Slept ok last night except being woken up every two hours for vitals. My Hematocrit level was 33, so no blood transfusions last night. White blood cell count is down to 4.3 and platlets down to 233. Nurses will take blood draws again tonight to see where my counts are today.
Yesterday I had a big surprise! My brother Joey came down and stayed with me all day. We had a great visit. Rachel was having her bridal shower so he thought he would come visit me. It was a special moment. I felt bad falling asleep during our visit but he understood. I love my little brother.
Today Mark, Mom, Maxwell and Markie came to visit. It was so good to see them. I haven't seen them since Tuesday. Maxwell teased about wearing the doctors scrubs and said he would never make it as a doctor. Markie helped me set up Nexflix so I can download and order movies while I'm here in the hospital. I watched "Made in Honor" this afternoon. Cute movie. I loved the background scenes in Scotland. Another place I need to put on my list of places to go.
Tonight I am going to watch the 2nd game of the Stanley Cup finals between the Pittsburgh Penguins and Detroit Red Wings. Pittsburgh lost last night and hopefully can come back tonight. I hope my blood work comes back fine so I can get some rest tonight.
Tomorrow night is my favorite program "The Bachelorette". I missed the show last week because I went to dinner. So I'm excited to see which bachelors are still on the show.
Thank you to everyone who have made comments on the blog. I appreciate your love and support.
Have a wonderful evening! Wish I was with you!
Love,
Debbie
Sunday, May 31, 2009
Saturday, May 30, 2009
Transplant Day
Yesterday was Transplant Day and to be honest was a little rough on me. I didn't have a very good night the night before. I was sick to my stomach all night and then as the transplant began I started getting sick again. So through the whole procedure until they were able to give me nausea medicine I was really sick. The rest of the day I slept and tried to get as much rest as possible.
Mom, Gary and Debbie came to visit in the afternoon. We had a quiet visit because I kept dozing off to sleep. It was so hard to have Mom leave me. I wish she could stay with me. It gets so lonely here by myself.
In the middle of the night around one, the nurse came in and woke me up to tell me my hematocrit had fallen to below 28 and they were going to give me blood infusions. My blood pressure was dropping also down to 85/60, which is very low for me. Ok by now I'm scared. They started the blood infusions and were here in my room all night long taking vitals and talking to me.
This morning I am tired and weak. I don't have much of an appetite for food but I am forcing myself to eat something. It's even getting hard to take my medicines. I plan to rest all day today and catch up on my sleep. Mark, Mom and Maxwell will be visiting tomorrow so I want to be rested. I can't wait to see them. I miss everyone so much.
Funny thing happened yesterday too. One of the nurses came in and said "Happy Birthday". I said it wasn't my birthday but she said yes it is. You have just begun a new life with the stem cell transplant. Your body is starting over from birth. So I thought ok I really have 3 birthdays now - November 22nd is birth date; September 26th heart transplant date and May 29th is stem cell transplant date. Wow I can really use this to my benefit!!!
Have a wonderful day!
Love,
Debbie
Mom, Gary and Debbie came to visit in the afternoon. We had a quiet visit because I kept dozing off to sleep. It was so hard to have Mom leave me. I wish she could stay with me. It gets so lonely here by myself.
In the middle of the night around one, the nurse came in and woke me up to tell me my hematocrit had fallen to below 28 and they were going to give me blood infusions. My blood pressure was dropping also down to 85/60, which is very low for me. Ok by now I'm scared. They started the blood infusions and were here in my room all night long taking vitals and talking to me.
This morning I am tired and weak. I don't have much of an appetite for food but I am forcing myself to eat something. It's even getting hard to take my medicines. I plan to rest all day today and catch up on my sleep. Mark, Mom and Maxwell will be visiting tomorrow so I want to be rested. I can't wait to see them. I miss everyone so much.
Funny thing happened yesterday too. One of the nurses came in and said "Happy Birthday". I said it wasn't my birthday but she said yes it is. You have just begun a new life with the stem cell transplant. Your body is starting over from birth. So I thought ok I really have 3 birthdays now - November 22nd is birth date; September 26th heart transplant date and May 29th is stem cell transplant date. Wow I can really use this to my benefit!!!
Have a wonderful day!
Love,
Debbie
Thursday, May 28, 2009
The Mohawk Was a Joke
The boys were teasing me to cut my hair into a mohawk and wear that until my hair fell out. Well I can't do that but Teri cut my hair and shape it into a mohawk so the boys could see what their Mom looked like with a mohawk. These pictures are what I look like now. It was emotional but its either "hair" or "life". I chose LIFE!
