The following is a video produced by the Amyloidosis Foundation. It is meant to increase awareness of the disease.
Amyloidosis Awareness from Cartoon Medicine on Vimeo.
Kevin
Wednesday, February 25, 2009
Tuesday, February 24, 2009
Study and sleep and, oh yes, eat.
Tomorrow is my second Organic Chemistry exam. I have been crazily studying all day except for the time I spent with Kevin for lunch, a surprise since I didn't think he would be done so soon today. I feel ready - we'll see. I felt a little sad when he left Monday morning and I couldn't go with him to his first day of the treatment process. Fortunately, his mom was available to be with him since the sedation would prevent him from driving. He is alone now but I will join him tomorrow after my exam. It's not until the afternoon so I will get there as soon as I can.
As much as I could do without all the necessary studying, I really am enjoying all that I am learning in O-Chem. The class is so time consuming that my Nutrition class seems so easy. I do count down the weeks when my time can be more focused on Kevin, and my children (even married ones) and my house (it's getting a little disorganized). Oh, well. A few piles never hurt anyone, right?
Barbie
Day -17 Health Score 81
Last night I was very tired from the drugs and my neck was very sore, especially over the site where the Hickman catheter is tunneled under the skin. However, today it is much improved. It does not hurt to turn my neck. Of course, the advantage is that my frequent blood samples can be taken directly from the catheter. I drove my mom home this morning. I the had lunch with Barbie and drove back. I was feeling a bit pensive, so I went to the beach in Pacifica to watch the sunset. I love the sound of waves crashing on the beach. It made for a pleasant evening.
Kevin
Monday, February 23, 2009
Straight for the jugular
Day -18 Health Score 83
Every institution has its own style. University hospitals move at a certain pace because of their size and hierarchical complexity. Private hospitals tend to market their flexibility and efficiency. Kaiser has superior integration and collegiality. The VA moves by the weight of it own inertia carrying a gravitational field relative to the behemoth that it is. The Mayo Clinic is unique in its ability to fast track a diagnostic work up while greeting you with a sport coat, tie and smile at every visit. What is not unique is the caliber of physicians and nurses at each of these institutions. There are great doctors everywhere (just as there are those with poor bed-side manners equally distributed) One should not judge the quality of medical care by how long you wait or whether the front desk just sees you as another warm body.
We waited a lot today. But that's OK.
I picked up my mom at 4:00 AM to drive to Stanford.
I received my first Neupogen shot this morning and then went to the ATP (Ambulatory Treatment and Procedures) Once finally in the fluoroscopy room, the nurse asked what style of music I wanted. He programmed Coldplay into Pandora.com. Then he gave me some wonderful chemicals Fentanyl and Versed. I felt just fine as they tunneled the 12 French Hickman catheter over my right clavicle and into the internal jugular vein. The doctor had a little trouble getting into the inferior vena cava due to the distortion of the anatomy where my donated heart is connected to my native IVC. But, alas, the 0.035 angled glide wire with the 'magic' Terumo tip one again saves the day. (This is what I rely on to get past obstructed stones in the ureter). Also, I am so happy when MD's buffer their lidocaine with sodium bicarb. It doesn't burn so much. Now I have this catheter hanging out of me for the next few months (Banned from the hot tub).
I am staying at yet another Residence Inn here in Mountain View. They have experience with BMT patients and their strict precautions. Overall, today went fine; I am just left with a sore stiff neck. (No longer hard-hearted, now just stiff-necked).
Kevin
Every institution has its own style. University hospitals move at a certain pace because of their size and hierarchical complexity. Private hospitals tend to market their flexibility and efficiency. Kaiser has superior integration and collegiality. The VA moves by the weight of it own inertia carrying a gravitational field relative to the behemoth that it is. The Mayo Clinic is unique in its ability to fast track a diagnostic work up while greeting you with a sport coat, tie and smile at every visit. What is not unique is the caliber of physicians and nurses at each of these institutions. There are great doctors everywhere (just as there are those with poor bed-side manners equally distributed) One should not judge the quality of medical care by how long you wait or whether the front desk just sees you as another warm body.
We waited a lot today. But that's OK.
I picked up my mom at 4:00 AM to drive to Stanford.
