Mike and Cousin Hunter hanging out at the Rodeo Benefit for me
Here's Me, Mike, and Juicy!
Tuesday, December 28, 2010
Day -1
After this I'm going to need a brain transplant because I keep forgetting my password to this site. Tomorrow is Day 0 or TRANSPLANT DAY. I'm nervous, anxious, excited, and more to get to this day. My cousin Liz is here today to get ready for her end of the process when she gets knocked out and donates her healthy marrow to me. I guess all of my bad marrow is now gone as I've gone through 4 days of induction chemo before today. I'm super grateful to Liz for stepping up and doing this somewhat painful process for me. She really is giving me a new opportunity for life and hopefully many more years. It's an amazing thing and amazing that science and medicine has gotten many patients through this same process. MD Anderson does 700 transplants a year! Amazing when you think about that - almost 2 every day.
I've been feeling okay. The biggest issues are nausea and the pneumonia everyone's worried about. The nausea sucks and I just tossed my cookies again after I ate lunch. I can eat some days but not others. The pneumonia is freaking everyone out because I started coughing again on Saturday and my Mom came down with something last Thursday but was coming around here until Monday when the Infectious Disease doctor essentially kicked her out until she feels better. Dad is down here too but now he's got the cold and I haven't seen him for a couple of days.
So the word is that Liz will have her procedure around 8am tomorrow morning and then sometime after I lunch I'll receive her fresh marrow through a central line (IV), which is kind of like a blood transfusion. I think it takes 1-2 hours for the whole process and I might feel a little sleepy. I just hope this is the cure I need and that it works for a long, long, long time.
I've been feeling okay. The biggest issues are nausea and the pneumonia everyone's worried about. The nausea sucks and I just tossed my cookies again after I ate lunch. I can eat some days but not others. The pneumonia is freaking everyone out because I started coughing again on Saturday and my Mom came down with something last Thursday but was coming around here until Monday when the Infectious Disease doctor essentially kicked her out until she feels better. Dad is down here too but now he's got the cold and I haven't seen him for a couple of days.
So the word is that Liz will have her procedure around 8am tomorrow morning and then sometime after I lunch I'll receive her fresh marrow through a central line (IV), which is kind of like a blood transfusion. I think it takes 1-2 hours for the whole process and I might feel a little sleepy. I just hope this is the cure I need and that it works for a long, long, long time.
Friday, November 26, 2010
Happy Turkey Day
It's been a little while since I've blogged, but I forgot my password and it took us some time to figure out how to reset it. Now I'm back just in time to wish you a Happy Thanksgiving. We're here in Houston celebrating with Mike's family including his mom Gail, Aunt Pam, and of course Uncle Steve and Aunt Valerie along with his cousins Jason, Travis, and Abbe. His brother Brian and his girlfriend flew up for the occassion too. It's nice because it's been a while since we've had a holiday with some of his family. My family went to my Grandma's today.
I'm extremely aware today of all the things I am grateful for: family and friends who love me and Mike. The amount of support and love we have received from everyone has been amazing. Not only has my cousin Gina thrown a rodeo and a BBQ in my honor to raise money (nearly $10k!) and sign people up to be marrow donors, but she's driven four hours to see me. She's so awesome and I love her so much. I wish I could spend more time with her because she is just so energetic and being around her always makes me happy. We just laugh hysterically each time we see each other. I'm also extremely grateful for my cousin Liz: my half match donor. I literally owe her my life. For her to sign up to donate marrow for me (a somewhat painful process), is something I will never forget. I had a feeeling we would be a match just based on some genetic similiarities, but I honestly had no idea. She is amazing.
I'm also grateful and ecstatic that my brother Michael and his wife Shaunda are expecting twins (on my birthday!). When he told me, the first thing that popped into my head was the "Circle of Life" from the Lion King when they held up the baby cub. Hearing the fantastic news gives me a lot of hope and a surge of energy that I so dearly need to get through the next few months. I'm so excited to meet the little ones and they're expecting a boy and a girl! I just can't wait to be an aunt and spoil the little ones as much as possible.
