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Suffering in Silence
This is my story and how my medical illness almost caused my demise on this cool September 28, 2011 night.
Looking back at my life, I was never really a healthy person but I was always this vibrant bubbly, energetic girl that was full of life, probably too much as I look back but I just loved living life. I’ve spent years going back and forth to the Specialist about my kidneys but just found a balance to deal with it.
Through the years I had been back and forth to ENT Doctors as well, my hearing loss would come and go, almost feeling like I was submerged under water so I had numerous tubes inserted but I just became accustom to dealing with this. I can honestly say that after the birth of my last son four years ago, it seemed to spiral out of control where I was finding that I was losing weight unexpectedly, not being able to eat, sick a lot and missing quiet some time from work. To me, it would seem like if anyone around me was sick, I would just get sick and I just couldn’t fight this anymore and I knew that something was wrong, especially with my kidney function but as days passed it would seem to get better and then worsen again.
As I suffered in silence, no one would even realize what this was causing me. Mornings I would get up, do my hair, put my make up on and just prior to going to work, would throw up, wipe my face as if nothing had happened, put on the brave face and again this became part of my everyday life. I would struggle to eat on most days and to get through the day in general but I knew my family (kids) counted on me so I knew I had to pursue on.
As time passed I developed this lung issue where I would struggle to take a deep breath and would get this bizarre cough. I couldn’t explain it as I was not a smoker and again this would come and go unexpectedly. I went to the doctor with this issue and as he listened to my chest, he said “I don’t hear no crackling or wooziness which I knew he wouldn’t anyway as it didn’t present itself like that. He proceeded to look down my throat and said he seen nothing but I knew there was something that just wasn’t right. He did go on to say I can send you for a chest x-ray but I guess didn’t feel it was warranted at that time and I didn’t question my GP.
Weeks passed again and long behold I ended up with this sinus infection or what I thought was a sinus infection, I was treated for that and given Flonase and again I was off to deal with this other problem.
During the summer months this past year, I would find myself wearing sweaters and having to use blankets at work just to keep warm and still sometimes shaking uncontrollably because I was so cold. The things I once thrived on didn’t seem to matter anymore. I would come home from work and go directly to bed as I would be so tired and my husband was left to deal with this so called life of ours.
I started experiencing swelling issues in my feet. One night I had noticed my right foot was swollen and very hard to walk on but by the next morning it had passed so really never thought much of it until long behold a week later my left foot had swollen beyond belief, I could not walk or move my foot in any which way as the pain would just radiant up my leg. So again, I went to my GP to try and figure out what was going on. He felt it wasn’t an infection as it was moving from one leg to another so he said it was the gout. He wanted me to get blood work done before he would start treatment. Before I left the office that day, he told me if the swelling started to proceed up the back of my leg, he was wrong and that this wasn’t the gout and it was in true an infection. So off I went and got blood work until long behold the swelling returned back to my right foot so again I went back to the doctor which was a replacement GP for my own, so I briefly explained to her what was happening to me and she had suspected Lupus and that she would run some blood tests on top of what was ran as the gout test came back negative and that my creatinine level was very elevated and my blood levels were severely off. As I left there that day, I thought to myself “what is Lupus?” and could I possibly have this after all these years?? Not putting too much thought into it until I got this next round of blood work, I was determined to fight this with whatever I had left in me. A follow up appointment was made to get my results that following Friday but never made it.
I knew something was really wrong which brought me to the HSC that cool Wednesday night. As they drew blood, I felt that something was taking over my body but never realized in my wildest dreams the news that I was about to be given eight days later. That night as they proceeded to triage me, I kept trying to tell myself that this is minor that in a few short hours I would be home with my family. Dr. Young in the ER Department came in to tell me that my blood for my age wasn’t adding up, something was not right so they decided to admit me into hospital. The next morning I was seen by Dr. Traheys Internal Medicine Team for a medical evaluation to try and piece this puzzle together. Days passed and still nothing as they were running multiple blood tests thinking it could be Lupus but all tests were coming back negative. The next evening, they came into my room suspecting I had TB, I was immediately put on isolation in the Negative Chamber Room at the HSC to protect myself and anyone else that will come into contact with me until they could confirm 100% for sure that this was TB. As I was told that night, I would not be allowed to leave this room and if anyone wanted to see me, they would have to wear a gown, mask and gloves to be allowed in, I could feel myself melting in sadness with sorrow for all those people I may have affected and as they told my family as I watched through a small window, my heart was bleeding, it felt like I was a prisoner in a jail but feeling so scared and terrified. Still not knowing if this was TB, all we could do now was wait until the results started to come back.
