Terri's Medical and Family Fund

My name is Tina and I am launching this campaign on behalf of my very good friend Terri Smith.

We are raising money to help cover the vast cost of Terri's Smith medical treatment, and for the ongoing support of her and her family.

I am extreemly lucky to have Terri as a friend, and I want to thank each of you in advance for any donation you may make to help Terri and her family.

November 2015 when Terri shared her story with me.

This is an overview of what has been happening to Terri beginning in Oct '15.  See below summary Terri's story in her own words.

•Oct 2015: Diagnosed Thyroid Cancer

•Nov : Surgery Thyroidectomy
& Amyloidosis detected/found

•Dec : Radioactive Iodine Treatment

•Dec : Diagnosed, Unexplained Congestive Heart Failure & signs of amyloid cardiac involvement

•Jan 2016: Multiple biopsies performed typing the Amyloidosis

•Feb : Diagnosed with AA Amyloidosis & Diagnosed with Cardiac Amyloidosis diastolic left ventricle congestive heart failure

•March: Pet-Scan detected inflamed lymph nodes & mass in abdomen

•April: Evaluated at UCLA for a heart transplant and biopsy mass found in abdomen.

•May: Surgical consultation to remove mass & Surgery at UCLA Ronald Reagan Hospital will read below, her condition is very rare, and the treatment is very expensive. May 17th, checked into UCLA to remove the mass in her abdomen. May 25th Surgery is scheduled at 1pm PST.

We are very possitive this procedure will be successfully and will alllow Terri to go back on the heart transplant list.


Thank you, and now, here is Terri's story in her own words:

In October of 2015, I was diagnosed with Malignant Papillary Carcinoma a form of Thyroid Cancer.

Of course when one hear the words, "you have cancer" there's an immediate fear that goes through your mind, and when you're a mother, the first thought is your child.

My Doctor informed me at the time of my diagnosis, that this type of cancer was 95% curable which gave me and my family peace of mind I would be ok.

Terri, son Dylan, husband Darren at UCLA (April 2016)

In November, I had a full Thyroidectomy, and in December I had Radioactive Iodine Therapy, to insure any rogue cancerous cells and residual thyroid tissue would be ablated.

After my thyroid was removed, it was sent to a Pathologist for study to make sure the cancerous nodule was encapsulated and no cancer cells had spread outside of the organ.

A week after my surgery I received a call from my Endocrinologist, telling me that the Pathologist report came back with a finding of, "Amyloidosis" in the parathyroid tissue, that was removed with along with my thyroid.

This was the first time I had ever heard of the word, "Amyloidosis" the only thing my Endocrinologist could tell me was; it was very rare, and I would need to see my Hematologist immediately.

I went to see my Hematologist, he had received the Pathology report as well, and wanted me to come in immediately for some blood tests.

My Hematologist explained to me, that Amyloidosis is a disease in which the body starts to produce these abnormal proteins that forms fibrils which misfolds into major organs of the body causing complete organ failure.

He went on to explain to me, there are different "types" of Amyloidosis and the first thing we needed to do, was to figure out what type it was in order to treat it.

How do we treat it? Is there a cure?

Terri's childhood friends visited Terri to celebrate life and their birthdays and friendship. (April 2016)

Amyloidosis is not curable, but depending on the type, there is chemotherapy and stem cell transplantation, and some clinical trials available. Unfortunately, most other types are treated to help support and maintain organ function of the affected organs, until the organ or organs transplants can be performed to help prolong life.

After our appointment, and still healing from my Thyroidectomy surgery, I was left feeling completely overwhelmed and confused. I just went from hearing I have a cancer that is 95% curable, had a surgery to remove a major organ, and getting ready to have the radioactive iodine therapy, to now facing this rare incurable disease that can cause organ failure and death.

During our discussion, I also learned that most doctors have never heard of Amyloidosis, because it's so rare and is often just missed, or misdiagnosed as something else.  Amyloidosis can only be diagnosed through very specialized testing.

The holidays were in full swing at this point, I still needed to have the radioactive iodine therapy, and then after the new year, start the process of typing and treating the Amyloidosis.