I finally have my transplant schedule. After battling pneumonia and waiting weeks to recover from that horrible episode, we met with the transplant doctor on Tuesday and now my schedule is completely booked up. We've been lucky the past few weeks and only had to travel to the doctors once a week instead of 2-3 times a week, but that luxury is gone. Next week I meet with doctors and have a whole bunch of tests to make sure my body is able to handle the transplant (plus to see how many blasts I have in my marrow now). Next Sunday (12/5), I check into the hospital to begin my pre-transplant activities and to start my 30 days of isolation. On 12/14, I'm scheduled to start the transplant - otherwise known as Day 0. After that, the next 100 days are critical and it's going to be intense. I'm nervous and scared, but it's what I came to Texas to do so I'm anxious to get the show on the road. However, having pneumonia and still coughing even today scares the crap out of me. Hopefully, it will not complicate things any more than it already has.
I'm extremely aware today of all the things I am grateful for: family and friends who love me and Mike. The amount of support and love we have received from everyone has been amazing. Not only has my cousin Gina thrown a rodeo and a BBQ in my honor to raise money (nearly $10k!) and sign people up to be marrow donors, but she's driven four hours to see me. She's so awesome and I love her so much. I wish I could spend more time with her because she is just so energetic and being around her always makes me happy. We just laugh hysterically each time we see each other. I'm also extremely grateful for my cousin Liz: my half match donor. I literally owe her my life. For her to sign up to donate marrow for me (a somewhat painful process), is something I will never forget. I had a feeeling we would be a match just based on some genetic similiarities, but I honestly had no idea. She is amazing.
I'm also grateful and ecstatic that my brother Michael and his wife Shaunda are expecting twins (on my birthday!). When he told me, the first thing that popped into my head was the "Circle of Life" from the Lion King when they held up the baby cub. Hearing the fantastic news gives me a lot of hope and a surge of energy that I so dearly need to get through the next few months. I'm so excited to meet the little ones and they're expecting a boy and a girl! I just can't wait to be an aunt and spoil the little ones as much as possible.
I finally have my transplant schedule. After battling pneumonia and waiting weeks to recover from that horrible episode, we met with the transplant doctor on Tuesday and now my schedule is completely booked up. We've been lucky the past few weeks and only had to travel to the doctors once a week instead of 2-3 times a week, but that luxury is gone. Next week I meet with doctors and have a whole bunch of tests to make sure my body is able to handle the transplant (plus to see how many blasts I have in my marrow now). Next Sunday (12/5), I check into the hospital to begin my pre-transplant activities and to start my 30 days of isolation. On 12/14, I'm scheduled to start the transplant - otherwise known as Day 0. After that, the next 100 days are critical and it's going to be intense. I'm nervous and scared, but it's what I came to Texas to do so I'm anxious to get the show on the road. However, having pneumonia and still coughing even today scares the crap out of me. Hopefully, it will not complicate things any more than it already has.
Thursday, November 4, 2010
Roller Coaster Week
I went to bed Sunday with a slightly scratchy voice, which I attributed to allergies but my body had other plans for me and Monday began the downward sprial. I woke up at 2:30 with a headache so Mike suggested I take my temperature and it was 100.7 - close to a fever but not necessarily something that would get me in the hospital. About 45 minutes later Mike woke me up so I could take my temperature: 103.9. Now THAT necessitated a trip the MD Anderson ER. We quickly packed up 2-3 days worth of clothes in a sleepy haze. My brother was leaving on Monday we had to wake him up so we could figure out how to get to the airport. Luckily, Mike's Mom was still there because she was also driving back to Austin so I suggested she drive him, which she did, and we headed to the ER at 4am. Mike sped through the darkened town and we made good time getting here (no traffic!). Unfortunately, we could not find the MD Anderson ER very easily to we circled the streets several times -finding the Children's hospital ER, the Methodist Hospital ER and every other ER but ours. We finally found it and I checked in. They immediately hooked me up and drew blood. They were admitting me, but it took them 16 hours to find me a bed. Yikes! I was pretty miserable and their hard-as-a-rock bed didn't help.
After I finally got moved to the 12 floor, my day didn't get any better. I spent the first few days fighting fevers, nausea, and a teerrible cough - which gave me fevers and the urge to puke. It was pretty rough and I didn't sleep well because of the coughing spasms, which went on and on for about 20 minutes. They gave me 4-hour and 6-hour cough medicine, which worked for the first two hours and then just stops working. On Tuesday, they sent me downstairs for a chest x-ray because they heard a touch of pneumonia when they listened to my chest and I hacked up a lung. A nurse walking by commented that I should try sucking on some hard candy to stop the cough. She brought me a couple and it worked! When I got back to my room, I asked cousin Gina to pick me up some mints at the store.
