "blind" and fish for it. One nurse tried 4 times before the pastor's wife advised her to get someone else. It took the next nurse 2 tries. The test came back that my blood oxygen was now in the acceptable range BUT the running of this test would prove to be my lifesaver later.
I don't know what I looked like, but I must have looked dead because that was the look I got whenever anyone (nurse, doctor or visitor) walked in the room. My mom said I was gray with blue lips. In retrospect, I wish someone had taken a picture although I probably would have been angry at the time. Finally the doctors came in with their diagnosis. I must have gotten a virus on top of my healing pneumonia. They would keep me overnight for observations and release me in the morning. It just didn't feel right...but they are doctors!
Now the GOD intervening part - Remember that pulmonologist, Dr. Weber, that I developed a friendship with? Well, he just happened to hang out late in the hospital that evening. As God would have it, he called the ER to inform them that he would be hanging around and if they needed him to give him a call. Remember that areterial blood ox draw that they nearly didn't get? Well, as God would have it, the results passed in front of him while he was just hanging out and MY NAME jumped out at him. He went to the ER to inquire but they assured him I had stabilized and been admitted. He was not pleased they didn't call him but would check on me the next morning.
My family doctors made early rounds. I was stable but still nauseated and unable to keep anything down. They wrote orders for some meds and would check back after lunch but were certain they would send me home that day. The nurse came in and gave me the nausea medicine through my IV. The next thing I remember was being unable to control my legs or arms or head. They were moving back and forth, round and round. I could hear my mom and understand her but I was unable to form words and communicate back to her. And, as God would have it, in walks Dr. Weber...
He tried to talk to me but I couldn't communicate back. My mom chimed in and explained what had gone on and that I had been like this since the shot. Disturbed by my inability to control my body or communicate, he went and demanded my chart. The doctors had placed a 0 at the end of the order and had inadvertantly given me 10 times the amount they should have. He assured me and my mom that this would wear off in an hour or so. He and my mom discussed my pulse and inability to breathe some and he looked straight at me and said words that would save my life. "Stephanie, as soon as this wears off, I want to run a test to check for blood clots in your lungs. I don't think you have them, but I thought about your case all night and felt an uneasiness. I just need to run this test so I can feel at peace."
I remember the test because I remember throwing up several times on the way there, during and after. I remember apologizing repeatedly to the poor tech who had to deal with it. He was gracious. I remember being back in my room just a few minutes when Dr Weber came in with unrelenting determination and orders.
"Your lungs are filled with blood clots. We are moving you to the cardiac floor. I would prefer for you to be in ICU but I know you will want company and you can't have that there. The cardiac floor is the next best thing. They will monitor you 24/7 and they are excellent nurses." With that, he pulled up the side of my bed, unlocked the brake and began to move me himself. This part seemed to fly by. Along the way, he began to explain that I would start blood thinner shots in my belly and pill blood thinners as well. I would not be able to put my legs down or put any pressure on my legs whatsoever for atleast 5 days. He also informed me that he would put standing orders that my family physicians could not make orders on my chart without his explicit supervision. In fact, he didn't even want them visiting me.
So God used Dr. Weber to save my life that day because as God would have it, we became friends...and as God would have it, Dr. Weber stayed late at work...and as God would have it, Dr. Weber saw my name amongst many come across the screen for my blood tests...and as God would have it, felt compelled to come visit me...and as God would have it, felt an uneasiness about my case and a need to run an "unlikely" test.
Now, the search for why begins...and that is Part 3 (hopefully I'll do it tomorrow)
Part 2...
For some reason, I think my release took place on a Friday. I wouldn't see the doctor for a few days and those first few days seemed to go okay. I was extremely weak and tired quite easily but thought I was much better...until I started feeling like I was out of breath again. I've never had asthma, but this is what I imagine asthma to feel like. Just sitting, my heart would begin to race and I would grasp desperately for a breath. Walking was even worse. I believed, however, that I was on the mend...
