Dad's Amyloid Fight

Amyloidosis Primary Cardiac Multiple Organ Involvment

2011-10-05T15:11:00.001-04:00

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.

Two Years Ago

2011-06-06T09:53:00.000-04:00

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.

Family Issues

2011-05-05T11:40:00.003-04:00

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!!!

A year ago...

2010-06-06T19:20:00.004-04:00

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.

Reflecting

2009-11-21T09:40:00.005-05:00

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.

Dad's Amyloid Fight

2009-06-17T10:52:00.003-04:00

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.

I LOVE YOU DAD

2009-06-06T13:29:00.002-04:00

George Wojtowicz, my Dad, passed away this morning.

2009-06-06T07:47:00.002-04:00

Dad now has pneominia to battle. He does not seem to be in pain currently from the shingles. He has been on Percocet for the pain but that has decreased and yesterday, he was dispondent. He was given a reverse of the Perc. and became more responsive.

His albumin and sodium levels are low, and he does still have swelling in his knees up through his abdomen.

Test Results

2009-06-02T07:46:00.002-04:00

Dad had the barium test yesterday and he did not do very well. He has to keep the feeding tube. Since it bothers him a great deal in his nose, they will be putting it in his stomach...presumably today. The doctors told my mom that they may be able to release dad by the end of the week. He will be so much more comfortable at home. The doctors do not seem as concerned about the amyloidosis as much as they are about his heart condition. He does have arrhythmias...about 2 times a day...and not long...but the doctors believe that his edema is from his congestive heart failure. They are still giving him Lasix, but not quite as much since he has low blood pressure to begin with. So, needless to say, there are some hurdles to overcome, but we will fight them with dad the entire way.

May 31, 2009

2009-06-01T08:17:00.002-04:00

On Friday, Bill, Ris & I went in to to visit dad. While sitting in traffic, mom calls telling me to hurry because dad is not responding...nurses are trying to wake him. Of course, we panic. When we get there, I talked with the doctor and he said that dad never lost his vitals, he was given pain meds prior to this episode which made him despondent. They had to give him a reversal of what they had administered for him to respond. A sigh of relief. We go in to see dad and he is awake but in pain. The pain is coming from shingles and as I believe, Neuropathy. Yes, as if dad did not have enough to deal with, he broke out with shingles. This was a bad day for him.

Saturday was a little less painful for him. He did not get much sleep.

Sunday, my brother and I were there with dad...we wanted mom to go home and "relax". Dad was noticeably in less pain but the pain did come and go. His labs show his potassium and magnesium are down, so he had to be supplemented. He hates the feeding tube. Also, he does not like the breathing treatments he is getting...he gets an oxygen mask with vapors and it is uncomfortable because of the feeding tube...the mask does not fit right. He still has that nasty cough that sounds somewhat dry. He is still losing protein in his urine. Dad's abdomen is still full but his legs look good. Minor swelling in the feet. His blood pressure is remaining steady...top numbers have been in the 90's and high 80's. He plainly just feels miserable.

Disbelief

2009-05-27T13:11:00.003-04:00

As you can see, my dad is on a roller-coaster ride; as well as the rest of the family. I am relieved to say, dad has left the hospital that had placed him in "serious condition" and was transferred back to his hospital of choice,Allegheny General Hospital (AGH). The reason for the transfer is, he was on the Oncology floor at the other hospital...with the Hematologist saying that dad is not strong enough to take on another round of chemotherapy. (We accept that explanation) however, his ASSociates stated that they were going to help him stay comfortable and pain free...since he was having the pain in his groin area...also, the abdominal swelling and pain were being caused from his heart condition...he was given a Morphine pump to administer for himself...then on Monday morning, I get a call from my mom stating the Hematologist's ASSociates want to speak with the family...Now we get extremely scared...We attend the family meeting with the ASSociates and they tell us that my dad's condition has declined daily. They stated he has shown no improvement since the beginning of his treatment. Then my husband got angry and wanted to know what their plan of action was...the response he received was to have my dad remain "comfortable". Backing up to Sunday, my mother called dad's Cardiologist at AGH and we told him that my dad was dumping protein, that his albumin level was low and that dad did not eat anything since Friday morning before being transported to this hospital. Dad's cardiologist said that it was very important for dad to receive some nutrition especially since he is losing fluids (via Lasix). A feeding tube was placed and X-rayed and readjusted and re X-rayed and then a few hours later, after the last X-ray was read, he was given the formula.

We had a private family meeting and wanted dad to be released from this hospital to the care of AGH. We were put off...then on Tuesday, finally, after arguing with the social worker, we got dad out of there.

To make this long story short, dad's heart is not in serious condition to where we have to prepare for the worse now...and his groin pain in lessening...I am not sure as of yet about his swelling...all in all, I feel that God answered the prayers sent for my dad and got him out of that hospital where he was put in unworthy care and placed back into the hands of a better hospital system.

So...we do not know what my dad's Lambda Light Chains are reading, but he does need to regain his strength to receive any chemo - if necessary. The Cardiac Team at AGH will continue to follow him and he may need to see a Nephrologist for his protein loss in his kidneys. I feel we are back on the right track.

