Journal of My Fight against PNH and my
Bone Marrow Transplant
Link to
Today's Entry 03/15/02
You can also check my Appointment schedule by clicking here
Date |
Day |
Counts |
Narrative |
|
1986 |
I had been diagnosed with Aplastic Anemia in 1986 when I was 6 years old. I recovered without treatment. I was treated at Stanford Children's Hospital. | |||
1991 |
In 1991 I was diagnosed with a brain stem glymous which was later identified as a Cyst and was successfully treated with high doses of Penicillin and Ampicillin | |||
1/13/99 |
I had a routine Physical Examination by Dr. Rocco. Due to my background he wanted to run a blood test on me. | |||
1/19/99 |
WBC RBC HGB PLT |
2.3 1.04 4.2 113 |
Dr. Rocco receive the results of the blood test and was alarmed by the
test results he asked that I be screened further at Hazel Hawkins Hospital in Hollister,
CA.
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|
1/25/99 |
Appointment with Dr. Yanagihara to have a Bone Marrow Biopsy. After
review of Blood work and biopsy. I was referred to Dr. Glader at Stanford Children's
Hospital. Dr. Glader had previously treated me in 1986. Dr. Yanagihara and Dr.
Glader wanted me to be transfused immediately and transported to Stanford Children's
Hospital in Palo Alto, California. Things were happening too fast. My father was concerned about having excessive transfusions especially if a BMT was indicated. We chose to hold off on the transfusions and drove to my Dad's home which is 10 Miles from Stanford Children's Hospital. |
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1/27/99 |
Today we went to Children's hospital for the first time in many years. Blood tests were done and Dr. Glader wanted me to be transfused immediately to bring up my blood levels. He was concerned of transfusing too quickly as my counts were so low. The first pint was run into me at a rate of 1 pint over 4 hours. A second pint was run in over 3 hours. I was lucky that we could do this in the day hospital. Additional blood draws were done and we went home for the evening. | |||
1/28/99 |
Well, back to the day hospital today for another pint of blood. Dr. Glader discussed what he had seen in the Bone Marrow Biopsy. The cell development was poor and there was abnormal cell development. I am really concerned that it is Leukemia. Dr. Glader ordered a second Bone Marrow Biopsy. After the third pint of blood my HGB was up to 9.7 and they were happy with this until they could figure out what was going on. | |||
2/16/99 |
I had a visit with Dr. Kim, he is part of the Bone Marrow Transplant team. He gave me a run down on what the BMT will do for me, as well as the complications that could go wrong. Then he gave me a tour of the ward were I'd be receiving treatment. | |||
2/18/99 |
Today my brother Seth went into Stanford for HLA Cross Matching. He was previously matched as a perfect match back in 1986. I sure hope he is still a match | |||
3/24/99 |
WBC RBC HGB PLT |
2.3 2.57 9.2 108 |
I went in for my blood counts to be tested, and was given many tests for HIV or other transmitted diseases.My counts are as followed: | |
3/26/99 |
Today Seth had to go into Stanford for a consultation with Dr. Amylon. They had to do a full blood work up and x-rays and get his consent for being my Donor. He is so good to do this for me. | |||
4/1/99 |
Today I went to Stanford to have the radiology dept. examine me and take x-rays. Then I had to go to have an ECHO of my heart done, and a ultrasound of my heart and a pulmonary diagnostic done to me. To make sure everything is working properly. I saw my old friend from high school Gabe, he was in for a check up due to his BMT. I talked to him and we arranged to talk about the experience. | |||
4/7/99 |
Today I had a consultation with the surgeons for the insertion of the Hickman Catheter. I had to fill out admitting papers as well. Tomorrow I am having the Hickman catheter inserted into my subclavian vein, this catheter will be used to administer drugs as well as the bone marrow. | |||
4/8/99 |
Today I had my Hickman Catheter put in my subclavian artery. I was heavily sedated and was given a shot of Valium. My appointment was scheduled for 3:00, but I was not seen till 6:00 PM, the procedure took 45 minutes. The area is still sore, but they gave me some Vicadin for the pain. | |||
4/9/99 |
Today I went in to the hospital for a lesson on how to clean my Hickman Catheter as well as put heprin in it so it will not clot. There are many steps, but it will ensure that I will not get infections around the catheter. | |||
4/10/99 |