Cousins Gina brought Liz up here so the doc could do some tests on her, which turned into a full day of bloodwork, an EKG, and urine testing. She also met with the doc (Mike came down for that since I was completely wiped out. She is a complete haplo-identical match and they're going to do actual bone marrow donation vs the stem cell transplant. They're going to knock her out under general anesthesia. I didn't want so scare here, but I did give her the facts. It doesn’t hurt a bit, but the pressure is the worst part. I've had 5 of them and I was fully awake. I think being knocked out will completely help control the pain. I think they're going to put it into me as soon as they are done withdrawing from her. I wonder if I'll be awake with my ativan pills? We'll have to see. The want to start 11/12, 11/15, or 11/18 - but it depends on me kicking these fevers down and have more than zero white blood cells.
The worst day was yesterday. I started out normal, but I had a couple of fevers. Then my blood pressure dropped and kept getting lower. When it hit 70, it scared the crap out of my team and they called in the ICU team. The first story was that a member of the ICU was going to come up here to closely monitor me. As she was heading up, they told me that I was being transferred so Mike rushed to pack up all of our crap so we'd be ready when she got here. She arrived and hooked me up to check my heart rate and a whole bunch of other things. I had tubes coming out everywhere! Plus the ICU scared me, but probably not as much since I was feeling so out of it. The ICU nurse monitored me while they looked for a bed. At the same time the were dumping a ton a fluids in me to help the blood pressure rise. A couple of hours later, my blood pressure started going up to 90. When it hit 100, they decided not to transfer me. Yay. They monitored me overnight and my blood pressure remained in the 100s.
When I tried to sleep last night, I coughed so bad I didn't get much sleep. I started hallucinating that random nurses were coming in my room to talk to me so I kept waking up just to check. My hallucinations were asking me questions and either I'd answer then or there'd be nobody in the room. It was a lonnnng night.
Angela wrote the above words, but has been unable to finish the post, so I (Mike) will step in.
After the ICU scare, she has continued to progress in the positive direction. Her vitals, blood pressure, oxygen levels, fevers, have all gotten better. Hard to tell exactly why, but I think that once the doc's found out for sure she had pneumonia - they were able to address that with a more targeted approach.
Over the last 2 days, her vitals have been stable, no fevers at all, coughing is under control and diminishing, and she is getting lots of sleep - which she desperately needed. For the last 2 nights she has slept much better (not great) but better. Additionally she has been able to sleep during the day. The one thing that has not gone away is her hallucinations. The doctors said that it was a side effect of one of the antibiotics. So hopefully they will go away soon. I just got an update on the hallucination….they are a side effect of the sleeping pill we gave her to help her sleep. It should wear off today!
The doctor also said that her “counts” (blood work and immune system) are on the rise. Her white blood counts (WBC) was 0.0 for about 2 weeks so it is ABOUT time. Yesterday it rose to 0.3 and should continue to more than double every day. The doc’s also said this morning that she “should” be released this coming week. WE HOPE!
11/9 Update – Yesterday the doctors said we were going to be released this morning. However, Angela had another coughing fit last night that we couldn’t get control of and it caused a fever. When the doctors saw the fever they said they wanted to keep her here another day for monitoring. As bad as I want to leave, it works out because Angela had a bone marrow biopsy and a chest CT scan today. It would have been late when we left the hospital anyway. The biopsy is to verify (hopefully) that the Leukemia is in remission and the chest CT is to check the status of the pneumonia. Additionally, the doctors promised us (again) that we will be going home (texas) tomorrow.
After I finally got moved to the 12 floor, my day didn't get any better. I spent the first few days fighting fevers, nausea, and a teerrible cough - which gave me fevers and the urge to puke. It was pretty rough and I didn't sleep well because of the coughing spasms, which went on and on for about 20 minutes. They gave me 4-hour and 6-hour cough medicine, which worked for the first two hours and then just stops working. On Tuesday, they sent me downstairs for a chest x-ray because they heard a touch of pneumonia when they listened to my chest and I hacked up a lung. A nurse walking by commented that I should try sucking on some hard candy to stop the cough. She brought me a couple and it worked! When I got back to my room, I asked cousin Gina to pick me up some mints at the store.