I went for my follow-up appointment. Pulse was high. Blood Oxygen level was low. I became exhausted and out of breath walking from the waiting room to the exam room. I reported all of this and my strangely swollen legs to the doctor. He reassured me I was on the mend but wanted to see me again in 2 days. I returned in 2 days with same issues except now I was extremely nauseated all the time and vomiting everything I put in my body. "Probably caught a flu" he said "I'll write you a note for college for 2 more days and then you can go back"...so I went home.
I remember sitting that afternoon with Danny on the couch. We were watching a movie or tv or something. I couldn't breathe so I was leaning over. Danny was taking my pulse (a regular occurence lately) and rubbing my back trying to help me breathe. I sat up, looked at him and said, " I need you to take me to the ER." I don't remember the ride to the ER. I couldn't breathe so I was hunched over but that cleared when we pulled in the parking lot. I will never forget our dicussion once we arrived.
We debated whether or not we should go in. I had my list of reasons. The top one being that an ER visit cost $50 and I didn't know how we were going to pay for my last hospital stay. Next on the list was the fact that I had just seen the Dr and he had reassured me I was fine. I didn't want to feel like the hypochondriac patient...but my body was telling me NOTHING was okay. Danny was not going to hear it. We were going in...and in making that decision, he saved my life.
He walked me in, sat me down, and got all of the paperwork filled out. Everything was going in slow motion...not like the ER wait is forever and so you feel like life is in slow motion. I literally felt like everything was in slow motion. I was out of breath again and I could feel my heart racing. I remember looking down at my feet, chuckling and saying, "Well, that can't be good." "What?" Danny inquired...and I just pointed at my feet. "They're turning blue." I remember watching him go to the front desk. I don't know what he said or how I ended up in the triage area but I remember the nurse putting the cuff on my arm to get my stats. I remember her hitting a button, calling some code and being rushed into a crash room. It happened so fast but for me still felt like slow motion. I was confused and overwhelmed...but peaceful. The only thing I remember wanting was to see Danny...
I remember the nurse in the crash room. He was a young guy, probably just a few years older than me. He got really close to my face and said, "Your BP is 60/40 and your pulse is 145. I need to get an IV, oxygen and a heart monitor on you. I don't want to embarass you. Do you think you can take off your shirt and bra quickly or do I need to cut them off?" I nodded that I could. After all, I had become accustomed to high pulse rates. I remember how grateful I was that he had preserved my dignity and I quickly complied while he held up the gown and looked the other way. Then they went to work on me and everything seemed to just be blurry for a bit.
My next conscious memory is looking over and seeing Danny in a chair next to my bed. I could hear the beeps of all my machines and feel the push of oxygen into my nose. I looked over at him and pointed to him with my pointer finger (which had the glowing blood oxygen thing on it) and very seriously said, "ET phone home." What else was there to say? He laughed, I laughed. He told me our pastor and his wife were on the way as well as my parents.
I had stabilized so they were ready to start the process of tests. Blood draws - check. Urine sample - check. Chest X-Ray - check. Arterial Blood Draw to check oxygen level- OH MY! If you have never had one of these and you don't absolutely HAVE to have one - DON'T! Unlike a normal blood draw, they can't see the arteries so they have to go in "blind" and fish for it. One nurse tried 4 times before the pastor's wife advised her to get someone else. It took the next nurse 2 tries. The test came back that my blood oxygen was now in the acceptable range BUT the running of this test would prove to be my lifesaver later.
I don't know what I looked like, but I must have looked dead because that was the look I got whenever anyone (nurse, doctor or visitor) walked in the room. My mom said I was gray with blue lips. In retrospect, I wish someone had taken a picture although I probably would have been angry at the time. Finally the doctors came in with their diagnosis. I must have gotten a virus on top of my healing pneumonia. They would keep me overnight for observations and release me in the morning. It just didn't feel right...but they are doctors!
Now the GOD intervening part - Remember that pulmonologist, Dr. Weber, that I developed a friendship with? Well, he just happened to hang out late in the hospital that evening. As God would have it, he called the ER to inform them that he would be hanging around and if they needed him to give him a call. Remember that areterial blood ox draw that they nearly didn't get? Well, as God would have it, the results passed in front of him while he was just hanging out and MY NAME jumped out at him. He went to the ER to inquire but they assured him I had stabilized and been admitted. He was not pleased they didn't call him but would check on me the next morning.