Thank you all for your prayers! God bless all of you

Dad

2009-05-24T21:17:00.002-04:00

Dad is not able to eat solids or drink on his own. He has a feeding tube in as of today. He has not eaten since Friday morning. Dad had to have a test where he drinks barium and has an x-ray for his throat...and he is pooling fluid there and the doctors are afraid that he will aspirate. Also, his voice is a whisper...we have to actually put our ear to his mouth to hear him. He is losing protein in his urine and his albumin level is low. He is having the arrhythmias, but they are not for more than 20 beats. He is having pain in his groin; he has had x-rays and scans to verify if he has a clot...the tests do not show any clots; the doctors think that the edema must be causing the pain. His abdomen is significantly swollen...he also says that he is having pain there as well. Dad's blood pressure dropped to 72 last night and my mom got very scared...the doctors were considering admitting him to ICU but he was closely monitored and his pressure went back up to his normal (86). His arms are swollen as well, in order for his blood pressure to be taken, he has to have a doppler on his foot to find his pulse and the cuff is placed on his calf.

Please continue praying for him please.

Please Pray

2009-05-22T12:55:00.001-04:00

My mom spoke with the doctors today and dad is in very poor condition. Please pray for him!!

May 21 Events

2009-05-22T00:19:00.002-04:00

I have to share with you a conversation my dad's physical therapist had with my mom...the PT asked my mom if she was aware of my dad's arrhythmias and "has anyone explained what can happen" she told my mom that my dad's is in very grave condition...that his heart is very weak and he could die suddenly in his sleep...also she said she was considering not sending my dad to his appointment with his hematologist because she was not sure my dad could with-stand the trip there. OK this really scared my mom!!! Everything this physical therapist said contradicted what the Cardiac Team at the hospital told my mom just a few days ago. I told my mom to contact the Cardiologist from the hospital and reiterate to them what the PT said. So mom did and the Drs are at a loss as to why this PT said what she did. Yes, dad's heart is in poor condition however, his injection fraction has increased in a positive way, he does have arrhythmias but not for a "long" period, the Drs feel his heart is "manageable". I will keep my opinions to myself about the PT.
Dad cannot complete physical therapy. His legs are giving him some pain. The Rehab. facility decided to release him and send him to the hospital where his hematologist is. (By the way, he did "with-stand" the trip) Tomorrow, dad is to be examined by the hematologist. He is being treated for the abdominal swelling...he is retaining fluid in his stomach...and in his thighs...with Lasix via IV. Dad did say his left leg is feeling better, but the right leg...the side where he had the total hip replacement in Oct. 08...is giving him some pain.

Changes

2009-05-20T22:14:00.002-04:00

Dad is currently at a Rehabilitation Center. He is having trouble with his legs. He says he cannot move them and when anyone touches his legs, he says it hurts. So, the neuropathy is rearing it's ugliness. He also says his legs feel heavy...the swelling is not even close to the way they were when he fell...much less swelling currently. He is depressed because he can not do things for himself.

Another Update

2009-05-16T11:29:00.004-04:00

Dad is still in the hospital. The Cardiac Care Team did not think that the IHD would benefit dad. They said since dad's injection fraction is at 48% it is not their procedure to implant - they usually implant when the injection fraction is at 35% or less. That was good news for dad and us. One less procedure he has to recover from. Plus he was not real "wild" about how the IHD works...as in the "punch" in the chest he would feel if the IHD was activated.

He is still weak. He has been confined to a hospital bed for 2 weeks and has a hard time getting up to walk, for his physical therapy. The nurses did try to get him up to walk a few days ago but his muscles are not ready. He will be transferred to a physical therapy center for rehabilitation... we are hoping for this coming Monday.

Dad is sleepy a lot. But I guess that is to be expected from the head trauma he's been through. He has missed a month of chemo and his Hematologist wants to see him as soon as dad is able...for a check-up and if he can tolerate another dose of chemo, if it is necessary.

Bill, the girls, and I are planning on visiting with dad today. Dad is bummed that he missed Ris's Senior Prom yesterday...we took lots of pictures for him. Mom went with me, to the Grand March and got to see Ris and James (boyfriend) in their formal wear. This was good for mom, she has been going to the hospital daily and staying there all day and most of the evening. She needed some time of her own. What better way, than to spend it with her grandaughters!

Making Progress

2009-05-13T08:56:00.002-04:00

Yesterday, dad had a heart cath. in his right ventricle...it revealed no changes but his ejection fraction increased to 48%. The Cardiac Failure Team at Allegheny General wants to proceed with the Implantable Heart Defibrillator, however, they did ask dad what his thoughts were on this procedure and he agreed to have the implant. He has been having arrhythmias, although he does not feel anything. Dad's white blood cell count is up and the drs want to wait to schedule the procedure until they are sure he does not have any infections.

He had his staples removed from his incision. He is quite tired but he does need to catch up in that department. His appetite is slowly returning. As for his physical therapy, he has not really had much. We are not sure yet if he will be released to come home after the IHD or if he will be sent to a rehab. clinic for physical therapy.

May 8 2009

2009-05-08T11:45:00.003-04:00

Dad is in a regular room and is eating, drinking, talking (slower), moving arms/legs. Yesterday, my mom spoke with the Cardiologist and she asked my mom what was being done for my dad's heart...mom relayed the information regarding the defibrillator...the doctor is aware of the Amyloidosis but wants to treat his heart. She said maybe a defibrillator is not out of the question and would like her Cardiac Team to take a look at my dad and "follow" him. My mom was ecstatic. Mom's reason for being so excited is that this hospital is not affiliated with UPMC. Dad is a "new patient" to them.

Also, yesterday, mom let dad take a look at his incision. He got bummed out. He said he didn't realize how bad the fall was. The incision is from top of his forehead back to mid ear...forming a big backward letter "C". His rib still causes him some pain...from the prior fall.

He had 30 lbs of fluid drained. No wonder the poor guy fell...those legs full of fluid...him being weak from loss of muscle tone.

