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I wanted to share a tidbit of good news. Every week I have a nurse’s visit at Sloan-Kettering so they can moniter by blood counts to determine how often I need blood transfusions. Specifically they are looking at my hemoglobin level. A normal level is between 12 and 16 g/dl and when I drop below 8 I typically get a transfusion. Well I haven’t had a transfusion since the week before my vacation (I think 8/7) and my hemoglobin this morning was holding steady at 9.1. This is great news since every blood transfusion has an inherent risk. Hopefully I can go several more weeks without needing one. Not a bad way to start my day.
CaringBridge is this great site that a lot of families use to update their friends and families (similar to what I’m doing here.) Since this all began I have been following Eric Trowbridge’s story on CaringBridge. He is a high school student with MDS and I found him when I was googling for answers. I don’t know him and yet reading his blog posts is really comforting for me- especially since he is two or three steps ahead of me in this process and his health is a bit more precarious than mine.
All my good thoughts go out towards him. If you want to check out his site here is the link.
Hi all-
I’ve been getting a lot of questions about what exactly happens in a stem cell transplant. You can read all about it here but here are the important details.
I’m having an Allogenic Transplant which means my new stem cells are coming from my brother, rather than from myself (Autologous transplant).
I will check into the hospital for a week of high-intensity chemotherapy to destroy my immune system.
Then I will get my new stem cells via IV.
THEN the hard part starts.
“Over the following days and weeks, the transplanted stem cells in the graft migrate to the marrow space in the patient’s bones, where they gradually begin to produce blood and immune system cells.
Between two and three weeks after the transplant, physicians should begin to detect cells of the donor’s type in the patient’s bloodstream. As time passes, a successful graft is able to produce the full range of blood components including red blood cells (erythrocytes), white blood cells (leukocytes, including polys or neutrophils), and platelets.
During the days just after transplantation, patients need a great deal of medical support including transfusions of irradiated blood products like platelets and red cells. Patients also receive antibiotics to prevent and treat infections. These include bacterial, viral, and fungal infections, which are most likely to occur in the first three months after transplantation. Patients are also vulnerable to complications of the preparative regimen, which may require specific treatment.
Patients generally remain in the hospital for several weeks after the transplant. During this time precautionary measures protect the patient from infection by requiring people who enter the room to wear protective gloves and masks, and to wash their hands with antiseptic soap. Sometimes people entering the room need to cover their clothing with clean, disposable gowns. Fresh fruit, flowers, plants, or cut flowers are barred from the patient’s room, as these can carry disease-causing molds and bacteria.”
Once the graft takes and my immune system begins to recover I will move home to NJ to recover. I have to avoid crowds during that time but visitors are more than welcome:)
If you have any questions just let me know.
Hi all-
I had a good nurse visit this morning. My hemoglobin is holding at 9.4 which means that last transfusion is doing its job and I probably won’t need another for at least two or three weeks. This is great news since every transfusion has an inherent risk and, therefore, the less I can get the better.
Also, something interesting I learned is that with each transfusion a deposit of iron is left in the body which overtime can cause iron overload. According to a random internet site “Normal body iron stores are 3-4 grams. Each unit of transfused red cells contains 200-250 mg of iron. Thus, a patient who receives 2 units of blood each month would accumulate approximately 5-6 g of extra iron in one year.” Of course modern medicine has a great fix for this, iron chelation. It’s a relatively simple way to get rid of the extra iron in your body. Luckily I will probably never need chelation since it takes a year or two to build up that much iron and my transplant will be occuring this fall. Anyways, probably more information than you need.
xo,
b
Relaxing vacation.
All-clear from the dentist.
Getting organized at work. (Clearly, this is going to take some time.)
Buy lots of comfortable lounging clothes (this is the fun part.)
Finding a wig (this, not so much fun.)
Hi all- just a quick update from spa-land to let you know that my insurance has come through and it looks like I will be able to get the transplant done at Sloan-Kettering in NYC. This is a huge relief because it means I will get to stay near my friends and family and because I really trust my doctor at Sloan.
No timeline is definite but it sounds like this could be happening as soon as the end of September, begining of October, which is both totally frightening and quite a relief. The less time I have to worry the better, is my opinion. I’d like to get on with my life as soon as possible so I’m glad I don’t have to wait 6 months for a transplant.
Spa life is grand and I think its about time I head over to yoga class and then the steam room 
Lots of love,
B
Back at work today and then tomorrow Mindy comes to town! I’m so excited because I haven’t seen her since May and because we are headed to The New Age Health Spa for some much needed relaxation and catch-up time. Nothing like your best friend to make you feel better.
So one more day of work and then vacation here I come! Can you believe I haven’t taken a week off work since Feb 07?
Yesterday was a long day at Sloan-Kettering waiting for a blood transfusion. But Jaime and my Aunt Brooke provided great distraction:)
Have a great weekend.
xo
b
Hi all-
I’m sitting in the waiting room for my blood transfusion and I saw a handy pamphlet on how you all can become donors. To find out more check out this link. If you are in NYC you can donate at:
Sloan-Kettering’s Schwarz Building Lobby
1250 1st Avenue between 67th and 68th sts Read the rest of this entry »
My brother Dan is an HLA match for me. This is pretty incredible news and will make the whole transplant process a lot easier.
Hurray for siblings!
More news on timing to come.
xo
b