My family doctors made early rounds. I was stable but still nauseated and unable to keep anything down. They wrote orders for some meds and would check back after lunch but were certain they would send me home that day. The nurse came in and gave me the nausea medicine through my IV. The next thing I remember was being unable to control my legs or arms or head. They were moving back and forth, round and round. I could hear my mom and understand her but I was unable to form words and communicate back to her. And, as God would have it, in walks Dr. Weber...
He tried to talk to me but I couldn't communicate back. My mom chimed in and explained what had gone on and that I had been like this since the shot. Disturbed by my inability to control my body or communicate, he went and demanded my chart. The doctors had placed a 0 at the end of the order and had inadvertantly given me 10 times the amount they should have. He assured me and my mom that this would wear off in an hour or so. He and my mom discussed my pulse and inability to breathe some and he looked straight at me and said words that would save my life. "Stephanie, as soon as this wears off, I want to run a test to check for blood clots in your lungs. I don't think you have them, but I thought about your case all night and felt an uneasiness. I just need to run this test so I can feel at peace."
I remember the test because I remember throwing up several times on the way there, during and after. I remember apologizing repeatedly to the poor tech who had to deal with it. He was gracious. I remember being back in my room just a few minutes when Dr Weber came in with unrelenting determination and orders.
"Your lungs are filled with blood clots. We are moving you to the cardiac floor. I would prefer for you to be in ICU but I know you will want company and you can't have that there. The cardiac floor is the next best thing. They will monitor you 24/7 and they are excellent nurses." With that, he pulled up the side of my bed, unlocked the brake and began to move me himself. This part seemed to fly by. Along the way, he began to explain that I would start blood thinner shots in my belly and pill blood thinners as well. I would not be able to put my legs down or put any pressure on my legs whatsoever for atleast 5 days. He also informed me that he would put standing orders that my family physicians could not make orders on my chart without his explicit supervision. In fact, he didn't even want them visiting me.
So God used Dr. Weber to save my life that day because as God would have it, we became friends...and as God would have it, Dr. Weber stayed late at work...and as God would have it, Dr. Weber saw my name amongst many come across the screen for my blood tests...and as God would have it, felt compelled to come visit me...and as God would have it, felt an uneasiness about my case and a need to run an "unlikely" test.
Now, the search for why begins...and that is Part 3 (hopefully I'll do it tomorrow)
Sunday, May 1, 2011
when april ends...
Every year when April ends, I breathe a sigh of relief. It's not because I hate April or joyously anticipate May. It's because making it through April signifies the hope of another healthy year.
Here's my journey of health (or the lack thereof)...
PART 1
I was never sick as a child. I mean never. I never had an ear infection, major cold/flu/stomach virus etc. In high school, I tore my ACL and had to have knee surgery and got bronchitis a few times, both as a result of soccer...but was never really sick.
I went off to college and the same remained true. While everyone else was getting flu shots and taking vitamins like crazy so they didn't get sick, I was unaffected...atleast for the first two years.
Then, spring of my junior year hit. I had been married about 5 months when I came down with what we thought was just a bad case of the flu. After all, I was substitute teaching and doing my classroom observations so I was exposed to germs all day long. I just couldn't seem to kick it so I went to the doctor. Of course, he said it was just the flu so I went on with my regular life even though I felt terrible. A few weeks into this flu, I started coughing up blood. I don't know about you, but coughing up blood in my mind indicated TB or some other terrible lung disease so I went straight to the doctor. He said the flu had settled in my lungs and now was bronchitis...put me on some antibiotics and I should be fine...EXCEPT I wasn't. I continued to cough up blood but now it was also excruciatingly painful. I had trouble breathing and would become short of breath walking from the living room to the bathroom. So, I went back. "Pneumonia" he said and gave me a thick shot in the cheek and some more antibiotics. He said I should be back to normal in a week...but I was no where near "fine." So, he started having me come every other day. The "Pneumonia" was getting inexplicably worse...the pain was getting inexplicably worse...I was short of breath just standing...my legs would swell for no apparent reason...my heart would race (110+bpm) when I was sitting on the couch. After about 2 weeks of this, he admitted me to the hospital for IV antibiotics to treat my "pneumonia".