His blood pressure is ok. He bounces from the low 100's to the high 80's (top number). All EKG's show no changes from when he was admitted and his chest x-rays show no fluid in the lungs. His Troponin I level is now reading in the .2's while he was at 5.7 in Feb. 09. Neurologically, I am not sure. Have not gotten a full report from the Dr. However, I feel positive about this since he has motor skills and can communicate.

Praise Be To GOD

2009-05-06T07:39:00.002-04:00

My dad was removed off of the ventilator yesterday and is breathing on his own. He is delayed in his speech, but just a little. He knows everyone. He is very thirsty but cannot have anything as of yet. Dads reflexes are good. He squeezes hands upon command and can move his feet...regarding his feet and legs, they are back to normal size...we think that is why he fell, his legs were too full of fluid and heavy for him to motivate. Both eyes are open and he says he sees fine. We did explain to him that he was not in the hospital because of the Amyloidosis, but that he had fallen. It is hard to leave him, and he wants my mom to stay with him but he is in the NICU and they are very strict. He does not know about my brother's minor accident nor does he know about my grandfather. We do not want to upset him.

Unbelievable

2009-05-03T12:04:00.002-04:00

First, I am still in processing mode, so if I sound like babble, I apologize...Friday morning at 6am, my mom calls hysterically and says my dad fell at 1am and hit his head again. He got out of bed and did not wake her for help - he went into the kitchen and fell there. She took him to the local hospital again...all the way there he was awake and talking and was upset...in the ER the drs observed him and took CT scans and administered pain meds. He then started acting real odd, my mom thought it was from the pain meds, but told the dr anyway (Thank GOD) and he said no, it was not from the pain meds that he has a brain bleed and started to shout orders to my dad. My dad was prep'd for transportation to Allegheny General Hospital Trauma Center in Pittsburgh...he could not be flown via life flight helicopters due to the rainy weather...The drs there immediately observed and prep'd dad for surgery...he was almost brain dead... exact words from the dr. The surgery was a success, they got the bleeding to stop but he was still not "out of the woods"...the drs said that he could still have brain damage and that will take a while to detect but on a positive note, he is squeezing hands upon command, opening his eye for a brief second, and something I have not seen since October 2008, his feet were back to normal size. They have him on a constant Lasix drip that is removing some of his edema in his legs, which we (my mom, my husband, brother and I) believe aids in him falling. His legs felt like concrete prior to the fall. The drs have taken him off of the Coumadin. Dad keeps trying to remove the ventilator by gaging and pushing with his tongue so the nurses have to keep giving him a mild sedative to relax him. His hands are restrained. We are only to visit with him 4 times a day at a half hour each time. We hate leaving him!!!!

Last night, my mom, myself, husband, daughters, brother and his girlfriend went in to visit with my dad and left together to go home...in separate vehicles. My brother was involved in an accident and could not drive his truck home because it was leaking fluid...but he and his girlfriend did not require any medical treatment!!!!!!! Also, last night, my grandparents (mom's parents) stayed overnight at my mom's house...mom and gram went to bed and pap went to sleep on the couch, he likes to watch tv to fall asleep...pap also has mild dementia...mom was just starting to fall asleep and then heard noises like someone falling down...she got up to see if my pap fell off of the couch...she went into the livingroom and did not see him...yelled for him and went into the kitchen...he was not there...she turned on the basement light and there he was at the bottom of the steps...he had fallen down the steps...she ran down yelling to him and he was unresponsive...she called 911 and in the middle of talking with them, pap sat up on his own...he was taken by ambulance to Allegheny General Hospital and was seen by the same dr that preformed my dads surgery...pap has bleeding on the brain...his does not require surgery at this point...it is mild, but will be kept to be observed.

Unbelievable!!

Update

2009-04-26T16:28:00.002-04:00

Bill, Ris and I went to see dad yesterday, he had nice color in his face and he seemed to have a bit of energy. Bill has told my dad about a great sandwich he had from the local pizza shop, Osso's, that is close to the hospital and we decided to bring one in for dad. It is hot pepper, onion and ham, cheese and sauce toasted. Well, this was a case of "now you see it, now you don't". I was very glad to see dad eat and enjoy food.

His legs are still swollen but not as bad as before he went into the hospital this time. The nurses gave him different compression socks and they tremendously helped his swelling. He said they were comfortable as well - the other ones he had were knee high, these are up to the thigh and don't "cut" him.

Now, the important info...The Specialist came in today to see dad and said that he does not believe that an ICD would benefit my dad. He stated that the chemo should also help the arrhythmia since it is being caused by the amyloidosis. OK, now for my opinion---I do not want dad to have an unnecessary procedure and be put thru any type of recovery time, however, I don't completely agree with this doctors statement. The chemo will reduce or put the lambda light chains in remission, however, the Cardiologist in Boston said my dad's heart condition was severe with the ventricle thickness and enlargement, plus he recently had a mini stroke. These are compounding issues. I think I am just not comfortable with doctors who are not Specialists in the treatment of amyloidosis. On a bright note, dad was told that he would be released from the hospital today.

He decided to take a nap. Another doctor is due to come in to take a look at dad but this dr. will not be in until tomorrow and now his homecoming has been delayed. The poor guy doesn't know this yet, but when he wakes up and mom tells him, I know he will be very disappointed.

Test Results

2009-04-25T04:43:00.004-04:00

Dad is not at a hospital in Pittsburgh. My mom took him to a local hospital for the fall. She thought since he fell and he needed to have a CT scan that it would be fine for him to be seen at any hospital. She did not know how thorough they would be. She is quite happy with the way the staff is taking care of him.