Today is the big day "Transplant Day" or Day 0. I don't know what time my transplant will take place but they say you are pretty out of it from the drugs they will be giving me for reactions to DSMO and nausea. I should sleep most of the day.
I'm glad this part is over and I can move on to begin recovery and my new normal life. I have to get through this next week and be on the road to recovery.
Have a wonderful day. Make moments that take your breath away.
Love,
Debbie
Minus One Day to Transplant
Tomorrow is the big day transplant. Yesterday I spent the whole day resting. I felt great with lots of energy. Could be the Decadron they are giving me again which wires me up and that's why I'm writing at 4:00 in the morning. They gave me Decadron to help with nausea during chemo. I watched two movies, Under the Tuscan Sun and Return to Me. Both my favorite movies and they both were filmed in Italy which makes me so happy when I watch and see places I have been to. I finally got to take a shower and wash my hair for the last time before Teri buzzs it off today. It felt so good. I have been walking 20 minutes around the loop of the E1 unit. Very boring! I'm used to walking next to vineyards and parks. I hate staring at the walls and seeing other patients through the windows of their rooms. They are not allowed to come out due to their white cell count. I'll be there next week.
So today, Teri and Linda will be here around 2:00PM. I'm so excited to see them and of course cutting my hair. I want it over and done with, so I don't have to stress anymore about it. We are going to have some fun first. Check out my blog later this evening.
My friend Laura who just completed a stem cell transplant in Los Angeles told me a trick to use while they infuse the stem cells back into my body. The stem cells are preserve with a drug called DSMO. This drug has a very strong odor and it causes a bad taste in your mouth and breath. She said a nurse there told her to suck on suckers while being infused. So I texted Linda and told her to bring me some "suckers". She texts back "husbands or candy". I needed that, she is so funny!
Mom, Gary and Debbie will come to visit tomorrow. Gary and Debbie leave Sunday for Switzerland, so they won't see me for a few weeks. I have that on my list of places to go.
Enjoy the moments today.
Love,
Debbie
So today, Teri and Linda will be here around 2:00PM. I'm so excited to see them and of course cutting my hair. I want it over and done with, so I don't have to stress anymore about it. We are going to have some fun first. Check out my blog later this evening.
My friend Laura who just completed a stem cell transplant in Los Angeles told me a trick to use while they infuse the stem cells back into my body. The stem cells are preserve with a drug called DSMO. This drug has a very strong odor and it causes a bad taste in your mouth and breath. She said a nurse there told her to suck on suckers while being infused. So I texted Linda and told her to bring me some "suckers". She texts back "husbands or candy". I needed that, she is so funny!
Mom, Gary and Debbie will come to visit tomorrow. Gary and Debbie leave Sunday for Switzerland, so they won't see me for a few weeks. I have that on my list of places to go.
Enjoy the moments today.
Love,
Debbie
Wednesday, May 27, 2009
Stem Cell Transplant Begins
Visual Calendar Tracking Progress
My First DayYesterday was my first day beginning the stem cell transplant. I never quite understood how Dr. Kevin tracked the days during his stem cell transplant, until nurse Frances came in this morning and posted this calendar. It is a visual aid marking the days, blood count and platelet count. So today is -2 days to stem cell transplant date on Friday. Stem cell transplant day is consider day 0 (zero) and then we go up from there.
I received the first dose of chemo last night. I have not felt any side effects YET. The nurses assured me their coming. So by this weekend I should start to feel things happening. The chemo destroys my bone marrow and the infusion of those healthy stem cells taken out 2 weeks ago restores the bone marrow. I have to let my body do its job and so far through these moments it has done quite well. I also can't forget my beautiful shared heart, which has the most important job of keeping all my organs working. God bless you, Jazmin.
Today is the second day of chemo and that's it. It's so funny, if you want to look at it that way. The bag of chemo is so small but so lethal and powerful. Amazing! So for today I plan to do some walking outside my room because soon I will not be able to leave my room once my white blood cell count goes to zero. I will watch some movies (old favorites like Under the Tuscan Sun). I watched Sex in the City again last night for the 10th time. What a funny movie.
Tomorrow Teri Nappi and Linda Ford will come to buzz my hair off. I don't want to wait until it falls out because everyone says its really traumatic. So Teri will cut it as short as possible and I'll wait for the rest to fall out. I didn't bring my wig to the hospital because I figured I wouldn't be in any beauty pageants here but I brought 2 caps to wear. Mom is going to pick up some scarfs to wear also. I have to admit, and those friends and family who know me, know this is going to be tuff. Why do we put so much weigh on whether we have hair or not. There is no difference between being bald or wearing a mask, think about the person and what they are going through at this moment.
