Wednesday, October 5, 2011

Amyloidosis Primary Cardiac Multiple Organ Involvment

 I am repeating myself regarding keeping track of blood labs.  Many doctors are missing the diagnosis of Amyloidosis and I feel it is important to arm yourself with as much knowledge as you can.  In other words, help your doctor by educating yourself on the "disorder".  Each and every case is different, but there are some issues to look for.  I found a lot of useful information which helped me loosely understand what was going on technically with my dad's health.  Honestly, it was scary knowing that he his health was declining.  I thought I was prepared, NOT!  I guess my "platform" regarding this disorder is: Investigate - Educate - Assist.

I have questioned my dad's health many times during his Systemic Amyloidosis (Primary) treatment with oral chemo - Melphalan and Dexamethasone.  I am grateful that I did have a copy of his blood work prior to his first treatment.Okay, this is where the knowledge helps...

I do not have any type of medical background, but the blood work labs are easy to read.  There is a column which gives the patient's results and then another column for the result ranges.  In my dad's case, the large numbers which threw caution to me, were the cardiac numbers for the BNP and the Troponin I.  I compared the prior to chemo labs with the after chemo labs and noticed an increase in both numbers.  When he was tested for the first time for the Free Light Chains - lambda, those numbers were good but the BNP and Troponin I were climbing.  Yes, this can be a result of the chemo, but the BNP rose dramatically.  His kidneys were failing - he had protein loss in his urine - and his creatine levels were also abnormal.  The albumin went haywire and so on and so on.  Tracking these numbers put me in a state of knowing the worst was coming, but I wanted to deny the knowledge.  I struggled with this.  It was a case of wanting to know but also not wanting to know.

I completely endorse (for what that is worth!) going to a Center of Excellence prior to treatment if possible.  They have a cutting edge on this disease and can help to accurately concur with your local doctors on the best type of treatment.  Bone marrow biopsy is key for diagnosis.  In my dad's case he also tested positive for the fat pad biopsy.  Again, my opinion, the bone marrow biopsy would be key, since the misfolded proteins are generated in the marrow (remember, this is a non professional opinion).

We all know that "catching it early" is the best defense, but in the case of Amyloidosis, it is missed because of mimic symptoms.  Warning signs for my dad - which were missed - he did have herbicide exposure (Agent Orange)  and congestive heart failure.  CHF is not always an indicator, but can be a warning sign - especially if the patient is a Vietnam Vet.

Dad also had arrhythmias, which was also another indicator in his declining health.  And if you read my other posts, there were many symptoms he had & developed.  

I hope some of this info is helpful to someone who is involved with an Amyloidosis battle, whether it is a patient and/or family.  Hopefully, if you are reading this, you have "caught this early".  For me, what kept me going, was the need to keep dad's spirits high and give him support.  God speed.

Monday, June 6, 2011

Two Years Ago

Dad passed away two years ago from amyloidosis contributing to multi organ failure.  This is still hard to believe. I remember being in his hospital room the day before he died.  He was very weak.  The pain from shingles seemed to be less, but he was heavily medicated.  He did have pneumonia, in which he was getting breathing treatments via an oxygen mask.  He hated this...but this time, he did not fight with the nurses.  His head would bob and he would try real hard to open his eyes to see who was there.  I remember him looking at my brother.  He seemed to hold his gaze a bit longer on him.  It was hard to see him like this but at the same time, I was relieved he didn't seem to be in pain.    I wish I knew that would be the last time I would be with him.  We all have those at some point in life I guess.

Dad was not aware of the relationship of amyloidosis and agent orange, especially since he was stationed along the DMZ in Korea during the Vietnam War.  We all thought that the agent orange exposure was linked to veterans who served directly in Vietnam and we were not even thinking along this avenue.  We later found the link between systemic amyloidosis and agent orange a few weeks after dad died.

Dad had been diagnosed with congestive heart failure (hardening of the heart).  We were told by the doctors that this was not a death sentence, it is manageable.  Little did we know that this diagnosis was another marker for amyloidosis.

