| Reader Views is happy to have with us Deborah | | | | fact that Clyde wouldn't recover. I knew that as |
| Slappey Pitts. Deborah's writings of short stories, | | | | long as Clyde was alive, there was hope. My hope |
| essay, and poetry span some 35 years. Welcome! | | | | and prayer was that if it was God's will to cure |
| Irene: Your book "I Feel Okay" is about searching | | | | Clyde, he would, and that's why we kept looking |
| for a cure a disease that not many people have | | | | for someone to help Clyde, beginning in Columbus, |
| heard of. Please tell us about the disease. | | | | Georgia and ending in Rochester, Minnesota. And |
| Deborah: Primary amyloidosis (AL) is a rare | | | | thanks be to God, we made it to The Mayo Clinic, |
| disease of the immune system that affects | | | | Clyde's place of hope. |
| roughly eight people of a million annually. The | | | | Clyde and the family didn't dwell on the negative; |
| disease is not cancer, but the effects on the | | | | we accentuated the positive and we took Clyde's |
| major organs of the body can be just as deadly | | | | illness one day at a time, traveling around the |
| as cancer. Amyloidosis is an abnormal protein that | | | | country to embrace a cure for the disease. Our |
| is deposited into any of the body's tissues or | | | | trust and faith was focused on God to see us |
| organs by way of the bloodstream. The disease | | | | through the storm. And he did. We made it to |
| results when enough amyloid protein accumulates | | | | The Mayo Clinic. |
| in the tissues or organs in the body to cause the | | | | Irene: It must have been a huge decision to |
| tissue or organ to malfunction. | | | | make, to take the time to travel around the |
| The accumulated amyloid protein causes the | | | | country. Tell us more about the process that you |
| progressive malfunction of the affected organ. | | | | took on. |
| The heart, kidneys, nervous system, stomach, | | | | Deborah: Well, at first, we didn't know that we |
| and liver are most often affected. In Clyde's case, | | | | would be traveling. After the prognosis at the local |
| the accumulated amyloid protein caused his heart | | | | hospital, things just didn't appear too well for |
| to malfunction, so he blacked out. | | | | Clyde. I knew that I needed to do something. I |
| It is interesting to note that primary amyloidosis | | | | just didn't feel that enough was being done; |
| (AL) has some characteristics of a blood cell | | | | especially when we had so little information about |
| disorder and occasionally coexists with multiple | | | | the disease. So I looked up the disease in my |
| myeloma. Multiple myeloma is a cancer of the | | | | encyclopedia and while Clyde was in the hospitals, |
| plasma cells in the bone marrow. At first, the | | | | I visited several medical libraries to learn more |
| doctors originally thought that Clyde had multiple | | | | information about the disease. |
| myeloma. | | | | It really didn't take much thought to decide to |
| Irene: You took a huge mission to find more | | | | travel. Clyde and I knew that we had a race |
| information from a medical community that | | | | against time. Based upon the physician's prognosis, |
| wasn't able to communicate with you regarding | | | | Clyde didn't have but a year or so to live because |
| your husband's disease primary amyloidosis. Tell us | | | | of the aggressive nature of the primary amyloid |
| what inspired you to write a book of your | | | | disease. So, as we compiled information and |
| experience. | | | | learned of different hospitals, we decided to |
| Deborah: From the very beginning, after Clyde's | | | | pursue whatever lead that we had to find |
| death, I wanted to tell his story so others would | | | | someone to help him. |
| be educated about the devastating effects of | | | | It was a desperation move I know that, but we |
| primary amyloidosis (AL), but I didn't have the | | | | knew we had no choice but to pursue every |
| strength to talk about our family's tragedy. The | | | | opportunity to find someone who would be able |
| best that I could do then was to create a | | | | to help Clyde. And the most ironic thing: we did |
| website in 1996 about primary amyloidosis and I | | | | find someone to help Clyde with the disease, but |