I am packing all my things for my stay in the hospital. I am packing mostly sweats and PJ's, and slippers and my teddy bear. I also am taking a photo album so I can see my friends and family. There is so many things I need, but not enough bags to carry it all. My friend Gabe gave me ideas for what I will need to bring, since he too had the procedure. | |||
4/11/99 |
This is the day before the big day. From this moment on I will have a new life, and many thoughts are in my mind. I am spending the day with the people that love me, I will treasure this day for s long time. I have to be in the hospital tomorrow at 10 am. | |||
4/12/99 |
-8 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT |
2.7 2.08 7.4 21.2% 102.0 35.8 35.0 22.9 96 |
Today is the Big Day, I have a appointment with Radiology at 4 PM to check
my lung shields to make sure they fit properly. It is just the beginning of my journey. I
am scared, but trying to keep positive thoughts. My blood counts had dropped so the had to give me a transfusion of 2 pints of blood overnight. |
4/13/99 |
-7 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT |
2.9 2.53 8.8 25.3 99.9 34.8 34.8 27.4 93
|
Today was the first day of Radiation. I threw up already 4 times, after
every treatment. I feel really horrible, and queasy. After every meal or drink I throw up,
this is so far been horrible to endure. I have asked the nurses for a heavier drug to stop
the nausea. After the radiology appointment at 4:00 P.M. Alison cam back and had dinner. She had just been very sick during her final treatment of the day. After dinner, Alison was give a pretty heavy dosage of Benadryl and Phenergan. She fell asleep almost instantly Ray, her fiancée, came to visit at 6:00-9-00 PM and reported that she was asleep almost the entire time he was there. Alison was given another two pints of blood tonight to get her counts a little higher. The would like to keep her HGB at or above 9.0. The combination of PNS and Radiation are are killing off her blood. This is not unusual and she will have many more transfusions before this is over. |
4/14/99 |
-6 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutrophil |
2.9 3.41 11.8 32.7 96.1 34.5 35.9 21.8 96 2.00 |
Today radiation was better, I was able to keep down my breakfast and took
a walk to the cafeteria with my father and had some coffee. My mother and step- father
will be coming to visit today. I have another appointment with radiation at 12:00 and 4:00
still to go today. They also radiated my ribs today with neutron x-ray machine. The
radiation wont make my hair fall out, but the chemo will. Alison really did great today. With the aid of her meds she didn't get sick all day. She was in great spirits and really enjoyed a visit from her mother and step-father. Ray and his sister are coming to visit tonight. |
4/15/99 |
-5 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutrophil |
1.8 3.191 10.6 31.3 97.9 33.4 34.1 21.7 82 1.3 |
Today was a rather mixed day for me. I had my first radiation
treatment at 8:00AM. After getting back to the room I got sick again. At least
the nausea passed rapidly. Dad and I took a long 2+ hour walk around the hospital.
Figured we might as week get in as much freedom as possible before I go behind
double doors. Once my neutrophil's drop below 500 I will have to stay in isolation
until after the transplant and my neutrophil's are again above 500. My second radiation treatment of the day went well and I did not have any nausea. Gabe, a friend of mine came to visit this afternoon. He had a BMT in the same hospital 2 1/2 years ago. He has really been helpful in telling me like it is. Mom and Pat came to visit for a couple hours this afternoon. It was great seeing them. Well, was too good to be true and I got sick again after my 4:00PM treatment. Looking on the brighter side I only have two more treatments left. Ray came to visit tonight. |
4/16/99 |
-4 |
WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutrophil |
Well today was a pretty good day. I finished with Radiation Therapy
and only got sick twice. My sister Mindy came up on the train to visit today.
We must have walked 2 miles. It will not be long before I go into double door
isolation. I begin chemo tomorrow. It will be administered over a 4 hour period. They say I may get real sick but they will give me drugs to reduce it. Since my hair won't be with me very much longer, I gave myself a haircut. It actually was a lot of fun and Mindy and I tried on all my hats. If you want to see the haircut go to my temporary haircut gallery.
|
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4/17/99 |
-3 |
Well this is chemo morning. I am feeling anxious right now.