Fast forwarding to November 2009, dad had a lot of swelling from his abdomen to his toes.  This led him to the ER and again the diagnosis of congestive heart failure.  During this hospital stay, the term amyloidosis was mentioned.  As of then, dad began his fight.  He had been referred to another cardiologist and dad had a heart catheterization, then referred dad to a hematologist.  The hematologist scheduled dad for a bone marrow biopsy and fat pad biopsy.  The results did confirm Systemic Amyloidosis (Primary), with heart, GI, and kidney involvement.  The course of "treatment" would be chemo.  I urge anyone who has congestive heart failure/amyloidosis to obtain copies of their blood work and pay special attention to BNP and Troponin 1 results prior to chemo.  These results can be compared before and after chemo.  Yes, the doctors should be able to relay the results, but having a hard copy and keeping track of these numbers yourself is beneficial if you want to track what is going on with the patients health.  I am not saying any other results are not important, they definitely are and you will be able to tell which ones...even if you are not in the medical field----which I am not! Now, I am not taking anything away or dismissing doctors, but there is not enough education/knowledge in the way of diagnosing early symptoms, since amyloidosis is considered a rare disease. 

Getting back to the BNP and Troponin 1 results, these have recently become "advertised" markers in the condition of the heart, for patients with amyloidosis with heart involvement.  We were told that my dad's BNP results were high because of his chemo, which more than likely contributed to the high number, but prior to having any chemo, his BNP was extremely high - way out of normal range.  This is the same for the Troponin 1. 

What I am advocating is to arm yourself with as much information you can on this disease.  Personally lobby for the tests and information you need.  Don't be afraid to ask your doctor questions and give him information as well. 

Thursday, May 5, 2011

Family Issues

A month and one day from today will be 2 years since my dad succumbed to Amyloidosis. Someone once told me that "it's only a number" in the term of an anniversary of death and it does not help in the grieving process in order to "move on." I personally disagree. For me, acknowledging my dad's date of death aids in my grieving process. Yes, I am marking the saddest day of my life, but I also revisit memories and think about how lucky I was to have him for my dad.

I did have some extremely hard issues to cope with within the first year of dad's death. My personality trait of loyalty is very deep-seated. My parents had a good marriage and as mother has said "the first years were tough (as in many) but the past 20 years were wonderful." It was (is) very hard to accept her becoming involved with another man 10 months after my dad's death. I acknowledge that there are no rules for grieving and that losing a spouse is a very lonely life. Understanding, however, our family is close knit and supportive, I felt betrayed. I clearly comprehended my brother, mother, and I were thrust into living life without dad and we all felt alone, even though we had each other. We - as a family - worked on helping one another but my brother and I were sensitive to mother.

To explain "betrayed" - admittedly, the marriage was loving and strong, so then how could she let herself become involved in another relationship. My God! dad is not even gone from us that long...WOW! Ok, I then thought she is extremely lonely, but she did have her family and friends, AND ok, no intimate partner - she is desperately trying to recover some of the intimacy? She needed some type of professional help. I did tell her I NEVER expected her not to find someone, I just thought she'd begin to heal first (along with the rest of us).

My brother said he thought I was fighting the fight for my dad since he isn't here. This is true - part of my loyalty. Mother thought I was feeling guilty for the way I've treated my dad. YES, TRUE!! I do have regrets, however, dad knew I ultimately had his back. He KNEW I was there for him!

I could not get past her actions and we had to choose our life's path which leads us in different directions.

If you have read thru this, I apologize for the therapy session!!!

Sunday, June 6, 2010

A year ago...

Today marks a year since my dad died, which still feels surreal. I have thought about him every day, and will continue to think about him on a daily basis. The grief will remain with me for a long time. Time is supposed to heal wounds, but this wound is very very deep and does not show any signs of healing. I am grateful that I have suppressed the memories (to a degree) of dad being in the hospital from May-June last year. He suffered too much and fought so hard. To see a man that is your hero - dad - suffer, weaken, dramatically change physically and emotionally, it hurts your heart and mind. Luckily, my mom, my girls, my brother and I have a stronger family bond and I know my dad would be very proud of this fact.

We all know that death is a part of life, however, losing a family member to this awful disease and seeing the discomfort in your loved ones face, is what truly breaks your heart.

Saturday, November 21, 2009

Reflecting

I know I said my blog ended in June, however, I have been rereading the blog and I noticed my anger and frustration/confusion and felt I had to clarify where I was mentally and where I am at now.

The frustration, anger, confusion..., first came via the local doctors treating my dad. Unfortunately, amyloidosis is not a common condition in which the doctors treat on a daily basis. I am NOT saying cancer is just a wave of the hand, but doctors are more educated in treating cancer versus amyloidosis. Since amyloidosis is not a cancer, but can mimic multiple myeloma, the conditions ARE different. More education/awareness needs brought to attention to the medical field. Actually, not just the medical field, but the public as well.