| hoped others would read about Clyde's story and | | | | the wait was too much for his weakened body. |
| primary amyloidosis, from a personal perspective. | | | | He died within two weeks of receiving a |
| It took me nine years to finally tell Clyde's story | | | | life-saving heart transplant at The Mayo Clinic. |
| in I Feel Okay because I wanted my sons (Clyde | | | | Irene: Your husband was in coma for almost a |
| Daryl and Alex Keith) to know what happened | | | | week before he passed away. Tell us what you |
| and to leave them a legacy of their father. | | | | were able to do for yourself during this time, |
| I also wrote the book because I had a strong | | | | knowing that his time here was ending. |
| desire to educate the public about the devastating | | | | Deborah: I sat by Clyde's side and I prayed and |
| effects of the disease so others would learn | | | | read scripture many days. I was determined that |
| about the disease and to avoid another tragedy. | | | | I would be close to Clyde. I asked God to give |
| I'm thankful to say that Clyde's story has helped | | | | me strength through my tears of pain and |
| other people who are currently diagnosed with | | | | sadness, but I kept praying, even until the end of |
| primary amyloidosis (AL). | | | | Clyde's life. I talked to our children about Clyde's |
| Irene: It doesn't seem that you had much support | | | | state and I told them that we were in the place |
| from the medical community at large. Have you | | | | of hope. I also told them that if it was God's will |
| lost faith in it? | | | | to see Clyde through, then He would. And if it |
| Deborah: I would had hoped for more support | | | | was not His will to do so, then He wouldn't. |
| during Clyde's initial diagnosis of the disease, and | | | | We all continued as a family to pray for Clyde. At |
| during the early years of living without Clyde, I | | | | Clyde's bedside, I still knew that it was all in God's |
| was very disappointed with some of the doctors | | | | hands. The night before he passed out for the |
| who treated him. But I must say that the support | | | | final time, Clyde told me he felt okay. That's why |
| and understanding that we received at The Mayo | | | | I titled the book, I Feel Okay. |
| Clinic was absolute treasure! I won't ever forget | | | | Clyde's story is so precious to me. I watched his |
| the love and generosity that was transparent in | | | | faith strengthen to its highest degree, and I know |
| the eyes of Clyde's physicians and nurses as | | | | it was well with his soul as he closed his eyes in |
| caregivers. | | | | sleep. I won't ever forget that moment in the |
| And, no, I haven't lost my faith in the medical | | | | hospital room. And much of me remained in that |
| community. I have a tremendous respect for the | | | | hospital room as I said goodbye to my |
| men and women who work in the health care | | | | companion, my Innisfree, my life. |
| profession on a daily basis. Now, I'm more | | | | Irene: Once Clyde was gone, you had your own |
| cognizant of taking "charge" of my health care by | | | | grief to go through. Would you please share with |
| asking questions of the health care professionals | | | | our audience what steps you took in your grieving |
| about alternative solutions to the suggestive | | | | process. |
| mode of treatment. I believe in accessing | | | | Deborah: I felt I needed to write the sequel to I |
| websites such as WebMD as a source of | | | | Feel Okay, so I decided to talk about my grieving |
| information. This has been very helpful to me and | | | | process in my next book. It should come out |
| my family. | | | | sometime in late 2006 or early 2007. While Clyde |
| Irene: I understand that primary amyloidosis can | | | | was alive, I was living on the hope that God would |
| be managed with medications. How much | | | | save him, if it was His will to do so. After Clyde |
| manageability is there with meds? | | | | passed, I began to concentrate on our children |
| Deborah: Currently, there is no cure for primary | | | | and myself. During Clyde's illness, I hadn't thought |
| amyloidosis (AL). But, primary amyloidosis (AL) | | | | about me much. My main concern was to find |
| can be managed with medicines. The abnormal | | | | someone to help him. Once he was gone, I |