I received my first Neupogen shot this morning and then went to the ATP (Ambulatory Treatment and Procedures) Once finally in the fluoroscopy room, the nurse asked what style of music I wanted. He programmed Coldplay into Pandora.com. Then he gave me some wonderful chemicals Fentanyl and Versed. I felt just fine as they tunneled the 12 French Hickman catheter over my right clavicle and into the internal jugular vein. The doctor had a little trouble getting into the inferior vena cava due to the distortion of the anatomy where my donated heart is connected to my native IVC. But, alas, the 0.035 angled glide wire with the 'magic' Terumo tip one again saves the day. (This is what I rely on to get past obstructed stones in the ureter). Also, I am so happy when MD's buffer their lidocaine with sodium bicarb. It doesn't burn so much. Now I have this catheter hanging out of me for the next few months (Banned from the hot tub).
I am staying at yet another Residence Inn here in Mountain View. They have experience with BMT patients and their strict precautions. Overall, today went fine; I am just left with a sore stiff neck. (No longer hard-hearted, now just stiff-necked).
Kevin
Friday, February 20, 2009
Moving Forward
Day -20 Health Score 86
Today I met with Dr Arai one final time before starting stem cell stimulation. This was to review all of the results from the re-staging process. Everything looks fine, so we will proceed on Monday. I also saw a specialist from infectious disease who will assist in the effort to avoid or treat infections. They take everything seriously. I mentioned the mild congestion that I have, which is common this time of year which then led to a nasal swab to rule out a viral upper respiratory infection. I am not complaining. I fully support their vigilance. The 300 mile drive (round trip), however, is wearing me out. Time for bed.
Kevin
Today I met with Dr Arai one final time before starting stem cell stimulation. This was to review all of the results from the re-staging process. Everything looks fine, so we will proceed on Monday. I also saw a specialist from infectious disease who will assist in the effort to avoid or treat infections. They take everything seriously. I mentioned the mild congestion that I have, which is common this time of year which then led to a nasal swab to rule out a viral upper respiratory infection. I am not complaining. I fully support their vigilance. The 300 mile drive (round trip), however, is wearing me out. Time for bed.
Kevin
Thursday, February 19, 2009
Be Patient
Day -22 Health Score 87
I had decided to do daily entries on the days that I am receiving treatment and preparing for the stem cell transplant. I believe you get a more honest sense of what is happening if it is not filtered through the 'retrospectoscope'. Day 0 is March 13th, the day I get the transplant. I feel this might help someone going through the same process to know what to expect. The health score is how I am feeling on any given day (physically, emotionally etc...) This is quite subjective. The scale is from 1 - 100 with 1 being dead and 100 signifying perfect health. For instance, if I were severely nauseated and unable to eat, but could still get around, drive and function; that would be 50-60
If I were in bed, unmotivated to do anything, with no energy; that would be 40-50. (However, one must subtract 8 points for unbridled optimism). If I were able to boogy board, bicycle 100 km, backpack 8 miles or do a ureteroscopic Holmium laser lithotripsy, that would put me at 100. So 87 is pretty good.
The day began well as I drove down Sierra College Blvd on my 150 mile trip to Stanford. As I looked eastward over the town of Loomis, the sun was just coming over the Sierras, the broken clouds being illuminated with a myriad of colors: multiple shades of grey, blue, peach and pink. The cherry blossoms adding a responding cloud of pink from below. It felt like a glorious Spring morning right after rain. Californians take Spring for granted. A Spring day can occur here any time of the year. In Connecticut, Spring doesn't arrive until May, making it highly anticipated. The trees and ground cover are bare in New England from November through April. The green is replaced by gray, black and brown. People flock to New England to see the colors of Fall; which are spectacular. But few outsiders realize that the colors of Spring are equally vibrant and diverse; and much more appreciated. They signify the new life arising after months of dreariness. Becoming well, after months (or year) of illness, is similar to the feeling that Spring gives; a new beginning, a new hope.
Then I arrived at Stanford and became the patient. First I went to the BMT unit on E1 in the main hospital to sign all of my consents. Informed consent is the process where all of the possible bad things that can happen are explained in detail. Everyone signs, assuming it won't happen to them. And then some patients are shocked and angry when bad things do occur. Complications don't bother me as long as I know that they are expected and I can overcome them. I repeat my mantra to myself 'prepare for the worst, hope for the best'. With BMT nausea, fatigue, hair loss and painful mouth sores are common. The most feared complication is infection which can be fatal. Many precautions are taken to prevent infections.