It was late December, I had spent a week going through the radioactive iodine therapy, and was back home for only 24hrs, when I decided to go downstairs to turn off our Christmas lights. When I walked back up my stairs, I couldn't catch my breath. I told my husband, "I don't feel right" suddenly I felt nauseous and fainted. When I woke up, my son was next to me holding my hand asking me, "Are you ok mom?" I felt like a thousand pound weight was on my chest, and I was having a heart attack.

I passed out again, this time waking up to seven paramedics in my room helping me.

Terri, Dylan and Darren (2013)

I was taken to Saddleback Hospital, and later found out I was in unexplained Congestive Heart Failure. I spent three days there.

Before leaving, I had a echocardiogram performed. Because of the Amyloidosis finding in my parathyroid, the Cardiologist wanted to see if there were any possible signs of amyloid in the heart, there was. The echocardiogram showed thickening of the left ventricle, which compromises the ability of the left ventricle to relax or flex and fill with blood. Essential the heart becomes stiff, and losing the ability to function.

I was discharged from the hospital on the evening of December 23, 2015. The next day my husband and I put my son on a plane to go spent Christmas break with his grandmother and family in Arizona, since I was unable and too weak to travel at that time.

The first week of January 2016, I received a call from my Hematologist. He told me he wanted to refer me to an Hemopoietic Amyloidosis Specialist at the City Of Hope, a research hospital that treats terminally ill patients and rare diseases.

My Hematologist had only treated two patients with the disease before and one was in his late eighties, and the other was eventually referred to Boston University, the leading research school for Amyloidosis in the US, for a stem cell transplant.

8th grade gradation ( June 2015)

There are only three specialist in California, that treat Amyloidosis. After being referred by my Hematologist, I was accepted as a patient immediately.

My journey was now taking me to the City Of Hope to meet Dr. Michael Rosenzweig to learn more about this disease, type it, and treat it.

Upon my first visit with Dr. Rosenzweig, I was explained in detail what and how Amyloidosis works on the bodies systems, a history of the disease, and the typing process which is performed by a biopsy or multiple biopsies if needed, like in my case.

I went through a fat-pad, and bone marrow biopsy first, but the findings were clear. My doctor decided to have my thyroid and parathyroid sent to the Mayo clinic in Rochester Minnesota to retest and type the Amyloidosis originally found. The result came back as Secondary or AA Amyloidosis.

While in the process of typing my Amyloidosis, Dr. Rosenzweig referred me to a Cardiologist, Dr. Venkaterman, at the City Of Hope to work on my case concerning the congestive heart failure. After lab tests, X-rays, and another echocardiogram, it was decided to perform a cardiac biopsy of the heart tissue to test for amyloid.

Terri dancing at Sway Ballroom Dance (October 2015)

In February, I went to Good Samaritan Hospital in Los Angeles and had a cardiac catheterization to test for amyloid and pressure in the heart.

The report came back positive for Cardiac Amyloidosis left ventricular diastolic congestive heart failure.  AA Amyloidosis usually affects the kidneys, spleen, liver,  esophagus, stomach, gastrointestinal tract, and heart.

I was informed the heart, is the most difficult to treat and most vulnerable organ if affected. It limits the options for treatments, and clinical trials, simply because it's too risky. The only treatment is through prescription diuretics to control fluid buildup, and pressure in the heart.

At this point, Amyloidosis was found in my parathyroid, heart, and typed as AA Amyloidosis, and I was in congestive heart failure. (view link to learn more about Amyloidosis).

https://youtu.be/T-kXrEMoAa4

By March, I was told the type of Amyloidosis I have is caused by a chronic inflammation or inflammatory disease in the body, and by treating the inflammation, the body could go into remission and slow down or possibly stop the amyloid from infiltrating anymore organs.

City of Hope (January 2016)

Dr. Rosenzweig now referred me to a Rheumatologist, Dr. Raja at the City Of Hope to be part of my team.  I was tested for every inflammatory disease, I had none of them. Dr. Rosenzweig decided to schedule a pet-scan.

At this point two things were happening, I had been to see the Rheumatologist, and I had been told that there are no treatments that could remove the amyloid from my heart, and I would eventually need a heart transplant.

I was referred to UCLA to see Cardiologist Dr. Martin Cadeiras, to be evaluated as a candidate for the cardiac transplant list.  After reading my medical history, and a physical exam, he approved me immediately.