Cousins Gina brought Liz up here so the doc could do some tests on her, which turned into a full day of bloodwork, an EKG, and urine testing. She also met with the doc (Mike came down for that since I was completely wiped out. She is a complete haplo-identical match and they're going to do actual bone marrow donation vs the stem cell transplant. They're going to knock her out under general anesthesia. I didn't want so scare here, but I did give her the facts. It doesn’t hurt a bit, but the pressure is the worst part. I've had 5 of them and I was fully awake. I think being knocked out will completely help control the pain. I think they're going to put it into me as soon as they are done withdrawing from her. I wonder if I'll be awake with my ativan pills? We'll have to see. The want to start 11/12, 11/15, or 11/18 - but it depends on me kicking these fevers down and have more than zero white blood cells.
The worst day was yesterday. I started out normal, but I had a couple of fevers. Then my blood pressure dropped and kept getting lower. When it hit 70, it scared the crap out of my team and they called in the ICU team. The first story was that a member of the ICU was going to come up here to closely monitor me. As she was heading up, they told me that I was being transferred so Mike rushed to pack up all of our crap so we'd be ready when she got here. She arrived and hooked me up to check my heart rate and a whole bunch of other things. I had tubes coming out everywhere! Plus the ICU scared me, but probably not as much since I was feeling so out of it. The ICU nurse monitored me while they looked for a bed. At the same time the were dumping a ton a fluids in me to help the blood pressure rise. A couple of hours later, my blood pressure started going up to 90. When it hit 100, they decided not to transfer me. Yay. They monitored me overnight and my blood pressure remained in the 100s.
When I tried to sleep last night, I coughed so bad I didn't get much sleep. I started hallucinating that random nurses were coming in my room to talk to me so I kept waking up just to check. My hallucinations were asking me questions and either I'd answer then or there'd be nobody in the room. It was a lonnnng night.
Angela wrote the above words, but has been unable to finish the post, so I (Mike) will step in.
After the ICU scare, she has continued to progress in the positive direction. Her vitals, blood pressure, oxygen levels, fevers, have all gotten better. Hard to tell exactly why, but I think that once the doc's found out for sure she had pneumonia - they were able to address that with a more targeted approach.
Over the last 2 days, her vitals have been stable, no fevers at all, coughing is under control and diminishing, and she is getting lots of sleep - which she desperately needed. For the last 2 nights she has slept much better (not great) but better. Additionally she has been able to sleep during the day. The one thing that has not gone away is her hallucinations. The doctors said that it was a side effect of one of the antibiotics. So hopefully they will go away soon. I just got an update on the hallucination….they are a side effect of the sleeping pill we gave her to help her sleep. It should wear off today!
The doctor also said that her “counts” (blood work and immune system) are on the rise. Her white blood counts (WBC) was 0.0 for about 2 weeks so it is ABOUT time. Yesterday it rose to 0.3 and should continue to more than double every day. The doc’s also said this morning that she “should” be released this coming week. WE HOPE!
11/9 Update – Yesterday the doctors said we were going to be released this morning. However, Angela had another coughing fit last night that we couldn’t get control of and it caused a fever. When the doctors saw the fever they said they wanted to keep her here another day for monitoring. As bad as I want to leave, it works out because Angela had a bone marrow biopsy and a chest CT scan today. It would have been late when we left the hospital anyway. The biopsy is to verify (hopefully) that the Leukemia is in remission and the chest CT is to check the status of the pneumonia. Additionally, the doctors promised us (again) that we will be going home (texas) tomorrow.
Wednesday, October 20, 2010
Training for a 5K
My knee is finally better! I've walked 16 laps around the floor today, which is a vast improvement over any day this week when the most laps I did was three total. I've also kicked the walker to the curb and am able to just hang on to my IV pole. I keep joking with the staff that I'm training for a 5k.
