Words of Encouragement
I received a comment this morning from Jan in Indianapolis (see comments). Thank you so much Jan for the words of encouragement. I want to be able to talk more with you about the disease and especially the treatments (stem cell transplant and chemos). You can reach me at my email address which is mythreesons02@aol.com. I have so many questions regarding the disease and you are the first person I have heard of who is in remission. Please contact me when its convenient. Thank you.
Monday, November 10, 2008
Sunday, November 9, 2008
AMYLOIDOSIS
I wish I never heard this word!! As most of you know, this is the disease I have that caused the damage to my old heart. Yesterday, Markie, Erin and I went to a support group meeting in Walnut Creek for Amyloidosis patients. I have to say it was nothing like my support group for heart transplant patients.
The mood was very grime and hard core. The members do not hold anything back and are very clear about their disease, treatment and life expectancy. Up until now I have chosen to stay in a denial state about my disease because managing the recovery of my heart transplant has been overwhelming. Knowing which drugs to take, the side effects and getting plenty of rest has been a full time job. Now I'm faced with dealing with the disease that has caused all of this.
I have started the chemo drug Decadron last Wednesday and today I'm feeling the side effects from it. It started last night with swelling around the neck and some soreness on the shoulders and back. Dr. Kevin said it usually happens on the third day but mine chose the fourth day, I guess. I hope this is from the chemo drug and not anything with the heart. I have no pain with the heart just this soreness in those areas. I did have a busy two days going shopping on Friday and the support group meeting yesterday. So today and Monday I need to get plenty of rest before heart biopsy on Tuesday.
Dr. Kevin was at the meeting yesterday and said that Kaiser, Stanford and the Mayo Clinic have all confirmed a treatment plan for us. I guess we will know on Tuesday at clinic what the treatment plan will be and when it will start. Dr. Kevin has made the choice to follow the chemo plan for 3 months and will undergo a stem cell transplant next year. I am very scared of the stem cell transplant. To me that is scary! It involves 2-4 weeks in the hospital, hotel stay (again) after transplant and still there is no guarantee that it will put the disease in remission. Most of the patients yesterday had stem cell transplants and are not in remission. They are still on very high doses of chemo fighting this horrible disease. I know I have to fight and its hard keeping up the positive attitude when everything looks so bad. But I have made a promise to my donor, her family and of course to my family and friends that I will fight this. I will! So sometime in the near future I will have the stem cell transplant if the chemo drugs do not work. On November 25th I have an appointment at Stanford to discuss my complete workup of how much Amyloid is in my body and what my prognosis is. Until then, I have to continue recovery and managing my beautiful new heart. I could not have a stem cell transplant without a new heart. My old heart would not have made it. This is alot to think about and I need to come out of my denial and face the facts. I have a fatal rare disease that needs to be treated now!
One thing that came out of the meeting yesterday from each and every patient. I have tried to stress this in my blog every time I sign on. That is to enjoy every moment! We don't know how many moments we have left and each is special. Please take this to heart and enjoy life and the moments we are given. Don't measure the number of breaths we have but the moments that take our breaths away. I want lots more moments where it takes my breath away. Like the first time I saw my beautiful children being born, going to Italy, watching Mark and Erin get married. These are the moments that take our breath away and I plan to have many more!
Enjoy this beautiful Sunday and especially enjoy each and every moment it brings!
love,
debbie
I wish I never heard this word!! As most of you know, this is the disease I have that caused the damage to my old heart. Yesterday, Markie, Erin and I went to a support group meeting in Walnut Creek for Amyloidosis patients. I have to say it was nothing like my support group for heart transplant patients.
The mood was very grime and hard core. The members do not hold anything back and are very clear about their disease, treatment and life expectancy. Up until now I have chosen to stay in a denial state about my disease because managing the recovery of my heart transplant has been overwhelming. Knowing which drugs to take, the side effects and getting plenty of rest has been a full time job. Now I'm faced with dealing with the disease that has caused all of this.
I have started the chemo drug Decadron last Wednesday and today I'm feeling the side effects from it. It started last night with swelling around the neck and some soreness on the shoulders and back. Dr. Kevin said it usually happens on the third day but mine chose the fourth day, I guess. I hope this is from the chemo drug and not anything with the heart. I have no pain with the heart just this soreness in those areas. I did have a busy two days going shopping on Friday and the support group meeting yesterday. So today and Monday I need to get plenty of rest before heart biopsy on Tuesday.