I then went to a class for training on the care of the Hickman Catheter that will be placed on Monday. My appointment was for 2:00 PM. At 3:00 I asked the receptionist what the delay was and he said that they were very busy and that no rooms were available. At 3:15 the assistant took me in the back hallway to get my vital signs (for a class?) and had me watch a video. I asked if she was going to put me in a room and she said it was being cleaned. The nurse came to begin teaching at 3:45. I asked if we were going to a room for teaching and she informed me (with some irony, I thought) that someone else had taken the room. I share this because I know that thousands of patients experience this every day. Some days things don't go as planned; that's why we're called patients.
When some serious surgical mishap is investigated, often the root cause is a series of simultaneous mistakes. The system is built with enough backup to handle two maybe three simultaneous mistakes, but on the rare occasion that 4 or 5 occur, there is a bad outcome. The opposite can also occur. Four or five fortuitous events can simultaneously occur causing an equally rare but beneficial outcome. The benefit to me being the recipient of a healthy new heart. (The odds were stacked against me). Therefore, I will be patient and not complain about minor bumps in the road. Getting angry only hurts oneself. All concern left me as I drove home to witness an equally beautiful California sunset and was reminded that every new day is a new day to get it right.
Kevin
I had decided to do daily entries on the days that I am receiving treatment and preparing for the stem cell transplant. I believe you get a more honest sense of what is happening if it is not filtered through the 'retrospectoscope'. Day 0 is March 13th, the day I get the transplant. I feel this might help someone going through the same process to know what to expect. The health score is how I am feeling on any given day (physically, emotionally etc...) This is quite subjective. The scale is from 1 - 100 with 1 being dead and 100 signifying perfect health. For instance, if I were severely nauseated and unable to eat, but could still get around, drive and function; that would be 50-60
If I were in bed, unmotivated to do anything, with no energy; that would be 40-50. (However, one must subtract 8 points for unbridled optimism). If I were able to boogy board, bicycle 100 km, backpack 8 miles or do a ureteroscopic Holmium laser lithotripsy, that would put me at 100. So 87 is pretty good.
The day began well as I drove down Sierra College Blvd on my 150 mile trip to Stanford. As I looked eastward over the town of Loomis, the sun was just coming over the Sierras, the broken clouds being illuminated with a myriad of colors: multiple shades of grey, blue, peach and pink. The cherry blossoms adding a responding cloud of pink from below. It felt like a glorious Spring morning right after rain. Californians take Spring for granted. A Spring day can occur here any time of the year. In Connecticut, Spring doesn't arrive until May, making it highly anticipated. The trees and ground cover are bare in New England from November through April. The green is replaced by gray, black and brown. People flock to New England to see the colors of Fall; which are spectacular. But few outsiders realize that the colors of Spring are equally vibrant and diverse; and much more appreciated. They signify the new life arising after months of dreariness. Becoming well, after months (or year) of illness, is similar to the feeling that Spring gives; a new beginning, a new hope.
Then I arrived at Stanford and became the patient. First I went to the BMT unit on E1 in the main hospital to sign all of my consents. Informed consent is the process where all of the possible bad things that can happen are explained in detail. Everyone signs, assuming it won't happen to them. And then some patients are shocked and angry when bad things do occur. Complications don't bother me as long as I know that they are expected and I can overcome them. I repeat my mantra to myself 'prepare for the worst, hope for the best'. With BMT nausea, fatigue, hair loss and painful mouth sores are common. The most feared complication is infection which can be fatal. Many precautions are taken to prevent infections.
I then went to a class for training on the care of the Hickman Catheter that will be placed on Monday. My appointment was for 2:00 PM. At 3:00 I asked the receptionist what the delay was and he said that they were very busy and that no rooms were available. At 3:15 the assistant took me in the back hallway to get my vital signs (for a class?) and had me watch a video. I asked if she was going to put me in a room and she said it was being cleaned. The nurse came to begin teaching at 3:45. I asked if we were going to a room for teaching and she informed me (with some irony, I thought) that someone else had taken the room. I share this because I know that thousands of patients experience this every day. Some days things don't go as planned; that's why we're called patients.