First, the CT scan results were in; good but the Doctors wanted to be completely sure and had ordered a MRI. He has also been receiving light physical therapy...just walking up and down the halls with the PT. The doctors also wanted an ultrasound done to check for corroded arteries. They want to tackle the low blood pressure issue since this is the conclusion as to why he is falling so frequently.

The Cardiologist (my dad's first Cardiologist before the amyloidosis diagnosis) examined him and his results from UPMC and determined that dad should consider having an Implantable Cardiac Defibrillator for the arrhythmia and it may also adjust the low blood pressure. If dad wants to have the ICD they would like to do it this coming Monday.

The MRI revealed a small spot in his head (I do not know the exact location yet). The Drs said he suffered from a mini stroke recently. They asked my mom if she noticed any symptoms, however, after the previous fall, we thought he had a concussion but those symptoms may have been due to the mini stroke.

Dad is getting all this news in one day and of course is feeling down. Especially after hearing he had a mini stroke. He is still waiting for the results of the ultrasound.

Will update later

Another Loss of Balance

2009-04-22T11:07:00.003-04:00

Last night, dad fell again. He was getting up off of the couch and somehow, he fell backwards and hit the back of his head off the floor. Mom was in the other room - she told him when he needs to get up, to call her and she will help him, but he thought he could do it himself - she heard him fall and ran in the room where he was laying on his back. He said he doesn't remember falling. Mom did take him back to the hospital and they have kept him again overnight. CT scan was good and so were the x-rays.

We do not know what to think! Could these spells be from the amyloidosis itself; the medications he is on; his heart, kidneys, and/or his autonomic nervous system; the chemo still in his system...we are at a complete loss as to understanding what is going on. I feel helpless to both of my parents at this point.

Dad has an appointment with his hematologist/oncologist on Friday, and my mom has a bunch of questions for him, hopefully he can give answers.

Released from hospital

2009-04-19T13:58:00.001-04:00

Today, dad is being released from the hospital. The reason he was kept until today was because he was having arrhythmia and the doctors were concerned because they thought that was why my dad would faint. There was a discussion of implanting some devices, such as a pacemaker or defibrillator, or possibly medication instead to control the arrhythmia. However, when my dad was walking down the hallway, during physical therapy, he got lightheaded and the therapist took his blood pressure and it was low versus when he was exercising in bed, the blood pressure was in the 100's. The doctors now believe that the fainting episodes are due to the amyloidosis and not from the heart arrhythmia. Also, my dad had no other symptoms, he did not know that he was having the arrhythmia, this added to the doctors conclusion.

April 15 2009

2009-04-17T09:50:00.004-04:00

Mom called me around 5pm and told me that dad fell again. He hit his head pretty hard and did have a cut above the left eyebrow up to the top of his forehead. He blacked out. He said it is a "weird feeling" just before falling. Mom wanted to take him to the hospital to get his head checked especially since he is on Coumadin. He refused. Then at 11pm mom calls again crying saying that she is considering calling 911 to take dad to the hospital. He was having chest pain (left side) and his arm was numb. He was scared and so were we. I got there before the ambulance and he was just sitting on the edge of the bed looking very pale. He said the pain was awful. The EMT's took him to Presby. After the doctors got the results of the CT scan and chest x-rays, they came in to examine him and he was flinching when he was touched in the left part of his chest. The doctors said they feel that this was not a cardiac event but they want to keep him overnight for observation. His blood work came back good but they want to monitor him for at least 24 hours.

April 16

We went in to see dad at the hospital - he was receiving Heperin via IV and he has edema in his knees, thighs, abdomen, arms, and face. The nurse was not concerned. The doctor told him that he would probably coming home tomorrow. Dad is hoping to be released before 7 pm so he can watch the Penguin game at home.

April 17 9:15 am

Talked to mom to see what time dad was coming home and she said not today. This morning the doctors checked the chest x-rays and he does have a cracked rib and he was having irregular heart beats. Now, the doctors are in a consultation regarding his "case". So, he will be having more tests today.

As part of the amyloidosis support group, I "met" a woman ( I think I connected to Heather because our dads are close in age ...hers 64, mine 62...and she and I are also)... whose dad has also been diagnosed with amyloidosis recently -Heather and her sister Allie - I received devastating news via email yesterday, their dad was in the hospital due to cardiac arrest and was on a ventilator. Today, they have to make the most heart wrenching decision. My deepest sympathy goes out to Heather and her family.

Easter

2009-04-13T08:39:00.003-04:00

We had our family Easter dinner at my grandmothers (moms mom) and my dad was there. He seemed fine and looked good in the beginning but later on, he looked tired and worn out. His voice is somewhat hoarse and he couldn't join in and talk as much. His legs are still swollen but he is still wearing the compression socks. The Lasix was increased but he is still hanging on to some of the edema yet. He does have an appointment with the Hematologist Friday and I am going to go with him, I have a few questions for the Dr.

His appetite is still good, and his portion size is starting to increase a little bit.

Bill and I were talking on the way home from dinner and it is difficult to see my dad's condition; not only does he have to fight this awful amyloidosis, but he has to fight the symptoms: edema, tiredness, weakness, heart condition, healing from hip replacement. Jeez he has a lot to bear on those weakened shoulders.

Feeling Great

2009-04-05T08:50:00.002-04:00

Dad seems to have gotten thru this round of chemo wonderfully. He said he "feels great". He has gotten some of his appetite back and is starting to eat more.