Dr. Kevin was at the meeting yesterday and said that Kaiser, Stanford and the Mayo Clinic have all confirmed a treatment plan for us. I guess we will know on Tuesday at clinic what the treatment plan will be and when it will start. Dr. Kevin has made the choice to follow the chemo plan for 3 months and will undergo a stem cell transplant next year. I am very scared of the stem cell transplant. To me that is scary! It involves 2-4 weeks in the hospital, hotel stay (again) after transplant and still there is no guarantee that it will put the disease in remission. Most of the patients yesterday had stem cell transplants and are not in remission. They are still on very high doses of chemo fighting this horrible disease. I know I have to fight and its hard keeping up the positive attitude when everything looks so bad. But I have made a promise to my donor, her family and of course to my family and friends that I will fight this. I will! So sometime in the near future I will have the stem cell transplant if the chemo drugs do not work. On November 25th I have an appointment at Stanford to discuss my complete workup of how much Amyloid is in my body and what my prognosis is. Until then, I have to continue recovery and managing my beautiful new heart. I could not have a stem cell transplant without a new heart. My old heart would not have made it. This is alot to think about and I need to come out of my denial and face the facts. I have a fatal rare disease that needs to be treated now!
One thing that came out of the meeting yesterday from each and every patient. I have tried to stress this in my blog every time I sign on. That is to enjoy every moment! We don't know how many moments we have left and each is special. Please take this to heart and enjoy life and the moments we are given. Don't measure the number of breaths we have but the moments that take our breaths away. I want lots more moments where it takes my breath away. Like the first time I saw my beautiful children being born, going to Italy, watching Mark and Erin get married. These are the moments that take our breath away and I plan to have many more!
Enjoy this beautiful Sunday and especially enjoy each and every moment it brings!
love,
debbie
Friday, November 7, 2008
DONOR INFORMATION
Dear Friends and Family, I have included in my blog site information from the DMV to register as an organ donor. Also, a poem from Robert Test that tells it all. I hope you will click on the sites and read the information and poem below under Dr. Kevin's blog site.
I can't tell you how important it is to become a donor. Please take the time to make an informed decision to become a donor.
My donor family made the ultimate decision to donate their beautiful child's organs which saved many lives that day. They gave me a second chance at life and I am so grateful for their decision. I will alway honor and cherish the shared heart I have beating inside me. My donor lived 18 years with this beautiful heart and I will live the rest of mine with her heart beating inside me. I will never take this for granted.
Please tell everyone you know to become a donor. Become a HERO and donate!
love,
debbie
Dear Friends and Family, I have included in my blog site information from the DMV to register as an organ donor. Also, a poem from Robert Test that tells it all. I hope you will click on the sites and read the information and poem below under Dr. Kevin's blog site.
I can't tell you how important it is to become a donor. Please take the time to make an informed decision to become a donor.
My donor family made the ultimate decision to donate their beautiful child's organs which saved many lives that day. They gave me a second chance at life and I am so grateful for their decision. I will alway honor and cherish the shared heart I have beating inside me. My donor lived 18 years with this beautiful heart and I will live the rest of mine with her heart beating inside me. I will never take this for granted.
Please tell everyone you know to become a donor. Become a HERO and donate!
love,
debbie
Thursday, November 6, 2008
LAB RESULTS
Just spoke with Sue, Nurse at Santa Clara Heart Transplant Center. My cyclosoporine count was 237, which is within the range of 200 to 250. They did not change any medicines at this time. Will look after next week's biopsy. The chemo drug Decadron she said is equivalent to 200mg a day of Prednisone. Now that makes me really happy. She said the side effects is being wired and the usual puffy cheeks (more than I have now) weight gain and staying up all night. I take the drug once a week, so she said it is slow acting. She did say that Dr. Dana has talked to the Mayo Clinic, Dr. Brooke Edwards and Stanford to discuss further treatment for Dr. Kevin and me. I will know something next week. I am feeling terrific except for no sleep last night. I plan to take a little nap now and one later this afternoon. The other lab tests for the disease Amyloidosis have not come in yet, should know something next week.