| amyloid protein that builds in the bone marrow | | | | concentrated on my children, hoping to help them |
| can be slowed or even stopped, if it is diagnosed | | | | come to terms with the loss of their father. I put |
| correctly and in time to stop the massive build up | | | | myself last. |
| of protein fibrils. | | | | I struggled with the pain. I felt so alone without |
| Currently, doctors are treating patients with | | | | Clyde. I prayed to God for strength and comfort |
| primary amyloidosis (AL) with a regimen of | | | | and I cried myself to sleep many nights, even |
| chemotherapy therapies to include melphalan and | | | | days. In my new book, I talk about my lonely |
| colchicine to respond to the abnormal plasma cells. | | | | road of pain and agony of losing my best friend |
| Additionally, physicians will also consider bone | | | | to death. And as I have done in I Feel Okay, I |
| marrow transplantation to introduce healthy cells | | | | hope that other people will be encouraged by |
| into the patient. Bone marrow transplantation | | | | reading my story about grief and suffering. |
| involves using high-dose chemotherapy and | | | | Irene: Now with hindsight more evident, is there |
| transfusion of previously collected immature or | | | | anything you think you should have done |
| new blood cells (stem cells) to replace the | | | | differently? |
| diseased or damaged marrow. These cells may | | | | Deborah: After living with the death of Clyde for |
| be harvested from the patient's or from a donor. | | | | some 11 years now, I don't think there is much |
| There are success stories in the treatment of | | | | that I could have changed. Clyde was able to |
| primary amyloidosis. I know of a person who has | | | | receive care from the best physicians in the world |
| survived more than 18 years with the disease. | | | | at The Mayo Clinic. I did learn that other hospitals |
| Again, the key is to be diagnosed in time to slow | | | | had amyloid research programs, such as Boston |
| or stop the massive build-up of the protein fibrils | | | | Medical and Indiana University. But again I know |
| in the body. | | | | that Clyde was surrounded by the best physicians |
| Irene: You mention being diagnosed early. What | | | | in the business. |
| are some of the signs that point toward primary | | | | I just would have loved to have found more |
| amyloidosis? | | | | information about the amyloid disease earlier in his |
| Deborah: If diagnosed early, primary amyloidosis | | | | diagnosis. Clyde was diagnosed with the amyloid |
| (AL) can be slowed and sometimes even stopped | | | | disease in December 1994. I didn't find the |
| in its production. I was very heart broken when I | | | | information from NORD (National Organization of |
| first learned this fact. I believe that things would | | | | Rare Disorders) until late January 1995. I believe |
| have turned out differently if Clyde would have | | | | that Clyde's outcome would have been different if |
| been diagnosed in time. | | | | we had known about The Mayo Clinic in |
| Symptoms of primary amyloidosis (AL) are | | | | December 1994. |
| pretty much consistent with other diseases. When | | | | Irene: It took quite some time before you were |
| considering the diagnosis, a physician should study | | | | able to put your story into writing. What was the |
| the symptoms of primary amyloidosis (AL) in | | | | tipping point for you that gave you the ability to |
| totality, not individually. During my extensive | | | | go forward with telling your story? |
| research, I discovered the following symptoms | | | | Deborah: My desire was to tell Clyde's story in |
| for the disease: Swelling of the ankles and legs, | | | | 1995, but as I mentioned earlier, I didn't have the |
| general weakness of the extremities, weight loss, | | | | strength to write a book, but I wrote "Primary |
| shortness of breath, numbness or tingling in the | | | | Amyloidosis, A Personal Perspective," in 1996. I |
| hands or feet (This symptom can be associated | | | | even wrote a letter to Oprah Winfrey hoping that |
| with carpel tunnel syndrome.), diarrhea, severe | | | | she would feature the rare disease during one of |
| fatigue, enlarged tongue, feeling of fullness after | | | | her talk show episodes. But I never heard from |
| eating smaller amounts of food than usual, and | | | | her, and this really broke my heart. I told Clyde's |
