kayni's bone marrow
Saturday, February 21, 2015
Monday, February 9, 2015
Thursday, January 22, 2015
Things Are Looking Up
You can read my latest update HERE.
Sunday, January 11, 2015
First Re-Birthday!
Please click HERE, to read about my post regarding my First Re-Birthday!
Tuesday, October 21, 2014
Its Day +282!
I am still here. Although I've been so quiet, no news is good news.
There are days I still can't believe I am here.
I've asked my husband, several times, if there were moments during my treatment that he thought I wouldn't make it. He'd say, "No. I knew things will be alright and that you'll get through the transplant okay." That's my husband, between the two of us, he is the optimist. I tend to be the whiner and the pessimist. Sometimes I just whine just because I can. Honestly, after my transplant, I feel like I'm adjusting to a new body. It could just be psychological.
This is my last week with Prednisone. My skin graft-vs-host disease seemed to have responded. I am now only taking the pill every other day, and after two weeks of that regimen, doctor recommended I should stop taking it completely. Prednisone needs to be tapered as it does have side-effects, and I am starting to feel them now. Since the tapering started, I've been feeling crappy, have less energy and sleepy at most times of the day. It's been a rough two weeks. My hopes are that even without the steroid, my skin gvhd will not flare up.
Next week, I'm going to see my doctor for my follow-up check-up. I still have my monthly blood work, but I only see my doctor now every two months. It feels great that my life does not revolved around the hospital and blood work anymore.
I am recovering very well except that I've been getting pain attacks below my right rib. Since my doctor knew that I have gallstones in addition to a "lazy gallbladder" diagnosis before my transplant, she suspects that they're the culprit. She suggested that I may need to get it removed. Health challenges keep coming I tell ya.
Next week, I'll have my lungs tested and will also have an ultra-sound for my gallbladder.
I am not sure when the surgery will take place, but boy I am scared.
There are days I still can't believe I am here.
I've asked my husband, several times, if there were moments during my treatment that he thought I wouldn't make it. He'd say, "No. I knew things will be alright and that you'll get through the transplant okay." That's my husband, between the two of us, he is the optimist. I tend to be the whiner and the pessimist. Sometimes I just whine just because I can. Honestly, after my transplant, I feel like I'm adjusting to a new body. It could just be psychological.
This is my last week with Prednisone. My skin graft-vs-host disease seemed to have responded. I am now only taking the pill every other day, and after two weeks of that regimen, doctor recommended I should stop taking it completely. Prednisone needs to be tapered as it does have side-effects, and I am starting to feel them now. Since the tapering started, I've been feeling crappy, have less energy and sleepy at most times of the day. It's been a rough two weeks. My hopes are that even without the steroid, my skin gvhd will not flare up.
Next week, I'm going to see my doctor for my follow-up check-up. I still have my monthly blood work, but I only see my doctor now every two months. It feels great that my life does not revolved around the hospital and blood work anymore.
I am recovering very well except that I've been getting pain attacks below my right rib. Since my doctor knew that I have gallstones in addition to a "lazy gallbladder" diagnosis before my transplant, she suspects that they're the culprit. She suggested that I may need to get it removed. Health challenges keep coming I tell ya.
Next week, I'll have my lungs tested and will also have an ultra-sound for my gallbladder.
I am not sure when the surgery will take place, but boy I am scared.
Friday, July 25, 2014
Six-Months Post-BMT
"Yes, you can eat seafood and have a beer too!"
Could that be true?
I've been avoiding all alcoholic drinks for the past eight years because of my low platelets; Alcohol impairs the ability of the bone marrow to produce platelets, since my platelets were so low, alcoholic drinks were prohibited. Today, Dr. D finally said I could have one.
Am I dreaming? It'sgood great news, but I'm not jumping to go have a drink right away. I'm just glad that my platelets are normal. In fact, all my counts are normal and these results are worth celebrating.
My actual visit with Dr. D took place late in the afternoon, but I can't help but start with the good news.
Today was my six-month post-BMT bone marrow biopsy follow-up. The biopsy went well, as I opted for sedation. At least, the anxiety and nervousness were controlled. But even with sedation, when that needle punctures the hip bone, the suction/pressure is still painful. We'll know the results next week; I think.
After my biopsy, Kepi and I had lunch at the hospital cafeteria. I was famished as I was fasting for the bone marrow biopsy. The cafeteria always brings back a lot of memories while I was confined at the hospital... After lunch, we proceeded for my pulmonary function test (PFT). The PFT went well and my lung's performance and capacity are up at 98-100% now. It's a great improvement from my last test taken in March.