My morning was a little trying. Since I had the fevers a couple of times yesterday, I had sweated a lot in my bed and I smelled funky. But to take a shower, the nurse has to unhook me from the IV pole and wrap my PICC in plastic (press-n-seal saran wrap works best from what I hear). Unfortunately, my PICC line had done some funky twist in my chest and they weren't able to use it until it got fixed so I got stuck with an IV yesterday. Because the PICC line was compromised, I spent the morning waiting for the IV team to come by to fix it. After "power flushing" my line with a bunch of heparin, they realized it would just have to come out and be replaced. Not a bad process, but not fun either. I managed to get through it without any sedative. It's not painful (the numbing part hurts more). After they re-did the PICC (from my hospital bed, BTW) I had to wait to be transported for a chest x-ray to make sure they fixed it. After a while, I finally got down to the x-ray area and waited for the actual x-ray. By the time I got back upstairs to my room, it was nearly 11am.
I was still waiting for my shower. I had asked the nurse much earlier that morning if she could get me ready for the shower. A tech came in and wrapped up my PICC, but she wasn't allowed to unhook the IV so we had to wait for the nurse. I had my saran-wrap arm wrapped for two hours by then and was eager to get my shower. I knew the chemo was supposed to start at noon so I had a very small window to get my shower in, but I knew I could do it. Unfortunately, the nurse didn't come into my room until 11:50 so she started the chemo and I waited another hour. The good news was that my PICC was fixed so they could use it again (which means tomorrow morning's blood draw should be a LOT easier). I finished that chemo and they had to flush the line and do some other things, but I finally got unhooked from the IV and into the SHOWER!! Hallelujah! The angels sang and the stench lifted! Since I still have my hair for now it felt great to wash it.
I just did the math on my baldness (typically +16 days after chemo), I should be bald by Halloween. Paint me orange and put a tiny green "stem" hat on me and call me the Great Pumpkin! I could have some fun with this. :)
My morning was a little trying. Since I had the fevers a couple of times yesterday, I had sweated a lot in my bed and I smelled funky. But to take a shower, the nurse has to unhook me from the IV pole and wrap my PICC in plastic (press-n-seal saran wrap works best from what I hear). Unfortunately, my PICC line had done some funky twist in my chest and they weren't able to use it until it got fixed so I got stuck with an IV yesterday. Because the PICC line was compromised, I spent the morning waiting for the IV team to come by to fix it. After "power flushing" my line with a bunch of heparin, they realized it would just have to come out and be replaced. Not a bad process, but not fun either. I managed to get through it without any sedative. It's not painful (the numbing part hurts more). After they re-did the PICC (from my hospital bed, BTW) I had to wait to be transported for a chest x-ray to make sure they fixed it. After a while, I finally got down to the x-ray area and waited for the actual x-ray. By the time I got back upstairs to my room, it was nearly 11am.
I was still waiting for my shower. I had asked the nurse much earlier that morning if she could get me ready for the shower. A tech came in and wrapped up my PICC, but she wasn't allowed to unhook the IV so we had to wait for the nurse. I had my saran-wrap arm wrapped for two hours by then and was eager to get my shower. I knew the chemo was supposed to start at noon so I had a very small window to get my shower in, but I knew I could do it. Unfortunately, the nurse didn't come into my room until 11:50 so she started the chemo and I waited another hour. The good news was that my PICC was fixed so they could use it again (which means tomorrow morning's blood draw should be a LOT easier). I finished that chemo and they had to flush the line and do some other things, but I finally got unhooked from the IV and into the SHOWER!! Hallelujah! The angels sang and the stench lifted! Since I still have my hair for now it felt great to wash it.
I just did the math on my baldness (typically +16 days after chemo), I should be bald by Halloween. Paint me orange and put a tiny green "stem" hat on me and call me the Great Pumpkin! I could have some fun with this. :)
Tuesday, October 19, 2010
Houston, We Have Arrived
I saw Dr. Wallmark on October 8th and based on the results of my blood work, he called the doctor at MD Anderson to express his concern that things were "heating up". After they talked, Dr Wallmark said I had an appointment with MD Anderson on the 12th and he suggested I take it. We spent the weekend packing up our stuff, dealing with what to do with our tenants, and figuring out who would take care of Shelby and Riley. It was a rough weekend and so hard to say goodbye to the boys. We left on Monday and arrived late at Mike's Aunt Valerie and Uncle Steven's house. I had another bone marrow biopsy on Tuesday and the news was worse than I thought - my blasts, which had previously been at 5%, had jumped to 20% and I was diagnosed with leukemia. I met with the leukemia team on Thursday and they admitted me on Friday. I started the first 5-day treatment on Saturday as an inpatient. If things go well, I may not need another round so we'll see.