| finally, dizziness upon standing. | | | | story through the article on the internet to include |
| It should be noted that amyloidosis can be | | | | website addresses of research hospitals and |
| diagnosed only by positive identification using a | | | | agencies about the disease. |
| special Congo Red stain on a specimen of the | | | | In late 2003, I decided that I needed to put one |
| amyloid fibrils. The normal diagnostic preparations | | | | foot in front of the other and to finally tell Clyde's |
| in a laboratory will not yield a correct diagnosis of | | | | story to the world. I asked myself: how can I get |
| the amyloid disease. | | | | people to listen to me about the devastating |
| Irene: The disease is incurable. Is there research | | | | effects of this disease. And the answer that |
| going on right now for a cure? | | | | surfaced was to write Clyde's story in I Feel |
| Deborah: Yes, as I mentioned earlier, there is no | | | | Okay. Through a shower of tears, I finished |
| cure for the disease, but medicines and therapies | | | | writing the first draft of I Feel Okay in March |
| are available to slow or stop the progression of | | | | 2004, and published it in September 2005. |
| the build-up of the amyloid proteins in the body. | | | | Irene: You have a "bottom line" message in your |
| Currently, The Mayo Clinic and Boston Medical | | | | book. Would you expand a little on it. |
| Hospitals are the leading hospitals in research of | | | | Deborah: It took me a while to tell Clyde story in |
| the amyloid diseases. Throughout the last 10 | | | | I Feel Okay. But I knew that I needed to record |
| years, these two hospitals and others have | | | | his story to tell others about his life and the |
| continued research for new medications and | | | | deadly disease that caused his death at only 43 |
| therapies to combat primary amyloidosis (AL) and | | | | years young. I want others to learn from Clyde's |
| other amyloid diseases. | | | | story and his fight with primary amyloidosis (AL). I |
| Irene: You attribute a lot of your strength and | | | | want others to never accept "no" for answer. I |
| courage to your faith in God. Please tell your | | | | want people to educate themselves about the |
| reading audience how you personally were able to | | | | disease, whether it's amyloidosis or perhaps |
| surrender your will to God and strive for keeping | | | | another disease, and to never give up. |
| the journey in His hands. | | | | Clyde and I could have given up and stayed in our |
| Deborah: God has guided the Slappey family | | | | Columbus, Georgia home to let him die, but we |
| through many ordeals. And when we were faced | | | | didn't. Clyde came out swinging, swinging for life, |
| with this very rare disease, a disease that we | | | | and I am so very proud of him. He never gave |
| didn't know how to spell or pronounce at first, I | | | | up. He fought primary amyloidosis until the very |
| naturally turned to our Heavenly Father to guide | | | | end. It's my prayer that others in similar situations |
| us through this heavy storm in our lives. Nothing | | | | will never give up. Seek counsel, but keep fighting |
| can be added or subtracted from God's word. He | | | | for which you believe. |
| says in Proverbs 3:5-6, to trust in His word and | | | | Irene: Thank you for giving us insight on primary |
| not to rely on our own understanding, and to | | | | amyloidosis, a disease that most of us have |
| acknowledge Him to direct our paths. And we did. | | | | never heard of. Is there anything else that you |
| Clyde and I knew that this disease was bigger | | | | would like your readers to know about you or |
| than both of us; we had to rely on God's | | | | your book? |
| unchanging hands to help us through this awful | | | | Deborah: Primary amyloidosis (AL) is a disease |
| storm in our lives. God is all knowing and all seeing, | | | | that can be slowed and or stopped if it's |
| and we were willing to surrender all to him | | | | diagnosed in time. It's critical that the information |
| because we had nothing within ourselves to | | | | is made available to people around the world. |
| change the reality that Clyde was suffering with | | | | Primary amyloidosis (AL) doesn't discriminate. The |