The next day they scheduled a Bronchoscopy to see what damage was done to my lungs and to confirm if this was TB as TB attacks the respiratory system. The news wasn’t good, they discovered I had cavities and a lesion in both lungs, thinking now there was a possibility this was cancer. The lung specialist informed me that the damage was that bad that I was about ten days away from a pulmonary haemorrhage where there would of been no point of return. He wanted to confirm if this in fact was TB as all the signs were leading to this. As he walked away, I thought could this be really happening and feeling again so scared beyond belief as I really didn’t know what consumed this body of mine. I had asked God, would this be the night my kidneys would fail and I would take my last breath. This was a so rapid and there was nothing I could do to stop it.
The following morning, they had booked me in for a CT scan to get a better picture of what was happening and that’s when they discovered my both kidneys were affected along with numerous stones and cavities in each lung. Once I returned to my room I sensed a piece of me dying bit by bit, slowly feeling a loss of myself with it. Dr. Trahey's team informed that my blood level had now dropped to 82 and was soon in need of a blood transfusion and that my Creatinine level was upwards to 700 which meant I was having acute renal failure and I was getting close to dialysis.
My husband had now taken on the role of a father, mother and care giver. I was just forced on this emotional rollercoaster and I just wanted to get off. Between my husband, mother and sister, they would take turns trying to stabilize me emotionally as they watched this hell I was going through. Through this process I had a great support team, from my kids to my family and friends. They gave me the strength I needed and the prayers I so longed for to beat this. Days passed with no resolution; left me questioning has to if this was even TB. They performed a TB skin test which would take 48 hours to show a positive sign for TB but long behold 48 hours later, no sign of anything. I was referred to by my team of doctors as the “The House Mystery” and as they kept testing and meeting each night to discuss my case, as they would come up empty handed.
All my blood work for TB came back negative; time was running out as I felt my body slowly fading. I remember the eighth day into it, it was about 7:30 at night and according to my team of doctors they finally threw their hands into the air as one of the blood tests that were performed came back positive for Wegener’s Granulomatosis. This was the breakthrough that we’ve been finally waiting for all this time. At least now they’ve had an answer and explanation for the destruction that was caused to my body and now they can start treatment.
They informed me of this condition still questioning what this was and if I would ever recover but ensured me this was the first step in the right direction to try and reverse what has been done. They started me immediately on IV Steroids for three consecutive nights as this was the most rapidly form of Wegener’s they had ever seen. They used the words “We have hit this hard as it’s attacked everything”. The next morning the Rheumatology doctors recommended to put me on IV Cyclophosphamide but my Nephrologists insisted this should not be done as it would have killed me so the best option would be pill form because my kidney function was so high. So the course of treatment now for this disease is a very high dose of Prednisone and Cyclophosphamide until this disease burns itself out.
I was seen as the days passed by numerous doctors specializing in their particular field to advise of their findings and what needed to be done. In order to confirm Wegener’s, a kidney biopsy had to be performed which terrified me but had no choice in the matter, this had to be done. They had taken three samples of my left kidney confirming 100% that this was indeed Wegener’s.
Its gut wrenching knowing I have this but I must fight, fight with everything I have in me. I want to see my kids grow up and have a family of their own. Every night before I go to sleep, I ask God to protect me and get me through the night and every morning when I awake, I thank God he gave me another day. The things I took for granted in life are no longer, as I now appreciate the simple things in life. My perspective on life has completely changed and the things I once thought mattered don’t matter so much anymore.
Time is precious and I want to spend all I’ve got with my children, after spending fifteen days in hospital, they finally let me go home. The week to come was filled with numerous appointments with different specialists plus monitoring my blood work very closely as an outpatient. I was out of the hospital only nine days when I got a call from my Nephrologists wanting to see me the next morning at 10:00 to discuss possible dialysis but as I awoke that morning, I knew there was something wrong, I was having chest pains and I knew immediately I had to go to the hospital but instead waited for my appointment to see Dr. Curtis. I was told by Dr. Curtis I was in Acute Renal failure, my creatinine level was now at 800 and they were waiting for me down in the emergency department to have a temporary shunt put into my neck. I didn’t have time to even digest what was happening; I remember the nurse hauling the curtain across as another was taking my top off to put me into a gown. The doctors came by to explain the procedure that was about to happen, not even realizing the true seriousness of the situation, the temporary lines were installed and I was off to get dialysis. I remember a terrible feeling coming over me as I was rolled into the dialysis unit, I guess fearing the unknown but so weak and tired, unable to fight. They informed my husband that they had to give me a blood transfusion so as they started giving me blood, I started to shake uncontrollably so they assumed I was having an allergic reaction so they had to stop the transfusion, send it off to the lab and get new blood reissued. Not long after that, I remember a lady right across from me going into code blue. I was terrified that this would be me, there were doctors and nurses coming from everywhere and everything was chaotic. My doctors pulled my curtain promptly, aware of my emotional state but reassured me everything would be ok and that this was not a normal situation. I prayed to God to get me through this and really can’t remember much more that night.