I hope you enjoy the poem "Life". I will post these words from time to time, I think it is important for us to live our lives each day "not by the breaths we take but by the moments that take our breath away". On September 26, 2008, a moment took my breath away, was the moment my new shared heart starting beating inside me. I bless my donor and her family for the blessing I receive that night. I feel deep gratitude for the decision they made to save my life. I have not spoke too much about my donor and my donor family. I don't know much except she was 18 years old from a local community. I wrote my letter to the donor family telling them my deepest gratitude for the gift of life and hope someday they will contact me.
Have a wonderful day. The sun is shining and it is beautiful outside.
love,
debbie
Just spoke with Sue, Nurse at Santa Clara Heart Transplant Center. My cyclosoporine count was 237, which is within the range of 200 to 250. They did not change any medicines at this time. Will look after next week's biopsy. The chemo drug Decadron she said is equivalent to 200mg a day of Prednisone. Now that makes me really happy. She said the side effects is being wired and the usual puffy cheeks (more than I have now) weight gain and staying up all night. I take the drug once a week, so she said it is slow acting. She did say that Dr. Dana has talked to the Mayo Clinic, Dr. Brooke Edwards and Stanford to discuss further treatment for Dr. Kevin and me. I will know something next week. I am feeling terrific except for no sleep last night. I plan to take a little nap now and one later this afternoon. The other lab tests for the disease Amyloidosis have not come in yet, should know something next week.
I hope you enjoy the poem "Life". I will post these words from time to time, I think it is important for us to live our lives each day "not by the breaths we take but by the moments that take our breath away". On September 26, 2008, a moment took my breath away, was the moment my new shared heart starting beating inside me. I bless my donor and her family for the blessing I receive that night. I feel deep gratitude for the decision they made to save my life. I have not spoke too much about my donor and my donor family. I don't know much except she was 18 years old from a local community. I wrote my letter to the donor family telling them my deepest gratitude for the gift of life and hope someday they will contact me.
Have a wonderful day. The sun is shining and it is beautiful outside.
love,
debbie
Wednesday, November 5, 2008
Tuesday, November 4, 2008
DOCTORS APPOINTMENT TODAY
Just got home from Santa Clara and meeting with Jackie, nurse at the Heart Transplant Center. I have been having problems with evaluated blood pressure and headaches since I came home last Thursday. On Friday, I finally called and told them what was going on. Sue changed the dosage of the drug Gengraf and added another pill (that makes me happy) Dilacor twice a day for high blood pressure. Today, my blood pressure at the Heart Center was 122/87, which is great. Pulse is high at 107 but they are not concerned because I'm a recent transplant patient. So my visit was great! No problems at all! Tonight Mark will bring me to Kaiser Santa Rosa so I can have my lab work done to check the Cyclosporine count before next Tuesday's biopsy. This level is what tells them whether a rejection could be possible next week. I have to be at 200-250. My level was very high at 311 last week and that was the reason for high blood pressure and the headaches. So hopefully, tomorrow I can check on line and see what my count is. Again, if it's high or low, they will adjust the dosage of Gengraf before next Tuesday.
Dr. Dana has been talking directly with the Mayo Clinic regarding the chemo treatment for both me and Dr. Kevin. The Mayo Clinic decided that I will begin the chemo drug Decadron tomorrow. It is an oral drug taken once a week. The mg are 4mg in which I have to take 10 at a time. That makes me even happier (more pills). Oh well, whatever it takes to fight the disease and protect my beautiful new heart I will do. Dr. Kevin is feeling terrific. I talked to him last night when I was having all these problems. He reassured me and said everything will be ok.
On Saturday, Markie, Erin and me are attending an Amyloidosis support meeting at Kaiser in Walnut Creek. Dr. Kevin will be there also. This is the Northern California support group for those who are suffering from the disease. I very nervous because I'm sure there will be both happy and sad stories to tell. I hope it will be just as wonderful as the heart transplant support group I belong to in Santa Clara. I have so many friends (Dr. Kevin and Barbie, Tippy and many more) who gives me courage during the hard times. I'm glad Dr. Kevin will be there too!