I checked in and they immediately put me in an isolation room...they couldn't be certain what I had and there was another A&M student that had been admitted recently with a rare, antibiotic resistant strand of pneumonia. On the first night there, they sent in a repiratory therapist to give me a breathing treatment and some percussive therapy to break up the congestion. When she awoke me and I opened my eyes, I thought I was dreaming because I recognized her immediately.
We weren't long lost friends or best friends or anything like that. I had met her a year earlier when I was working in the local christian bookstore. She came in about 7 months pregnant looking for some Bible study material. We struck up a conversation. It turned out that her husband had left her when she became pregnant. He didn't want kids. They had made a "deal" when they were married that they wouldn't have children. He had demanded that she either have an abortion or he would leave her. She would not abort...so she lost him. She didn't have any family living and so was all alone in this journey of loss and abandonment and single parenting and new life. I took my lunch break so we could go talk and pray and even cry. I gave her my phone number and we spoke and saw eachother several times over the next few months...then, I didn't hear from her. I tried to call but there was no answer and then the line was disconnected. I assumed she had moved. BUT there she was! She wasn't supposed to work that night but was covering someone else's shift. She cried when I said her name, both of us in complete disbelief. We caught up, she gave me the "treatment", we hugged and then she prayed the sweetest prayer of comfort over me I think I have ever heard. She was moving because another man (not her ex-husband) had chosen to love her and her son as his own and they were to be wed that weekend. We hugged again, knowing we would probably never see eachother this side of heaven. Seeing her was grace and mercy and love and compassion all rolled into one. It was the first blessing of my hospital stay.
The second blessing of my hospital stay was the pulmonologist assigned to my case. He said the pain was caused by a pleural effusion (fluid in the lining of my lung). He could drain it, but it would be highly likely that he would puncture my lung so he chose not to...a decision he would later lament. Although well into his 40's, he was intrigued by my case and by me. On his rounds, he would sit and talk with me about EVERYTHING...he would even come by after his rounds to spend a little more time chatting with me. Because of all my A&P, Biology and Chemistry exposure, I was able to converse intelligently about my case, treatment, etc. He wanted to know why I wasn't pre-med...when I told him God had led me away from a pre-med major to a teaching degree, he was even MORE intrigued. He was a new believer and wanted to know so much about my faith journey - where I had been, where I was, where I was going, what my favorite verse was, what I thought about... He was also soon to be married and so there were MANY questions about being a newlywed. If anyone had sat in on our little conversations, I'm sure they would have found it quite humerous. He was a 40something doctor asking life and faith questions to a just now 21 year old college student. BUT, we enjoyed our chats and the development of our friendship would play a key role much later...God had chosen him as my pulmonologist, given us common ground, developed our friendship for a very specific reason. He would use this doctor to literally save my life...
After a week in the hospital (in isolation mind you) on IV antibiotics and bedrest for the most part, I was feeling much better and my lung films looked clearer so they sent me home...something they never should have done!
Part 2 coming tomorrow (hopefully)
Here's my journey of health (or the lack thereof)...
PART 1
I was never sick as a child. I mean never. I never had an ear infection, major cold/flu/stomach virus etc. In high school, I tore my ACL and had to have knee surgery and got bronchitis a few times, both as a result of soccer...but was never really sick.
I went off to college and the same remained true. While everyone else was getting flu shots and taking vitamins like crazy so they didn't get sick, I was unaffected...atleast for the first two years.