It's been rough since I arrived. My knee started aching the weekend before I left and it got worse with the plane ride on the way down to the point where I had a hard time walking. Mike pushed me out of the airport in a wheelchair. When we finally got admitted late Friday night, Mike had to push me again in a wheelchair through the long, winding halls of the hospital with a small suitcase in tow. The first night, we didn't get any sleep between the PICC installation at 1am, the chest x-ray at 2am, and the usual rounds of vital signs at all hours. They wanted to start the chemo at 4am, but Mike begged them to reconsider and they relented. Despite that, we still barely got any sleep but at least we got more than we would have. They were then supposed to start chemo at 6am but then changed it to 9am.
Since then, I've had a few rough spots here and there. Because my knee was hurting so bad, they gave me morphine in my IV line and I threw up my smoothie about 30 minutes later. No more morphine for me! I took a pill form of morphine with no problems. I had someone from physical therapy come in and give me stretches and a walker to I could walk. My knee finally started to feel better yesterday and I've had a couple of setbacks but it's a vast improvement from where I was. I've run a couple of fevers today and felt crappy from it, but I'm doing better right now. This morning was also rough - my mom asked if I wanted toast for breakfast and I threw up in the trash can. I finally nibbled on crackers and felt better. Oh, and one of the chemo drugs gave me a HUGE headache yesterday which caused me to throw up too. Today they gave me some meds before the chemo to prevent the headache and it worked.
I did get some great news today. They found a 9/10 donor match who agreed to do the match. They're going to run some additional tests to make sure we're a good match but I'm relieved to have found someone. We're waiting for the test results of my cousins to see if any of them are also a match. A related half-match is better than an unrelated match - but I have options!
It's been rough since I arrived. My knee started aching the weekend before I left and it got worse with the plane ride on the way down to the point where I had a hard time walking. Mike pushed me out of the airport in a wheelchair. When we finally got admitted late Friday night, Mike had to push me again in a wheelchair through the long, winding halls of the hospital with a small suitcase in tow. The first night, we didn't get any sleep between the PICC installation at 1am, the chest x-ray at 2am, and the usual rounds of vital signs at all hours. They wanted to start the chemo at 4am, but Mike begged them to reconsider and they relented. Despite that, we still barely got any sleep but at least we got more than we would have. They were then supposed to start chemo at 6am but then changed it to 9am.
Since then, I've had a few rough spots here and there. Because my knee was hurting so bad, they gave me morphine in my IV line and I threw up my smoothie about 30 minutes later. No more morphine for me! I took a pill form of morphine with no problems. I had someone from physical therapy come in and give me stretches and a walker to I could walk. My knee finally started to feel better yesterday and I've had a couple of setbacks but it's a vast improvement from where I was. I've run a couple of fevers today and felt crappy from it, but I'm doing better right now. This morning was also rough - my mom asked if I wanted toast for breakfast and I threw up in the trash can. I finally nibbled on crackers and felt better. Oh, and one of the chemo drugs gave me a HUGE headache yesterday which caused me to throw up too. Today they gave me some meds before the chemo to prevent the headache and it worked.
I did get some great news today. They found a 9/10 donor match who agreed to do the match. They're going to run some additional tests to make sure we're a good match but I'm relieved to have found someone. We're waiting for the test results of my cousins to see if any of them are also a match. A related half-match is better than an unrelated match - but I have options!
Wednesday, September 29, 2010
Show Me the Money - $10K for Your Life
More bad news – my brother is not a half match either. There’s a 1:2 chance that he would be a half match and apparently one of us was switched at birth because he doesn’t match. Mom is completely dumbfounded because we looked so much alike at birth and as little kids (we really did) so how can he not match me at all?