Tomorrow and Thursday I plan to rest and relax. I want to be rested before next Tuesday's biopsy. Mark, Markie, Erin and me are staying the night in Sunnyvale because I have to be at the hospital at 7:00AM for heart biopsy, chest x rays, lab, clinic, support group and then 2 hour infusion. Another 10 hour day! On Friday, Mom and I get to go to our friend Susan for manicure, pedicure and waxing. Mom is finally getting her hair cut, just like Victoria Beckman's new style. She is going to look HOT! We then will go to Walmart because I need some green plants for my new guest bedroom (Maxwell's old room - won't he be surprised when he comes home in December) and a chair for my computer.
I'm off to Kaiser now. Have a wonderful evening, it's going to be cold. Always enjoy this moment in time!
Love,
debbie
Just got home from Santa Clara and meeting with Jackie, nurse at the Heart Transplant Center. I have been having problems with evaluated blood pressure and headaches since I came home last Thursday. On Friday, I finally called and told them what was going on. Sue changed the dosage of the drug Gengraf and added another pill (that makes me happy) Dilacor twice a day for high blood pressure. Today, my blood pressure at the Heart Center was 122/87, which is great. Pulse is high at 107 but they are not concerned because I'm a recent transplant patient. So my visit was great! No problems at all! Tonight Mark will bring me to Kaiser Santa Rosa so I can have my lab work done to check the Cyclosporine count before next Tuesday's biopsy. This level is what tells them whether a rejection could be possible next week. I have to be at 200-250. My level was very high at 311 last week and that was the reason for high blood pressure and the headaches. So hopefully, tomorrow I can check on line and see what my count is. Again, if it's high or low, they will adjust the dosage of Gengraf before next Tuesday.
Dr. Dana has been talking directly with the Mayo Clinic regarding the chemo treatment for both me and Dr. Kevin. The Mayo Clinic decided that I will begin the chemo drug Decadron tomorrow. It is an oral drug taken once a week. The mg are 4mg in which I have to take 10 at a time. That makes me even happier (more pills). Oh well, whatever it takes to fight the disease and protect my beautiful new heart I will do. Dr. Kevin is feeling terrific. I talked to him last night when I was having all these problems. He reassured me and said everything will be ok.
On Saturday, Markie, Erin and me are attending an Amyloidosis support meeting at Kaiser in Walnut Creek. Dr. Kevin will be there also. This is the Northern California support group for those who are suffering from the disease. I very nervous because I'm sure there will be both happy and sad stories to tell. I hope it will be just as wonderful as the heart transplant support group I belong to in Santa Clara. I have so many friends (Dr. Kevin and Barbie, Tippy and many more) who gives me courage during the hard times. I'm glad Dr. Kevin will be there too!
Tomorrow and Thursday I plan to rest and relax. I want to be rested before next Tuesday's biopsy. Mark, Markie, Erin and me are staying the night in Sunnyvale because I have to be at the hospital at 7:00AM for heart biopsy, chest x rays, lab, clinic, support group and then 2 hour infusion. Another 10 hour day! On Friday, Mom and I get to go to our friend Susan for manicure, pedicure and waxing. Mom is finally getting her hair cut, just like Victoria Beckman's new style. She is going to look HOT! We then will go to Walmart because I need some green plants for my new guest bedroom (Maxwell's old room - won't he be surprised when he comes home in December) and a chair for my computer.
I'm off to Kaiser now. Have a wonderful evening, it's going to be cold. Always enjoy this moment in time!
Love,
debbie
Sunday, November 2, 2008
A BEAUTIFUL SUNDAY
What a beautiful day today is. The sun is shining with broken clouds. Thought it would rain but no rain in sight.
Woke up this morning very early because of the time change. Wrote thank you notes and study Italian lessons. Eat a big breakfast and fell back to sleep for an hour nap. Did that feel great!
Markie came to visit and wash clothes. He is so helpful with my computer problems and of course my computer skills. He is teaching me so many cool things about the computer. I am so blessed to have such a wonderful son. Not to forget Matthew and Maxwell, who both bring me so much love and happiness. I thank God each day for blessing me as a mother. There is no other job in the world that compares to being a "MOM".