This was all supposed to be temporary as the doctors thought I would need only a few treatments and once the drugs kicked in, my creatinine level would return to normal but that never happened. 1 in 5 rejects the chemo drug which was the main course of treatment and of course I was in that 20% so my Wegener’s was inside tearing apart my kidneys. Before I got discharged from the hospital, they informed me that I would be getting permanent lines put into my neck so I knew then, I had a long road ahead of me and my kidneys were in serious trouble. The doctors gave me a schedule for dialysis, three days a week for three hours at a time. This was life now until the Wegener’s settled down to see how much scar tissue there would be to see if my kidneys would ever start working again. As months went by the doctors informed me there was too much damage done and that I wouldn’t regain any function of my kidneys, what a blow this was, I wept as my mom was by my side knowing my life as I know it was gone, just like that, my life now would be coming to the hospital to have my blood cleaned as my kidneys could no longer filter the toxins in my blood and if I didn’t come I would die.
Months ago, I was in the prime of my life, travelling, enjoying life with my kids, golfing, dancing at the Dance Centre, playing volleyball/softball and just like that, it was gone. No longer could I do any of these things I loved and once thrived on. I’ve had about sixty treatments and many more to come until I can get my kidney transplant which haven’t been the easiest on me, I often say as each week passes, I feel more and more of my spirit being lost, its literally sucking the life out of me. Not only are we dealing with the lose of my kidneys; I also have a disease that is incurable as well.
In order to be considered for a transplant, my Wegener’s must be in remission for at least a year and it takes eight months or more to work a donor. To determine if my Wegener’s has settled, they run this ANCA blood screen. When I was first diagnosed my ANCA score was well over a hundred, so they re ran this blood test in January and my ANCA score was at seventy and then in February, it dropped to thirty, so we know the Wegener’s is settling, the doctors and more concerned with how I’m feeling and looking.
Overall, I feel much better then I have been as I still have good and bad days, more bad then good and I’m tired often but that’s normal considering what my body’s been through, so I’ve been resting a lot. I’ve come a long way but still got a long way to go so I take it one day at a time. I have gained thirty pounds since I’ve been sick and my face as been distorted due to the Prednisone and a bag of other pills that accompany them. I often pass people I know and they just walk on by, not even recognizing me. It hurts to look into the mirror as I don’t see myself anymore but the doctor’s have said that this is all temporary and I just have to trust in what they say. My family repeats to me daily, “I’m beautiful” but it’s hard to believe this as I don’t even recognize myself.
I had a recent discussion with Dr. Barrett and he believes we can proceed to work my donor which usually takes eight months as there are numerous tests that have to be ran, OR times and planes have to be booked as they don’t do transplants here in Newfoundland while my body continues to heal. He said he was going to call the transplant coordinator to get this process started, he said there would be no reason why we couldn’t start the process to look for a donor now. As he left, he gave me her number and I thought to myself, could this nightmare soon be over. I know I’ve got a long way and a huge hurdle but at least this is the first positive thing in five months and definitely something to look forward too. As my mom entered the room, I couldn’t control my emotions any longer, tears just flooded my cheek and as I told mom what was just said as I held out my hand for hers, I was overwhelmed by all these emotions. She has been with me every step of this journey, every doctor’s appointment, every dialysis treatment; she has not left my side. She has seen me at my lowest of lows and my highest of highs and this was definitely a high since I‘ve been sick.
Last year was a hard year on me and my family, we first lost my uncle to brain cancer in the summer, I was diagnosed with Wegener’s in October and one of my biggest supporters passed away in December and a cousin died in a car accident. It was a Saturday morning and I was in the bath tub and as my husband entered the room, I knew instantly something was wrong. As he hung his head he began to break the news that my grandmother had just passed, to a person who was so emotionally fragile, I could feel myself getting sick and as I thought to myself why now, why her. She was in good health for her age, no present signs of sickness at all so this was very sudden and unexpected. The night before she had called the house but I was too sick to talk to her so I remember my mom on the loveseat beside me talking to her and she said to my mom to tell me that she loved me and that she wishes she could take my spot. How I wish I could go back and hear her voice that day, she was a very special lady to me. We loved each other dearly and I guess she wanted to protect me and I believe God took her in my place as she offered her soul; it was hers that he choose. It’s been so rough but I have faith that this year will be better.
So as I move forward in hopes of a kidney transplant in the near future, I often think of the hand I’ve been dealt but must remain positive as God will only give one what they can handle. My journey has really only begun and I’m sure there will be speed bumps ahead but with the support from my family and friends I feel confident I will over come any obstacles that will get in my way. My aunt sent me this poem as I recite it daily, one day at a time is enough….don’t look back and grieve the past, its gone…..don’t be troubled about the future, it has not come yet…live in the present and make it so beautiful it will be worth remembering.
Karen
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Originally Posted by KarenH
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