Then, spring of my junior year hit. I had been married about 5 months when I came down with what we thought was just a bad case of the flu. After all, I was substitute teaching and doing my classroom observations so I was exposed to germs all day long. I just couldn't seem to kick it so I went to the doctor. Of course, he said it was just the flu so I went on with my regular life even though I felt terrible. A few weeks into this flu, I started coughing up blood. I don't know about you, but coughing up blood in my mind indicated TB or some other terrible lung disease so I went straight to the doctor. He said the flu had settled in my lungs and now was bronchitis...put me on some antibiotics and I should be fine...EXCEPT I wasn't. I continued to cough up blood but now it was also excruciatingly painful. I had trouble breathing and would become short of breath walking from the living room to the bathroom. So, I went back. "Pneumonia" he said and gave me a thick shot in the cheek and some more antibiotics. He said I should be back to normal in a week...but I was no where near "fine." So, he started having me come every other day. The "Pneumonia" was getting inexplicably worse...the pain was getting inexplicably worse...I was short of breath just standing...my legs would swell for no apparent reason...my heart would race (110+bpm) when I was sitting on the couch. After about 2 weeks of this, he admitted me to the hospital for IV antibiotics to treat my "pneumonia".
I checked in and they immediately put me in an isolation room...they couldn't be certain what I had and there was another A&M student that had been admitted recently with a rare, antibiotic resistant strand of pneumonia. On the first night there, they sent in a repiratory therapist to give me a breathing treatment and some percussive therapy to break up the congestion. When she awoke me and I opened my eyes, I thought I was dreaming because I recognized her immediately.
We weren't long lost friends or best friends or anything like that. I had met her a year earlier when I was working in the local christian bookstore. She came in about 7 months pregnant looking for some Bible study material. We struck up a conversation. It turned out that her husband had left her when she became pregnant. He didn't want kids. They had made a "deal" when they were married that they wouldn't have children. He had demanded that she either have an abortion or he would leave her. She would not abort...so she lost him. She didn't have any family living and so was all alone in this journey of loss and abandonment and single parenting and new life. I took my lunch break so we could go talk and pray and even cry. I gave her my phone number and we spoke and saw eachother several times over the next few months...then, I didn't hear from her. I tried to call but there was no answer and then the line was disconnected. I assumed she had moved. BUT there she was! She wasn't supposed to work that night but was covering someone else's shift. She cried when I said her name, both of us in complete disbelief. We caught up, she gave me the "treatment", we hugged and then she prayed the sweetest prayer of comfort over me I think I have ever heard. She was moving because another man (not her ex-husband) had chosen to love her and her son as his own and they were to be wed that weekend. We hugged again, knowing we would probably never see eachother this side of heaven. Seeing her was grace and mercy and love and compassion all rolled into one. It was the first blessing of my hospital stay.
The second blessing of my hospital stay was the pulmonologist assigned to my case. He said the pain was caused by a pleural effusion (fluid in the lining of my lung). He could drain it, but it would be highly likely that he would puncture my lung so he chose not to...a decision he would later lament. Although well into his 40's, he was intrigued by my case and by me. On his rounds, he would sit and talk with me about EVERYTHING...he would even come by after his rounds to spend a little more time chatting with me. Because of all my A&P, Biology and Chemistry exposure, I was able to converse intelligently about my case, treatment, etc. He wanted to know why I wasn't pre-med...when I told him God had led me away from a pre-med major to a teaching degree, he was even MORE intrigued. He was a new believer and wanted to know so much about my faith journey - where I had been, where I was, where I was going, what my favorite verse was, what I thought about... He was also soon to be married and so there were MANY questions about being a newlywed. If anyone had sat in on our little conversations, I'm sure they would have found it quite humerous. He was a 40something doctor asking life and faith questions to a just now 21 year old college student. BUT, we enjoyed our chats and the development of our friendship would play a key role much later...God had chosen him as my pulmonologist, given us common ground, developed our friendship for a very specific reason. He would use this doctor to literally save my life...
After a week in the hospital (in isolation mind you) on IV antibiotics and bedrest for the most part, I was feeling much better and my lung films looked clearer so they sent me home...something they never should have done!
Part 2 coming tomorrow (hopefully)
Subscribe to:
Posts (Atom)