His nurse faxed me his most current labs and I got freaked out a bit. His Free Kappa Serum result increased to 31.0, his Free Lambda Serum result increased to 20.0, and his Free Kappa Lambda Ratio also increased to 1.55 (results from 3-20-09). When we were in Boston his FKS: 7.9, FLS 13.1, & FKLR was .6 (Feb. 2009). So I contacted Boston and they said that he is still in the good range. I am still concerned a bit, but relieved all the same, since Boston took a look.

Dad's feet still remain swollen but he gets around well.

SUNday

2009-03-29T22:13:00.004-04:00

On Friday, I got a call from dad and he said "Guess what I did today!". I had no idea - he said that he rode the quad. He was happy to be able to ride, which was not far but he rode in the yard and to get the mail. My brother was over dad's and decided to get dad out of the house. They started up dad's truck and took a little ride then started the quad and dad "took off".

Dad's feet have been swollen but he has lost the swelling in the knees. Most of the swelling starts below the knee and all the way down. His voice is back to normal and all his vitals are good.

Dad had a visit from his nephew and his wife this morning. That was good for him. There wasn't a lot of talk about the amyloid - just their normal stuff like hunting and fishing and boats, etc...

I'm getting anxious for dad to be in "remission" or RID of the amyloid light chains and get some meat back on his bones. I don't like to see him so thin and frail. That is not my dad.

He has tolerated being off of the chemo much better, so far, this time. Let's hope this continues for another week and we will know he is "out of the woods".

P.S. Dad's light chains are now down to 20!!!

End of Treatment for this Round

2009-03-25T08:21:00.003-04:00

Well, dad's feet up to the top of his knees are swollen again. He has increased his Lasix to 80 mg in the morning and 40 mg at night, while on chemo this time (per his Hematologist). This regime did not seem to work wonders. Other than this edema, he says he feels fine. Today will be his first day without chemo treatment. We will have to monitor him because he has a hard time when he finishes treatment. He also has had hoarseness during this treatment.

Hopefully this will be his last treatment. He will get his results of his light chains sometime in early to mid April. Last time he was at 23. If this course was the last he has to take, he will still have to test monthly to make sure the light chains do not spike. We are keeping everything "crossed" and praying that this is the last one and he is in remission.

4th Round of Chemo

2009-03-21T23:30:00.003-04:00

Dad started his 4th round today. His light chains are down to 23!!!!

He still gets dizzy, even though he is taking Midodrine. He is still swelling in his legs, so the Hematologist wants to increase his Lasix a bit since dad will be taking the chemo treatments again, however the Hema wants to talk to the Cardiologist first. Dad's voice still gets "froggy". The doctors tell him that these symptoms are from the chemo, but I am hesitant to believe this. Being that dad's light chains are considerably down, he still is producing the amyloid, so are the symptoms really from the chemo or the amyloid? This is why I wish we had doctors of the same caliber as Boston's Amyloidosis center.

Shannon was talking to my dad on the phone the other day and he was telling her that he ate a portion of a steak. He was real happy to be able to eat and not be sick. I think that this makes him feel like he is getting back to his "old" self again.

**Marisa got her acceptance letter from Washington & Jefferson College on Friday!!!!! We are soooo proud of her! She is very excited.

Good News

2009-03-13T12:34:00.004-04:00

I've been writing mostly about the bad news so I decided to write about the good news - dad feels much better lately. He looks better too. This may have a smidge to do with him shaving off the goatee. He says he has his appetite back but he still does not eat much. His dizziness is better - he is on the Midodrine. The Coumadin had to be backed off but this is being monitored.

While I was reading through the Amyloidosis Support Blog, there has been some interesting info going 'round of late having to do with a chemical leak at Toms River, NJ. This has had a lot of speculation in regard to Amyloid and chemicals. Could the environment have peaked the Amyloidosis in some of the patients? There are some people who have worked with chemicals in plants, factories, farms, etc... My dad has worked around chemicals all his life. He was a farmer as a teen, worked as a diesel mechanic for years, then at a gas station, then at a crude oil company maintaining oil wells...hummm

March 6

2009-03-08T22:22:00.002-04:00

Home from the hospital!!! The doctors at the hospital wanted to make sure dad's blood pressure was stable before they released him, and it was satisfactory. However, he did have to come home with the catheter/bag. He will be seeing an Urologist this coming week to have it removed and to have his prostrate checked.

My mom and I got all the meds together and made a list of what he is taking and the dosage, so when he has dr appointments, he can hand the list to the dr. Dad gets confused and this will be a lot easier for him.

He has a visiting nurse coming to the house once a week to take his blood - because of the Coumadin. I'm relieved that the nurse goes to the house. I don't think it would be wise for my dad to drive yet. He is still too weak.

Can't wait until we get the results of his light chains from this past dose of chemo. Melphalan is working wonderfully for decreasing the light chains, but has a terrible effect on dad after the treatment.

March 5

2009-03-05T08:05:00.004-05:00

Mom talked with the cardiologist yesterday and he said that dad's heart is strong. The blood clot is up high in the right atrium, however he doesn't feel it will be a problem but did caution that there is also a chance the clot could break loose and travel. The dr feels that the Coumadin will definitely help.

The Lasix medication will be started again but with caution. Dad's low blood pressure is attributed to the Lasix, so he will have to monitor himself closely for edema.

In the future, dad may be a candidate for a heart transplant. First, the amyloidosis will have to be taken care of.

Dad is becoming malnutritioned and has to make himself eat. He needs the protein! Dad thinks that his dentures are a factor in the gag reflex, so we told him to take them out when he eats. He will be able to go home this weekend but he has to eat better.