they are suppose to begin my chemo in 10 minutes. I am getting Benadryl right now to
be followed with cortozyn. It is suppose to make me drowsy. If the Benadryl
hits me like Monday I may just sleep through the chemo. Chemo has been pretty tough on Alison. Her blood pressure has been running very low (expected side affect). She is being monitored every 5 minutes. During her third ounce she finally had a raise back to an acceptable level. At 2:00 PM PST she is on the 4th and final ounce. She has a headache and has gotten sick only once during chemo so far. She is resting comfortably right now. All day yesterday was horrible, I was sick and had a headache. It was scary since my blood pressure started to drop. The lowest it got was 87/37. Later the in night I was pumped up with fluid. |
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4/18/99 |
-2 |
Today is better. It is a rest day, so no meds or treatment today. My mom and brother will come visit me today. So I am going to get out of bed and walk to the main hospital. Since I will soon be put into isolation. | ||
4/19/99 |
-1 |
I was put in Isolation this morning since my counts dropped.I was knocked out most of the day because the nurse gave me some Benadryl for nausea. They started to feed me through the I.V., since I'm unable to hold my food down. Then late afternoon Dr.Glader stopped in to say Hi, as well as Dr.Amylon. Dr.Amylon asked if I had any questions about the transplant, but most of my questions already have been answered. Later in the evening Ray came and watched some t.v. with me. | ||
4/20/99 |
0 |
Day Zero - My new Birthday This morning I vomited again
after breakfast. My Dad and brother stopped in my room before his harvest of the bone
marrow. He was nervous since this was his first time in surgery. After they get the bone
marrow they will send it to the lab, and later send it up to me. It will be given to me
like a blood transfusion. I will be groggy because they will give me Benadryl. Seth went down to surgery at 7:30 a.m. After he was pulled into the operating room at around 9:00, Dad came down to my room and we waited for news that he was coming out of the recovery room. Finally at 10:15 Dad got a page from Surgery that the harvest was completed and Seth was being moved to the recovery room. Dad went down to day surgery and met with Dr.Amylon. He came out of the operating room carrying the transplant. It will be a couple of hours until I receive the transplant. Since Seth and I have different blood types (he has AB+ and I have A+) they have to remove his Red Cells from the Marrow. He will then be transfused back his red cells and I will receive the remainder. After the transplant my blood type will change to AB+. Finally around 1:30 P.M. a lot of activity began. The Chaplain came in to give me a blessing and then Dr. Amylon arrived carrying the first 400 ml. of the transplant. I had been pre-meditated to receive the transplant. At 2:00 P.M. I was hooked up and they began to infuse the bone marrow. The transplant is done via a transfusion into my Hickman. A total of about 650ml were finally infused and I felt great. It was really exciting watching my new life being infused into me. Dad has been running back and forth between the day hospital and my room all day. Seth is quite week and has gotten sick. At 5:00 PM Dad and Seth arrived in the room. Seth was in a wheel chair and was quite sore. We visited for 1/2 hour and then they went home to put Seth to bed. Ray came to visit tonight and we had a wonderful visit. |
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| 4/21/99 | +1 | I woke up this morning and got sick. I felt pretty good and had a
nice visit from Dad and Seth. Mom, Pat and Mindy came to visit later in the day.
Mindy did not come in as she had sore throat and is afraid of infecting me with
something. Without an immune system I have to really be careful. I got sick a
couple of times today and began throwing up some blood. As terrible as this sounds
it is expected and things will get a lot worse before they get better. As the day progressed Alison began to feel weaker and weaker and more sick. They have given her something for her nausea and fell asleep. They have also hooked her up to her heavy medicine for pain. Things are really going to be tough for the next couple of weeks until the transplant begins engraftment. I have added pictures of the transplant to her alternate site under the Day Zero Gallery - |
||
| 4/22/99 | +2 | Alison was rather sick overnight and was vomiting blood. The
gave her some platelets overnight. To relieve the nausea they gave her a cocktail of
Benadryl and Phernegin at 1:30 AM and 6:30 AM. It has left her really drowsy and she
has been asleep most of the morning. We spoke with the Doctor this morning and she requested that they only give her the mild anti-nausea medication during the day and the other at night time. She has some mild mucosis in her mouth this morning. Alison got up for about 20 minutes at 11:00 AM and checked her e-mail for the first time in 24 hours and then climbed back into bed. She wants to get up around 1:00 pm and take a bath. |
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| 4/23/99 | +3 | WBC RBC HGB HCT MCV MCH MCHC RDW PLT Neutroph |
0.1 2.98 9.8 28.8 96.8 32.9 34.0 19.7 16 |
So far my day has been pretty good. I've thrown up so far only twice. Last night I had a temperature of 101, so they gave me some antibiotics. The doctors said it is normal to have a teperarure at this piont. Today Ray, my father and mom and step- father will be in to see me. I still have not been able to eat for the last couple of days, because it will not stay down. I just recieved a call from my Aunt Carol, she gave me her encouraging words and told me that I am in her prayers. Alison had two pints of blood today to pump up her Red count and received packed platletts this morning. Her mouth sores have begun to spread and is becoming very painful. They have upped her pain killer to help relieve the suffering. |