The last week of March, two weeks after seeing Dr. Cadeiras, I received a call from the UCLA cardiac transplant coordinator to arrange for me to be admitted to UCLA Ronald Reagan hospital for 3-4 days, on April 4th to be evaluated, for the heart transplant list.

Three days before being admitted to UCLA, I received the results of my pet-scan. Dr. Rosenzweig informed there was a mass inside my abdomen and inflamed lymph nodes in the area, and wanted to schedule a biopsy immediately after my heart transplant evaluation.

I was admitted to UCLA on April 4th, and brought a copy of the pet-scan for the head of the cardiac transplant team.

Terri at UCLA (April 2016)

He wanted their Radiologist to read the pet-scan too. I had spent three days being examined and going through test, when the doctor informed we had to stop the evaluation and biopsy the mass.

I had the biopsy the following day, and 24hrs later a preliminary report came back that the pathologist felt it looked like a plasmacytoma: tumor of plasma cells, but could not say if it was cancerous or not.

I was almost through the entire evaluation, but after seven days, I had to be discharged until the full pathology report came back and the mass could be treated. I was no longer a candidate for the cardiac transplant list because of the mass.

I was exhausted feeling deflated, in physical pain and uncertain about my future. Most of all, I felt helpless knowing this would cause my son, husband, and mother more sadness and stress worrying about me.

After I was discharged from the hospital, I spent a week in bed recovering from all test, and then I went back to City Of Hope to see Dr. Rosenzweig. He had more information regarding my pathology report, but said enough tissue was not removed from the biopsy to be able to say for sure it was not cancer. However, he didn't feel like it was based on the proliferation of the type of cells found.

He said the mass was a plasmacytosis, and would need to be completely removed to be biopsied again to rule out cancer. Moreover, Dr. Rosenzweig felt this could most likely be the source of the hidden inflammation that is causing my liver to make the serum AA Amyloidosis that has infiltrated my heart, and affected my kidneys and liver.

Terri and son Dylan at Hoag Hospital (October 2015)

Two weeks later, first week of May, I went back to City Of Hope for a CT Scan and to meet my surgeon and my cardiologist for a surgical consultation. Dr. Melstrom (surgeon) walked me through the procedure and told me she was very confident the mass could be entirely removed. But, the surgery would be considered "high risk" because of the congestive heart failure, and felt it would be safer for me as a patient, to have the surgery performed at a hospital, like UCLA, which is a cardiac care and transplant hospital for possible postoperative complications.

Since City Of Hope is a bone marrow and stem cell transplant and rare disease research hospital, there is a real concern that I would have to be transported after the surgery to UCLA, which would further put me at risk.

Today, I'm faced with the decision of not having the surgery and letting the amyloid invade my heart, kidneys, liver, and other major organs or go through the surgery with the risk of possible heart failure, or other post surgical complications.

Because there is no cure for Amyloidosis, and my rapid declining health. Unfortunately, because there is no cure for Amyloidosis, I will be having the surgery at UCLA and be admitted on May17th this month.

I'm scared but more terrified of not having it, and letting the amyloid slowly steal my life and my families joy. They have suffered as much as I have, it has been extremely difficult for all of us.
 
Physically, I struggle with shortness of breath, heaviness in my chest, I sleep at a 45 degree angle, swelling in my legs and abdomen, arrhythmia, chronic dry mouth and skin, lightheadedness, digestive problems, left vocal cord paralysis, brain fog, and peripheral neuropathy.

Last year, I was a healthy happy mother, cheering my son Dylan and his teammates on at his Laguna Beach High School freshman football games, and excited for his first year of high school. Working in a job that I loved for the last ten years as a Massage Therapist. I was taking ballroom dancing and drum lessons, paddle boarding, and enjoying beach parties. 

Tuesday May 17th I am going back into the hospital and hopefully the mass taken out in my abdomin will be successfull and indicated as the source of the inflamation that has attacked my heart.

I will provide updates. I'm very fortunate and thankful for the loving support of my husband, son, family, friends and all of you that are learning about my battle and fight for love and life.

<iframe media_type="0" media_id="GPVGFoISOeA" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/GPVGFoISOeA/?rel=0" frameborder="0" allowfullscreen="1"></iframe>Terri Smith Sway Ballroom Dancing (October 2015)

Thank you for listening to my story and the love and prayers for me and my family.

Terri Smith