I really need your prayers now to come through this procedure with the least amount of side effects and complications. Please say a little prayer for me.
Enjoy the moment, I am. I'm grateful for this moment, because 8 months ago I might not have had this moment to share with you.
Love,
Debbie
Monday, May 25, 2009
Tomorrow is the Day
Should I say "D" day? Tomorrow I will be admitted to Stanford to begin the stem cell transplant. I remember the day I left to be admitted to Kaiser waiting for the heart transplant. It was such a joyous day. I had friends at the house all day visiting and sharing precious moments. I wasn't afraid but felt this glow inside my body. I knew I was going to be healthy and fine. That was September 21, 2008 and then on September 26, 2008, my new shared heart was beating inside me. My life changed forever that day!
First of all, I have great gratitude to my donor, Jazmin and her family. Evelyn, you are a special lady and a great support to me. You have opened your arms and heart to me. I feel your love each day. I love my little sisters, Jessika, Ashanti and Angelina so very much. Thank you for being here for me.
And now my gratitude goes out to all the doctors, nurses, social workers, coordinators with Kaiser and Stanford, who have helped me through this difficult process. I would not be here today without their skillful hands and minds.
My deepest love and gratitude to all of my family, friends, fellow heart transplant recipients and Amyloidosis support group friends for all the prayers and thoughts. I have a positive attitude because all of you would not have it any other way. When I feel down, you would pick me up and show me how precious life is. I have the inner strength because of each and every one of you.
Yesterday was one of those difficult days. I watched my youngest son's face sadden as he watch me cry. I knew then I had to get out of it and stop feeling sorry for myself but feel happiness that I have a choice. That I have options, where others don't. Today has been a great day. I went to breakfast (my favorite) with Gary and Debbie. Tonight they are taking me to the coast for dinner. We are leaving soon to see the sun set on the ocean. Maxwell even said this afternoon that I could have ran a marathon because I was in a better mood today.
Mark and I were going to stay at cousin Maria's tonight but her son Phillip got sick last night. I can't take the chance on getting sick so we had to cancel. I know she was very disappointed but she understood. She will come and visit with me in the hospital I'm sure.
So tomorrow I will call Unit E1 at Stanford early in the morning to see if they have a bed for me and then we will drive to Stanford. First thing I'm asking for is the lunch and dinner menu. I can't go without food. Tomorrow will be first day of chemo so who knows if I will be able to eat. We will have to wait and see.
Have a wonderful evening. Enjoy each and every moment.
Love,
Debbie
First of all, I have great gratitude to my donor, Jazmin and her family. Evelyn, you are a special lady and a great support to me. You have opened your arms and heart to me. I feel your love each day. I love my little sisters, Jessika, Ashanti and Angelina so very much. Thank you for being here for me.
And now my gratitude goes out to all the doctors, nurses, social workers, coordinators with Kaiser and Stanford, who have helped me through this difficult process. I would not be here today without their skillful hands and minds.
My deepest love and gratitude to all of my family, friends, fellow heart transplant recipients and Amyloidosis support group friends for all the prayers and thoughts. I have a positive attitude because all of you would not have it any other way. When I feel down, you would pick me up and show me how precious life is. I have the inner strength because of each and every one of you.
Yesterday was one of those difficult days. I watched my youngest son's face sadden as he watch me cry. I knew then I had to get out of it and stop feeling sorry for myself but feel happiness that I have a choice. That I have options, where others don't. Today has been a great day. I went to breakfast (my favorite) with Gary and Debbie. Tonight they are taking me to the coast for dinner. We are leaving soon to see the sun set on the ocean. Maxwell even said this afternoon that I could have ran a marathon because I was in a better mood today.
Mark and I were going to stay at cousin Maria's tonight but her son Phillip got sick last night. I can't take the chance on getting sick so we had to cancel. I know she was very disappointed but she understood. She will come and visit with me in the hospital I'm sure.
So tomorrow I will call Unit E1 at Stanford early in the morning to see if they have a bed for me and then we will drive to Stanford. First thing I'm asking for is the lunch and dinner menu. I can't go without food. Tomorrow will be first day of chemo so who knows if I will be able to eat. We will have to wait and see.
Have a wonderful evening. Enjoy each and every moment.
Love,
Debbie
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