He also had to be cathetered again (can't relieve himself).

One of the best things that happened yesterday, is that dad felt great! He said yesterday was one of the best days he had since being in the hospital.

Shan is on his mind. He called her early this morning to wish her a Happy Birthday. He doesn't know, but we will be making a surprise visit to him today so he can see her on her Birthday!!!

Another Catheterization

2009-03-03T09:02:00.003-05:00

Got the results from the MRI - he has a blood clot in the right atrium. Today, dad will have a heart catheterization. The dr's said they want to look at the heart to see if this is why he has low blood pressure.?

Continued Hospital Stay

2009-03-02T10:49:00.005-05:00

Before I left on Wed, I stopped at the nurses station and asked for some of dads blood test results. His BNP was 2778; Troponin I was 5.42 they did not test for Fibrinogen nor D-Dimer.

On Friday, the doctors said that dad's blood pressure is too low and that the Transesop echo would not be able to be performed. A MRI will have to be done instead, however, the testing results are comparable.

Dad started having some chest pain and a nasty cough. Mom was sick the week before with a viral infection which caused her to cough and have chest congestion, but was told by her family doctor that she would be of no harm to my dad. Don't know if that was true but now dad seems to be having the same symptoms as mom had.

His blood pressure was in the 70's so he was put on dobutamine. He seemed to handle it well as of Saturday night.

Dad is not eating well. He says he has no appetite. We (Bill and I) thought that maybe he just didn't want the hospital food and we know he loves spaghetti, so we brought him in spaghetti with a meatball. Unfortunately, I pushed the meatball (knowing dads appetite before amyloid) he took a bite but then gagged. He couldn't eat. I felt terrible for him. He has always been a BIG eater.

Sunday, dad had to have the dobutamine removed and dopamine was the replacement. He started having palputations. Also, dad said that when he tries to urinate, it burns and then he couldn't go, but he felt like he had to. Also, he still hasn't been eating. He took 2 bites of pudding and ice cream for breakfast and couldn't eat anything else. For dinner, he ate some soup and pudding. He says he cannot eat because he has no appetite and when he has to chew, he gags as he tries to swallow. I am not a doctor, but I think this is from the amyloidosis. I was reading about difficulties in swallowing with this disease and I think this is what he is experiencing.

Dopamine seems to be working well - he has been able to relieve himself and has no burning sensations. The dr said it was unlikely that it was from the dobutamine. All urinalysis' came back good and he did not have to go on antibiodoics. His Creatintine is .6 and Protein was 300 (not sure how this is measured)

Today, waiting for dad to receive his MRI.

UPMC Presby.

2009-02-27T19:18:00.003-05:00

Dad has been in the hospital since Wednesday night. He started to get edema in his feet up to his upper abdomen, dizziness (couldn't stand up), shortness of breath, headache, & stomach pain. The dr's of course did blood work, chest x-ray, echocardiogram, and a CT scan with contrast. All tests except CT scan came back good but the dr's saw something in the CT scan that they are questioning and wanted to schedule a Transesopogus echocardiogram, however, his blood pressure has been too low and enabled the dr's to do the test. Now, dad has to stay in the hospital over the weekend and hopefully have the test on Monday. The test "looks" for blood clots and if one is found, the dr said he would prescribe Coumadin. THAT IS WHAT BOSTON WANTED HIM ON IN THE FIRST PLACE!!!! To prevent clots. Although, we do have to wait until the test results come back on Monday.

Tiresome

2009-02-23T21:42:00.004-05:00

Well, my dad started his 3rd round of chemo this past Saturday. He had an appointment with the oncologist on Friday and he said that my dad's blood work came back good and to go ahead and start this round of chemo. I asked my mother to get copies of my dad's blood work from the lab so we can compare with the results from Boston.

I am still very frustrated that the oncologist and cardiologist do not want to put my dad on a blood thinner. They continually say that it is not necessary. I believe Boston and what they recommend, but I feel as if my hands are tied. Both of my parents have accepted what the local doctors are saying so there is no "fight" to get my dad on the preventative medicine...blood thinner...However, I do have to give the local doctors the benefit of doubt because they did not receive the full text from Boston as of yet. So, they were just going on my mom's word as to what Boston said. These dr's should have the reports this week...then we will see

Dad said he felt very tired today. Like he was "beat up". Poor guy! That is his biggest complaint lately. He always feels very tired and now with the chemo again, it is a little worse. He didn't sleep on Saturday night. He said he couldn't get comfortable and wasn't sleepy. He did say on Sunday that he felt a "funny" feeling in his stomach then it radiates thru his chest. He thinks it may be the chemo working? I hope that is what it is.

Frustration

2009-02-16T09:52:00.006-05:00

Dad's blood tests show his BNP at 3520 and the norm is 0-53.0 PG/ML; TROPONIN I 5.792 with the norm being less than 5 NG/ML; D-DIMER greater than 0.5 but less than 1.0 with the norm being 0-0.5 MCG/ML (FEU); FIBRINOGEN greater than 500 with the norm being 200-400 MG/DL. In Boston, the Doctors there said that my dad should take Coumadin since he has heart damage and is at risk of clotting.

Mom spoke with dad's cardiologist and he said that it is not necessary for my dad to be on Coumadin. I faxed the first page of the report that we received of my dad's labs in Boston to the cardiologist and the response was still the same (doesn't feel it is necessary).

Then my mom called the oncologist and spoke with his nurse and explained to my mom that both the cardiologist and oncologist have been testing my dad's blood and neither doctor feels it necessary to put my dad on Coumadin. The nurse said that if they put my dad on it, he would have to test weekly to make sure the dose is correct and etc... and why would my mom want to put him through that if they did not feel it was necessary.