When some serious surgical mishap is investigated, often the root cause is a series of simultaneous mistakes. The system is built with enough backup to handle two maybe three simultaneous mistakes, but on the rare occasion that 4 or 5 occur, there is a bad outcome. The opposite can also occur. Four or five fortuitous events can simultaneously occur causing an equally rare but beneficial outcome. The benefit to me being the recipient of a healthy new heart. (The odds were stacked against me). Therefore, I will be patient and not complain about minor bumps in the road. Getting angry only hurts oneself. All concern left me as I drove home to witness an equally beautiful California sunset and was reminded that every new day is a new day to get it right.
Kevin
Wednesday, February 18, 2009
laugh out loud
O.K. so now I am a little shy at all the attention I got from my last entry. Never meant to sound so deep, but sometimes it just comes out. Thank you for the good wishes, the uplifting comments and the joke. (Keep them coming, Brian!). They make me smile and lol. I used to think that meant 'lots of love' when I first started texting my girls. They could never figure out why I was lol'ing' at the end of every entry. We had a good laugh when they told me that it meant 'laugh out loud'. The only joke I know and sometimes mess up is the one I learned when I was pregnant with Jeremy and Samuel. It goes like this.
What did the mexican fireman name his twin boys?
Jose and Hose B.
I bet you wonder how I could mess that up, but I do.
We're gearing up emotionally and logistically for next week. It's all going to be fine. My next exam in Organic Chem is one week away. Ugh...there is so much to remember!!!
I felt a little guilty last night that I wasn't going with Kevin today to Stanford for an appointment and Hickman Catheter care class I only felt guilty until I stepped into Nutrition and Chem and quickly moved into student mode where the outside world shuts off for the day. Monday Kevin will leave on his own for Stanford and I will join him on Wednesday night or Thurs morning. He'll be in a hotel during the Neupogen in Apheresis stage (monday - friday) and then he will be admitted on Friday night for stem cell collection.
Kevin keeps me going...there isn't anything he doesn't think I can do.
Barbie
Monday, February 16, 2009
Six Months
August 16, 2008
Valentines Day, February 14, 2009Today marks six months since I received an new heart and a new life. Fittingly, my favorite candy bar is Rocky Road and there clearly have been a few bumps along this path, but overall, I feel wonderful. When the decision was made a few weeks ago to proceed with the stem cell transplant, I knew that there would be much to do to prepare for this new challenge. Tests, blood-work, education, logistical planning for Barbie and Caitlin and getting myself psychologically prepared. After considering this daunting task, I exclaimed to the family, "We're going to Disneyland". Since I will be down for at least the next three months, I figured there is no time better than the present.
Caitlin, Rebecca, Barbie and I drove down on Thursday and stayed at the Hilton Suites in Anaheim (I love to Priceline; we got a great deal) We had a wonderful time. It did rain on Friday, but cleared by Friday evening. Everyone was cold and tired by 4:00 PM so we went back to the hotel. I kept saying that I was going to go back to Disneyland that night, but they all thought that I was joking. I assumed they knew I was going back after I dropped them off after dinner, but they just thought I was slow getting back to the room. After looking for me for 45 minutes, a very concerned Barbie tried to call me, but I was on the Indiana Jones ride and couldn't hear a thing. Finally, I got the message and called to reassure her that I was alright.
Saturday, Valentines Day, the weather was clear and we took it a little slower. I did, however, go on California Screamin' three times. (A seriously awesome roller coaster). Not having nerves to my transplant has the advantage that by the time my heart realized that it was moving upside-down at 60 MPH, the ride was over. My heart-rate never went up.
I am not done making memories. There is so much left to learn. The last six months has taught me things that I could not have learned any other way. While I was on the ride called 'Soarin' Over California' a flood of memories came over me in a wash of emotion as I realized that I have been every place depicted on the screen. Whether it be backpacking through Yosemite as a Boy Scout or surfing in La Jolla during medical school, I have a lifetime of vivid memories that I can checkout, like a favorite book from the library, and re-experience the joy anew.
This weekend reminded me of the three words that continuously weave themselves through my consciousness: Gratitude, Hope and Joy. Gratitude for gifts and experiences of my past that have shaped whom I have become, hope for the future that lies ahead and joy in the beauty that surrounds and fills me in every moment.
Kevin
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