The local doctors brought hope to us as a family stating my dad's heart was "strong" but recently after reviewing his lab reports, the word "strong" was only half correct. "Strong" was his heart is still beating, yet, his BNP and Troponin I levels contradicted the statement. I acknowledge the BNP reflects congestive heart failure but also played a major role in his heart function. Dad's numbers were in the three thousands while the normal ranges are below 100 (the lab numbers can vary up to 900 which is severe). We knew his range was critical but we kept hearing from the doctors that his heart was strong. We, of course, held on to the positive and did not want to accept hearing any different. Denial. In the back of our minds, we knew something was very, very wrong, however that tiny window of hope was our temporary salvation. I am not saying all the doctors should have been like the grim reaper, but the explanation given to us regarding his strong heart was more of a word game. Thus, leading to our not wanting him to stay with the hospital where he was given the morphine pump. This group of doctors who organized the "family meeting" was correct in saying dad was critical.

Another issue is the chemotherapy. Many of dad's symptoms of the amyloidosis mocked the side effects of the chemo. As I reflect on this, I revisit the anger and frustration of the lack of knowledge of this condition. I still waver whether he should have had the chemo treatments at all. Yes, his lambda light chains did go down but his severity of this condition prior to the chemo was extremely grave to begin with. I often wonder if he would have been more comfortable without the treatments. Would he have had less pain? I feel he should have been educated more as a patient by his doctor of where this condition rated with chemo and without. Given a more explanatory option. This is where the centers of excellence definitely comes in to "play". Before any treatment begins, it is MY belief that one of these centers should be given the chance to evaluate the patient before any treatment begins. Maybe the same circumstances would have occurred and maybe not. The lack of knowledge by the medical community and public is deafening.

I am still grieving my dads passing, but I am at peace with the family decisions we made in trying to do all we could to aid dad in fighting amyloidosis. We did not give up hope, and I know he knew we were with him all the way. He was the one fighting the battle, but we were there for giving loving support/encouragement.

Wednesday, June 17, 2009

Dad's Amyloid Fight

There is not one single minute that goes by without thinking about my dad. I keep rewinding my mind. I think about when the doctor told us that dad had Amyloidosis. Of course, I immediately turned to the internet and began my "obsession" with researching this disease. As I processed the information, I was crudely reminded that the prognosis is poor with AL (Primary) Amyloidosis with cardiac involvement. Dad's BNP was 3600's. (no, no typo) The edema was bad. His stomach was so swollen. His appetite was not there, plus he was having difficulty swallowing. The cough, extreme tiredness during the day, and restless nights, the weakness, all the tests he went through, the poking of needles, the time he said he was not ready to go yet. My heart aches.

I will never be able to hug him again, see his blue eyes, see the joy & pride in his eyes when he sees his granddaughters, hear him say my name, pick up the phone and ask him what he is doing, ask him questions about what is wrong with my car, buy him holiday gifts, cook him his favorite dinner, nor will I be able to just visit with him.

I wanted to tell him so much. I wanted to apologize for my teenage years and for any disappointments I may have caused him. I wanted to tell him how important he is to me, my husband, and my daughters. I wanted to tell him that I was not ready either for him to go. I didn't get to say any of this because I did not want to scare him or have him think that I was preparing for him to go. I did tell him very often: I love you daddy. I feel some minor comfort knowing he knew I loved him.

I've been told it gets easier in time. I understand that, but the pain of losing my dad will never be easy. Remembering his fight with this disease, will never be easy.

My mom and I sit back and think about when dad almost passed out at work one day, was this a warning sign, then my mom said that sometimes my dad complained that his body hurt - even a slightest touch, he also complained about his stomach. His color was ashen for a while, which we assumed he was in some pain from his bad hip. In May 2008, dad saw his Cardiologist and had an Echocardiogram. The technician mentioned to my dad that he had a "hard heart". My dad joked that the technician must have been talking to my mom before the test. Were all of these symptoms early signs of Amyloidosis?? We came to the conclusion that they must have been, however, even if dad saw a doctor for these symptoms, we believe he would not have been tested for Amyloidosis. It is of no comfort, but represents the long delay of diagnosis.

After my researching, I knew dad's prognosis was not good. My husband and I would talk about this and we both "knew", but I did not want to accept it. I kept faith and hope and prayed. I was encouraged when dad excelled from his brain surgery. He healed quickly. He also made progress with his lambda light chains. Although, the down side was, the damage was already done. There were many, many ups and downs.

My blog ends here. I hope my dad's amyloid fight will help in some way, someone who is also fighting this disease or someone who is supporting their loved one.

I will forever love and miss my dad.

Saturday, June 6, 2009

I LOVE YOU DAD

George Wojtowicz, my Dad, passed away this morning.