HELLO - my dad is at risk of clotting. I think that testing and adjusting meds is much better than having a stroke - call me crazy!!! I know there is a lot of good/bad info regarding Coumadin but if it is properly maintained, it works.

So, my mom and dad both are satisfied with what the doctors say here. I am out numbered.

Follow-up Call from Boston

2009-02-10T14:31:00.002-05:00

My mom got the follow-up phone call from Dr. O'Connell on Friday, Feb. 6, 2009. Dr. O'Connell said the conclusion that she and her colleagues came up with is; my dad should complete 2 more rounds of chemo and then stop. He will have to continue to test, to make sure the amyloid light chains are down. If they light chains spike, he will have to start the chemo again.

Also, another recommendation is for my dad to take a blood thinner. This recommendation will be passed on to my dad's cardiologist.

My mom is trying to hang on to anything positive and keeps asking the doctors the same questions, but in a slightly differ way. She wants reassurance that my dad will be ok and survive. Dr. O'Connell told her that my dad is a very sick man. Mom did not want to hear this. Actually, none of us want to hear this, but I like to be proactive. We now know where this disease is and what is affected. Now, we have to help my dad adhere to the sodium restrictions and keep his spirits up, plus follow up with his doctors here in Pittsburgh.

2009-02-05T11:38:00.003-05:00

BOSTON MEDICAL CENTER APPOINTMENT

Mom, Dad, and I left for Boston on Feb. 1, 2009 at 3 pm (Super Bowl Sunday - GO STEELERS!). His first appointment at the Boston Medical Center was Feb. 2, 2009 @ 8:30 am. He had to register on the first floor of the Moakley Building then proceed up to the third floor to the Multispeciality Clinic. There he "signed in" and was handed a folder and a large plastic bag. In the folder, he had a schedule, questionnaires, and directions. In the plastic bag was a large urine container for his 24 hour collection along with a slide for stool samples. He was told to start using the urine container then and return it to the lab when he completed the 24 hr. cycle. Dad also was told by the front desk receptionist to follow his schedule stapled to the folder. (You are somewhat on your own)

Feb. 2, 2009

His 8:30 was for Blood & Vitals: The blood was drawn in the lab one door down from the Multispecialty Clinic (clearly labeled) then he had to return to the Multispecialty Clinic (MSC) for his vitals. Then return to the waiting room in the MSC for his next appointment.

The Echocardiogram was scheduled for 9 am in the MSC. My mom and I were able to attend this appointment also. This test was very thorough. There were over 100 different "photos" taken and at various angles. I thought that this was fantastic. I actually never had witnessed so many photos taken. Needless to say, I was impressed. Once this test was complete, we again had to go into the waiting room.

Next, we had an appointment with Dr. Rosemary O'Connell, Clinical Instructor in Medicine, at 10:30. Dr. O'Connell went over my dad's medical history thoroughly and examined him. This was a very pleasant visit. Dr. O'Connell was very interested in what you had to say and did not make any questions you had seem silly or unimportant. She was honest and (in my opinion) caring. Back to the waiting room!

Dad's next appointment was for a chest x-ray in Radiology at 11:30 am. This is was in the same building - only being that they are attached, but you did have to leave the 3rd floor of the Moakley and go outside to the left to the Menino Building. Once in the Menino building, report to Radiology. And this is just like any other "hospital" type setting. Sign in and wait then you are called back to get testing done. Then back off to the Moakley Building MSC.

The next appointment was with Dr. Vaishali Sanchorawala, Assoc. Professor of Medicine Clinical Director, Autologous Stem Cell Transplant Program Section of Hematology/Oncology Boston University School of Medicine Boston Medical Center, at 12:15 pm. Again, another very caring Doctor. She was extremely informative and thorough. She discussed the Amyloid disease in aspect of my dads results from his records that were sent up to Boston from Pittsburgh. Dad's free light chains have gone drastically down and she was pleased with the course of treatment he was on at this time, since he has responded so well. And again, no question was "silly".

We got a break from the waiting room and went directly to see Janis. She went over the forms and questionnaires that were included in the folder. The forms were for consent to have Boston Medical Center keep your tests and results (records) in their data bank for further research in fighting this disease. I am proud to say, dad did consent.

Lastly, the appointment at 2 pm was canceled for his Bone Marrow Biopsy, by Dr. Sanchorawala since he just had this test done in Pittsburgh a little over a month ago. Dad was VERY relieved!!!!

Now, he was free for the rest of the day.

Dad was tired and had some minor swelling in his feet and ankles.

Feb. 3, 2009

Dad completed his Lab samples and took them back to the Lab before his first appointment of the day at 11:30 for PFT's (Pulmonary Function Test). This test is done at the East Newton Atrium. This building is not attached to the Moakley/Menino building. An inner campus shuttle can be taken to the building but on a nice day, it is within walking distance. Again, he had to be sent to a registration office and then to the actual appointment for his test. During this test, he had to do a lot of breathing which was measured through tubes that he had to blow thru. These machines were very sensitive. He had to repeat them a couple of times because he took an extra breath when he should not have. Also, he had to have an Arterial Blood Gas test done and some exercise which consisted of walking up and down the hallway.