The doctors gave me a very small glimmer of hope by asking to type my cousins as there’s a 1:8 chance one of them could be a donor match. I have four cousins so let’s see what happens. My insurance will not pay to type my cousins so that cost will be an out of pocket expense to me at $435 per cousin. Next, my insurance will also not pay to do a search in the National bone marrow registry and that expense will cost me $10,000. You read that right - $10K. At first I was floored by the cost to do a search in a database – how can it be that expensive? After thinking about it and talking to a few people, I’ve come to realize that cost must include searching for a donor match, carefully screening the person (full health workup), and then prepping them for the donor process (which includes Neupogen shots to maximize their stem cells to help me on the other end). That makes me feel better, but $10K is a lot of money. We’ll find the money somehow (now up to $12K if you included the cost to type my cousins), but how do people do it and why doesn’t insurance cover the cost? They’ll cover the transplant, but not the search process and the search is part of the transplant. Without the search, there is no transplant. It boggles my mind.
On top of all this, NIH did a preliminary search (which is free) and found no 10/10, or “perfect” match for me but did find 50 9/10 matches. I’m trying to be positive that 50 9/10 matches are better than no match at all, but I’m floored that there aren’t more out of the hundred thousand people in the database. I really don’t need to be that special and I want to find that perfect match who will help me live.
I’m having a really tough time this week dealing with this news plus the doctor in Texas started rattling off mortality rates and statistics with a half match versus a 9/10 match. I know the prognosis for MDS is not that great, but I didn’t need to hear it on the phone at work. I’ve decided I need another doctor with better bedside manners and one who will tell me that I have a tough road ahead and it’s not going to be easy, but he or she will help me FIGHT. I don’t need some research doctor to give me the stats and make me feel like I’m up against the impossible before I even start this journey. I've asked my doctor here for recommendations and then I'll call the advocacy center to see if they can give me someone else. I just can't deal with a bad doctor too.
I'm also trying to figure out whether I need to fly back to Texas to meet with their lymphoma doctor. I am scheduled to go back on Monday, but I'm trying to determine if I really need to go or can we work it over the phone with my local doctors. If the lymphoma is back, then maybe we can work the treatment locally? I just pray that the lymphoma is not back - one problem at a time.
The doctors gave me a very small glimmer of hope by asking to type my cousins as there’s a 1:8 chance one of them could be a donor match. I have four cousins so let’s see what happens. My insurance will not pay to type my cousins so that cost will be an out of pocket expense to me at $435 per cousin. Next, my insurance will also not pay to do a search in the National bone marrow registry and that expense will cost me $10,000. You read that right - $10K. At first I was floored by the cost to do a search in a database – how can it be that expensive? After thinking about it and talking to a few people, I’ve come to realize that cost must include searching for a donor match, carefully screening the person (full health workup), and then prepping them for the donor process (which includes Neupogen shots to maximize their stem cells to help me on the other end). That makes me feel better, but $10K is a lot of money. We’ll find the money somehow (now up to $12K if you included the cost to type my cousins), but how do people do it and why doesn’t insurance cover the cost? They’ll cover the transplant, but not the search process and the search is part of the transplant. Without the search, there is no transplant. It boggles my mind.
On top of all this, NIH did a preliminary search (which is free) and found no 10/10, or “perfect” match for me but did find 50 9/10 matches. I’m trying to be positive that 50 9/10 matches are better than no match at all, but I’m floored that there aren’t more out of the hundred thousand people in the database. I really don’t need to be that special and I want to find that perfect match who will help me live.
I’m having a really tough time this week dealing with this news plus the doctor in Texas started rattling off mortality rates and statistics with a half match versus a 9/10 match. I know the prognosis for MDS is not that great, but I didn’t need to hear it on the phone at work. I’ve decided I need another doctor with better bedside manners and one who will tell me that I have a tough road ahead and it’s not going to be easy, but he or she will help me FIGHT. I don’t need some research doctor to give me the stats and make me feel like I’m up against the impossible before I even start this journey. I've asked my doctor here for recommendations and then I'll call the advocacy center to see if they can give me someone else. I just can't deal with a bad doctor too.
I'm also trying to figure out whether I need to fly back to Texas to meet with their lymphoma doctor. I am scheduled to go back on Monday, but I'm trying to determine if I really need to go or can we work it over the phone with my local doctors. If the lymphoma is back, then maybe we can work the treatment locally? I just pray that the lymphoma is not back - one problem at a time.
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