Anita Rackerby came by the other day and dropped off a special silver bracelet she got for me in Mexico. The words inscribed on the bracelet read: Family - Hope - Trust - Joy -Truth -Charity -and Love. These are very important words in all of our lives. I thank her for the special gift. I will treasure it forever!
My Auntie Bev sent me a special Italian CD called Il Divo "Ancora". The singers are Italian - very nice looking Italian men and can they sing. There are several songs with Celine Dion. I play it really loud, I'm sure the neighbors can hear it! It reminds me of Italy and my hope (there is one of the words) to go back in two years. What a beautiful country with beautiful people.
Tomorrow is Monday and Mark will be going back to work. I plan to rest because Mom and I have to go to Santa Clara for my doctor's appointment on Tuesday. No heart biopsy this week, thank God, my neck is soooo sore! I have a big day on November 11th, so I get to rest this week. I plan to watch movies, Legally Blonde 1 & 2 and maybe Sex in the City for the 5th time. Funny movie!! I guess from now until the first of the year this will be my routine each day. I was thinking this morning that I need to continue my daily activities just like before such as getting up taking a shower and putting on makeup etc. I think it will be good for the mind, soul and body. I'm frustrated about exercising, but Debbie Looney thinks we can work that out. Possibly take me to Break Through Fitness (my Gym) and work out on the stationary bike while she works out with Tim Rogers, our personal trainer. Wow do I miss super slow!!! Doctor said I can do lower body but no upper body what so ever! Maybe at the first of the year I can start doing lower body super slow with Tim. I know my body needs to recover and heal. Believe me I do whatever the doctors say. I do not take any chances. I have been given a second chance at life and I will not take it for granted. That is a promise I have made to my donor and my donor's family.
It's about 4:30PM and it's starting to get dark. I love this time of year.
Have a wonderful Sunday evening and enjoy this moment in time!
love,
debbie
What a beautiful day today is. The sun is shining with broken clouds. Thought it would rain but no rain in sight.
Woke up this morning very early because of the time change. Wrote thank you notes and study Italian lessons. Eat a big breakfast and fell back to sleep for an hour nap. Did that feel great!
Markie came to visit and wash clothes. He is so helpful with my computer problems and of course my computer skills. He is teaching me so many cool things about the computer. I am so blessed to have such a wonderful son. Not to forget Matthew and Maxwell, who both bring me so much love and happiness. I thank God each day for blessing me as a mother. There is no other job in the world that compares to being a "MOM".
Anita Rackerby came by the other day and dropped off a special silver bracelet she got for me in Mexico. The words inscribed on the bracelet read: Family - Hope - Trust - Joy -Truth -Charity -and Love. These are very important words in all of our lives. I thank her for the special gift. I will treasure it forever!
My Auntie Bev sent me a special Italian CD called Il Divo "Ancora". The singers are Italian - very nice looking Italian men and can they sing. There are several songs with Celine Dion. I play it really loud, I'm sure the neighbors can hear it! It reminds me of Italy and my hope (there is one of the words) to go back in two years. What a beautiful country with beautiful people.
Tomorrow is Monday and Mark will be going back to work. I plan to rest because Mom and I have to go to Santa Clara for my doctor's appointment on Tuesday. No heart biopsy this week, thank God, my neck is soooo sore! I have a big day on November 11th, so I get to rest this week. I plan to watch movies, Legally Blonde 1 & 2 and maybe Sex in the City for the 5th time. Funny movie!! I guess from now until the first of the year this will be my routine each day. I was thinking this morning that I need to continue my daily activities just like before such as getting up taking a shower and putting on makeup etc. I think it will be good for the mind, soul and body. I'm frustrated about exercising, but Debbie Looney thinks we can work that out. Possibly take me to Break Through Fitness (my Gym) and work out on the stationary bike while she works out with Tim Rogers, our personal trainer. Wow do I miss super slow!!! Doctor said I can do lower body but no upper body what so ever! Maybe at the first of the year I can start doing lower body super slow with Tim. I know my body needs to recover and heal. Believe me I do whatever the doctors say. I do not take any chances. I have been given a second chance at life and I will not take it for granted. That is a promise I have made to my donor and my donor's family.
It's about 4:30PM and it's starting to get dark. I love this time of year.
Have a wonderful Sunday evening and enjoy this moment in time!
love,
debbie
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