His next appointment was at 2:30 pm, MSC Moakley Building, with Dr. Hans Meier-Ewert, Section of Cardiovascular Medicine Boston Medical Center Assistant Professor of Medicine Boston University School of Medicine. This appointment was not what we expected. We knew dad had some heart damage, but were told in Pittsburgh that his heart was strong. The results that Dr. Meier-Ewert reviewed were not real promising. He said dad had 1.2 and 1.6 readings in his upper chambers of his heart, which relates to severe heart damage, done by amyloidosis. He has stiffness in the upper 2 chambers and interferes with the pumping of blood. Also, his pumping chambers are enlarged. Dad was told to maintain a 2000mg maximum sodium consumption daily. This will help the lasix to work better in regard to dads fluid retention. Also, the Dr. said that he would like my dad to take a blood thinner to help prevent any clotting in the heart. I asked the Doctor how severe this is on a scale of 1-5 (5 being worst) he said he would have to say dad was a 4. Not what any of us wanted to hear. Also, he said (the same as my dad's heart Dr. in Pittsburgh) that my dad is not a candidate for Stem Cell Transplantation, because of the severity of dad's heart. The Dr. is concerned that dad would may not make it thru the procedure.

That was dad's last appointment for the day.

Feb. 4, 2009

Dad's first appointment was with Dr. Adam Segal, Assistant Professor of Medicine Renal Section Boston Medical Center Boston University School of Medicine, at 8 am - MSC. Dr. Segal said that my dad's kidneys were working properly, but that they were definitely affected by the amyloidosis. In his description of the kidneys, they have 2 parts and one part is fine but in my dad's case, the 2nd part which is called Tubules, is the area where the disease progressed. Dad's urine protein dump is elevated (3.6g). Dr. Segal also believes that the kidneys along with the heart, are "to blame" for my dad's edema. On a positive note, the kidneys can reverse. We were instructed to return to the waiting room for dad's next appointment, while dad and Dr. Segal talked about hunting.

This appointment was scheduled for 9:30 am but was delayed until 10:30 am, with Dr. O'Connell again. She went over some of the test results that were back from the labs there. She reiterated that my dad's heart was severely involved: His BNP reads 3520 (very high) and his Troponin I is 5.792 (also high). Dr. O'Connell said it is very important for my dad to adhere to the sodium restriction. His liver showed a slightly elevated level for iron and she suggested taking a multivitamin. Another important reading is his Lambda Light Chain which is 13.1 and his Kappa Light Chain is 7.9 Kappa/Lambda Ratio is 0.60 HURRAY!!!! GOOD NEWS!!! Also, his blood counts are good. There are more tests results that are pending and Dr. O'Connell will let my parents know the results by Friday. I had asked about dad's GI Tract, we know that this is involved, but did not hear about any tests for this area. She said that there really are no tests to let us (including the Dr's) know about the progression of amyloid in the GI Tract, however, we do know it is involved because of the biopsy my dad did have in Pittsburgh. Dr. O'Connell said on Thursday (2/5/09) all the Doctors that my dad met with will consult together (like a round table) and come up with the best way to treat the amyloidosis. Then on Friday (2/6/09) Dr. O'Connell will telephone my mom with the recommendations and test results which were pending.

We left Boston at 4:15 pm.

2009-01-26T12:17:00.005-05:00

My dad (61) had to have a total hip replacement in October 2008, because of arthritis pain. During one of his home visits with the physical therapist, he had massive swelling in his feet, legs, groin, up to his abdomen. She instructed him to go to the hospital, she thought he was having kidney trouble.

I took him to the ER and he was diagnosed with Congenital Heart Failure. He was admitted to the hospital and his heart doctor visited him. After a few tests were run, his doctor said that he believed that he had amyloidosis. We never heard of this before. The doctor said that it is a blood disorder and that it attacks organs. My dad had good EKG readings, however there was some stiffness in his heart. The doctor described how the heart contracts and pumps the blood and that the stiffness my dad has is hampering the pumping of the blood. The doctor said that he has not seen amyloid for a few years and he would like my dad to follow up with a cardiac doctor located in UPMC Shadyside.

My dad did follow up with the referral to the UPMC cardiac doctor and was had a battery of tests done, one of which was a heart catheter with biopsy. The biopsy did come back positive for amyloid with 1.2 thickness. This doctor referred him to the Hillman Center, a cancer hospital.

Amyloid is not a cancer but is treated similarly to Multiple Myeloma which is a cancer. There is no cure for Amyloidosis. It is a blood disorder where there is too much protein produced which leads to deposits/damage to organs.

At the Hillman Ctr. my dad met with a Hematologist and ordered bone marrow screening and fat pad testing. My dad's test results came back with the diagnosis of AL Primary Amyloidosis. He has heart, kidney (creatine was more than 2), esophagus, colon, & gut involvement.

His course of treatment is chemo. Melphalan and high dose Dexamethasone. The doctors were concerned with the heart involvement and multiple organs affected, to do a stem cell transplant.

December 20, 2008 he started this "cocktail".

He had to be seen at the hospital for losing a lot of weight, had no appetite, was very weak, insomnia, swelling, gagging, mouth sores, voice hoarseness, and minor tongue swelling. The Dr's said that this was a reaction to the chemo but the weight loss was from his diuretics. He needed to adjust them. He started dehydrating. For the sleeping issue, they have him taking Oxycodoine, Benedryl, and Ambien.

He cannot handle the Ambien.

To date, he has had more swelling and was told again to adjust the diuretics. He has a better appetite. He was just retested and got good news - his light chains went from 580 to 78!!!!! His Dr is concerned about his kidneys though. One of his tests came back a little high and he is now to see a kidney specialist.

My parents and I are going to Boston University in early Feb. to have their doctors evaluate my dad. Boston Univ. is a center of excellence for Amyloidosis.