My six-month post BMT check-up went well. My back and hip are a bit sore from the procedure, but my heart is truly happy.
Tomorrow, Kepi and I will celebrate - take a trip to Virginia perhaps or go see a movie. It doesn't matter what we do. Today, we're happy.
Could that be true?
I've been avoiding all alcoholic drinks for the past eight years because of my low platelets; Alcohol impairs the ability of the bone marrow to produce platelets, since my platelets were so low, alcoholic drinks were prohibited. Today, Dr. D finally said I could have one.
Am I dreaming? It's
My actual visit with Dr. D took place late in the afternoon, but I can't help but start with the good news.
Today was my six-month post-BMT bone marrow biopsy follow-up. The biopsy went well, as I opted for sedation. At least, the anxiety and nervousness were controlled. But even with sedation, when that needle punctures the hip bone, the suction/pressure is still painful. We'll know the results next week; I think.
After my biopsy, Kepi and I had lunch at the hospital cafeteria. I was famished as I was fasting for the bone marrow biopsy. The cafeteria always brings back a lot of memories while I was confined at the hospital... After lunch, we proceeded for my pulmonary function test (PFT). The PFT went well and my lung's performance and capacity are up at 98-100% now. It's a great improvement from my last test taken in March.
My six-month post BMT check-up went well. My back and hip are a bit sore from the procedure, but my heart is truly happy.
Tomorrow, Kepi and I will celebrate - take a trip to Virginia perhaps or go see a movie. It doesn't matter what we do. Today, we're happy.
Wednesday, July 2, 2014
Aftershocks
There's a lot of misconceptions about my bone-marrow transplant (BMT) and my life after it. Some people I know think it's surgery and that after a BMT everything goes back to normal.
No and No.
It's not surgery, not even close. It's more of a long drawn out transfusion. Heck, it is transfusion except that that bag is filled with blood and marrow. The infusion is long - mine took six hours to infuse. Day 0, referred as the D-Day of transplant, was long and tedious. I spent my day waiting and sleeping in my room. I also had mixed emotions - worry, nervousness, restlessness and fatigue because there's always a chance that my donor would back out. I could only give a sigh of relief when the delivery lady arrived with a huge bag of marrow donation. I was in tears when I saw my donor's bag of marrow. I can't tell if those were tears of joy or tears of sadness. Joy because someone, a complete stranger, donated his marrow for me and sadness because I still couldn't comprehend the magnitude of what I am and are about to go through - which takes us to life after a BMT.
What is normal after a BMT? This is a tough question because in my experience, normal is not "normal" anymore - physically, emotionally and psychologically.
No and No.
It's not surgery, not even close. It's more of a long drawn out transfusion. Heck, it is transfusion except that that bag is filled with blood and marrow. The infusion is long - mine took six hours to infuse. Day 0, referred as the D-Day of transplant, was long and tedious. I spent my day waiting and sleeping in my room. I also had mixed emotions - worry, nervousness, restlessness and fatigue because there's always a chance that my donor would back out. I could only give a sigh of relief when the delivery lady arrived with a huge bag of marrow donation. I was in tears when I saw my donor's bag of marrow. I can't tell if those were tears of joy or tears of sadness. Joy because someone, a complete stranger, donated his marrow for me and sadness because I still couldn't comprehend the magnitude of what I am and are about to go through - which takes us to life after a BMT.
What is normal after a BMT? This is a tough question because in my experience, normal is not "normal" anymore - physically, emotionally and psychologically.
- My skin is dry and my skin gets sunburnt easily due to chemo. I have to wear sunscreen for life.
- My stomach is super sensitive, so I have to be very careful with my meals. I seem to have developed Lactose intolerance. Doctor said my donor might have passed it to me.
- I have a mild skin Graft-vs-host disease.
- I get tired easily. Fatigue is a word I often feel.
- My emotions are on a roller coaster ride. Sometimes I feel happy and out of nowhere, I feel sad and depressed. Fear sometimes grips me. Anxiety comes attacking in the morning, day or night.
- I have no patience and I tend to snap at times.
- I am very sensitive, and there are times I cry for no reason.
- I forget a lot of things. Doctor said it's chemo brain.
- I also suffer from lack of concentration. Reading a book is a challenge now compared to before my BMT that I could seat all afternoon and finished a novel.
- There's a lingering feeling of loss - loss of time, loss of self, loss of who I am and what I want to be.
I am not sure if these are temporary changes or will they stick with me forever.
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