| this deadly disease. I also knew that if it was | | | | disease affects people of all ethic origins, colors, |
| God's will to cure Clyde, he would be cured. I had | | | | nationalities, and creeds. As I said earlier, I wrote |
| complete trust in God and I surrendered to His | | | | Ms. Oprah Winfrey in 1996 and poured my heart |
| will. | | | | out to her. I waited to hear from her, but I never |
| Irene: Sometimes it is hard to trust and believe in | | | | did. I had hoped her celebrity status and |
| something greater than ourselves. What process | | | | assistance would help me to raise the awareness |
| did you go through to surrender your will to God? | | | | about the rare, deadly amyloid disease. |
| Deborah: I'm a member of the Church of Christ, | | | | I didn't perceive that people would embrace I Feel |
| and I try with the best of my abilities to do what | | | | Okay as many have. I had only planned to write |
| is right in God sight. I fall short, but I do try hard. I | | | | the facts about primary amyloidosis (AL) and then |
| learned a long time ago that there are some | | | | I would turn off my computer, and move on to |
| things I cannot change, no matter what I do. I | | | | other things. But somewhere in my writing of |
| knew that this disease was much bigger than | | | | Clyde's story, I surmised that the story was |
| Clyde and much bigger than me. I knew that I | | | | much bigger than I was, even much bigger than |
| couldn't change the situation that was laid out | | | | Clyde. So, over the past few months I have |
| before the Slappey family, so Clyde and I just did | | | | begun to speak to various groups - bible classes, |
| what we knew: we prayed. And we prayed and | | | | book talks at work and colleges, and appear on |
| prayed; asking God to give us the strength to | | | | numerous TV shows to talk about primary |
| deal with our family situation. | | | | amyloidosis (AL). Clyde's story has grown much |
| There were many times when my faith was | | | | bigger than me and it's being passionately |
| shaken during Clyde's ordeal, but God always | | | | received. For this, I'm very thankful. |
| strengthen me to keep on moving and holding on | | | | My mission now is to truly educate the world |
| to His unchanging Hand. And he did. I knew that | | | | about the devastating effects of the disease. I'm |
| God was carrying me in those dark days when | | | | now reaching out to our local, state, and even |
| the physician would walk into the room and | | | | national public figures, hoping that they will also |
| explain Clyde's prognosis. Many times, I wanted to | | | | embrace and bring into the public arena the |
| run away and hide, but I kept on praying because | | | | devastating effects of the primary amyloidosis |
| I knew that if it was God's will to deliver Clyde | | | | disease. |
| from this nightmare, He would. I knew that God | | | | My hope and prayer is that others will read |
| was in control and nothing would be added or | | | | Clyde's story, our personal family tragedy, and will |
| taken away, unless He allowed it. | | | | pass the information along to others. This, I feel, |
| Sad and unfortunate things happened to all people | | | | is the one way to ensure that Clyde's story in I |
| and on November 12, 1994 (the onset of Clyde's | | | | Feel Okay reaches epic proportion to people |
| blackouts), it happened to the Slappey family. I | | | | around the world. |
| don't want anyone to ever have to experience | | | | Irene: Thank you so much for sharing your story. |
| the pain and suffering that we did with the | | | | Is there anything else that you would like our |
| amyloid disease, and this is why I'm so passionate | | | | reading audience to know about your or your |
| and dedicated to educating the public about the | | | | book? |
| devastating effects of this disease. | | | | Deborah: Thank you so very much for reading I |
| Irene: It was evident to you and your family that | | | | Feel Okay. I am deeply humbled and grateful for |
| your husband would not recover from this | | | | your reading this review and Clyde's story, and |
| disease. What process that you go through to | | | | for telling others about the primary amyloidosis |
| accept this fact? | | | | (AL) disease. God bless you all. |
| Deborah: On the contrary, we didn't accept the | | | | |