I went to the primary care office on Friday where I was given some prescriptions to help with pain & sleep. Nothing big or serious, but just something to help take inflammation down and to also help take the sharpness of the pain and make it less horrible when I'm trying to sleep. So far I actually had a good night's sleep on Friday & Sunday night, but Saturday was up most of the night again.
My doctor has no clue what is causing this recent flair-up, but since I only have to wait a month before I'm back in Baltimore she just did what she could to get me though until then. She tried to give me nerve medication and anti-depressants for pain/sleep, but as always I refused. If it ever gets to that point I think I'd rather throw myself in front of a bus. (For those who don't know this, I actually use the "In case I get hit by a bus..." saying, so I do mean this as a joke!)
I wish I could say I feel better today but I don't. All I can do is get through each day, do as much as I can, make sure I rest as much as I can and before I know it I'm sure my Baltimore visit will be here.
Monday, February 15, 2010
Monday, February 8, 2010
What is this?
I've been in denial for a few weeks, but the lower back pain is back. Severe, sharp back pain that is also causing me severe, sharp pain in the sciatica nerve in my right leg. It's now to the point where it's a Monday morning and I'm home, because if I were to drag myself into work all I would be able to think about is how much pain I'm in, how terrified I am and how exhausted I am from hardly sleeping the last three nights.
I don't know what is going on, and it will likely be several weeks before I do. I'm deeply concerned and caught off guard by the whole thing. I have an appointment with my Baltimore spine surgeon in March, so things will have to wait until then...unless I can't get things to calm down enough where I'm not suffering so much. Then I guess the game plan is to see if I can get an epidural injection, something I haven't had since 2007. It basically takes me out of commission a whole work day and has the potential to make me even worse, but I'm thinking that may be the only thing that can help short term.
I'm not sure what the next hours, days, weeks, etc. will bring, but at this point all I can do is pray that I'm not meant to go through another spine injury. What's meant to happen will happen, but this little setback has been pretty devastating to me physically and mentally. I've been hoping things would turn around but it's clear that's not going to happen so easily. I'll post updates here as I have them.
I don't know what is going on, and it will likely be several weeks before I do. I'm deeply concerned and caught off guard by the whole thing. I have an appointment with my Baltimore spine surgeon in March, so things will have to wait until then...unless I can't get things to calm down enough where I'm not suffering so much. Then I guess the game plan is to see if I can get an epidural injection, something I haven't had since 2007. It basically takes me out of commission a whole work day and has the potential to make me even worse, but I'm thinking that may be the only thing that can help short term.
I'm not sure what the next hours, days, weeks, etc. will bring, but at this point all I can do is pray that I'm not meant to go through another spine injury. What's meant to happen will happen, but this little setback has been pretty devastating to me physically and mentally. I've been hoping things would turn around but it's clear that's not going to happen so easily. I'll post updates here as I have them.
Friday, January 15, 2010
Letter to Rush University
Rush University has an orthopedic group that has created metal reaction testing, which is slowly becoming more important as the number of orthpedic implants continue to grow each year. I had testing done back in August/September of 2008, and from what I've heard on some of the spine message boards they have not gotten much response back from doctors/patients after the results are given. So I decided to take the time to write the Director of the group, who was the one initially contacted about my situation and decided I would share.
Why am I doing this? Well, not so much for my friends and family, but more for anyone who is researching ADR's and comes across my site. A popular spine message board I use to frequent is really promoting the artificial disc - in fact, the head guy just put out a video about it showing several people making the decision to have the surgery, and then showing how great it was for them. This obviously goes against my own experience (and the experience of many others), and I feel there is a responsibility to show both sides. So in an effort to continue to log my story until I find a better way to share information, I decided to post the letter here.
January 15, 2010
My name is Carrie Fairfield, and in August 2008 I had blood work sent to your facility for metal reaction testing. I had received a Charite artificial disc at L5/S1 in May 2005, and though it had initially been successful I had been suffering for over three years with unexplained pain and blood abnormalities that had yet to be diagnosed. After consulting with my spine surgeon, Dr. Scot Miller at Crystal Clinic in Akron – who had contacted Dr. Paul McAfee with Towson Orthopaedic Associates in Towson, Maryland – the recommendation was to have blood testing performed through Rush University utilizing the techniques you had developed.
I cannot begin to describe the difficult journey I had been on for over three years by the time I had the blood testing completed. I had been to over 15 surgeons and physicians, none of whom could explain why I was dealing with spine, joint and all-over-body pain, in addition to a high anti-nuclear antibody count and a very low platelet count, none of which I had experienced prior to the artificial disc replacement.
I was 28 years old when I had the artificial disc replacement (ADR) performed, and with the exception of disc degeneration at L5/S1 I was in perfect health. Before I had the ADR I had asked my surgeon if a metal reaction was possible and was told no. I asked every doctor that I met for three years the same question, and it was always no. Yet from my own research and medical articles and studies I had come across, I strongly felt that it was a possibility. I just needed to find someone who could test me. In the meantime I suffered constantly from severe pain, which greatly limited my life. I continued to worsen year after year, and went from an active individual to someone who could barely make it through a work day, only to come home and regenerate so I could do it all over the next day. I saw my future and feared it wouldn’t be long before I had to quit my job and lose the last part of a “normal” life; I had already lost everything else.
When I received the results from your medical group, it showed a high reaction to nickel, a component used in the artificial disc. I was also slightly reactive to two other metals used in the disc. Given the results I was referred to Dr. McAfee, who removed the artificial disc and replaced it with a fusion in December 2008. Prior to that surgery, my platelet count was down to 16,000.
While the disc had been removed, due to the high risk of the surgery surgeons had put in an IVC filter, made of nickel, prior to the surgery. This was kept in until February 2009 before it was removed. My platelet count at the time of the procedure was 9,000.
In April 2009 I started feeling slightly improved in regards to the joint and all-over body pain. I had my platelet count tested, and it came back at 23,000. In July 2009 I had my count tested again, and for the first time since before the ADR it was at a normal level – 190,000. My local physician was shocked at the unexpected increase and had them rerun the test; the count came back at 191,000.
As of October 2009, after being nickel and metal free for eight months, my platelet count is 331,000. My ANA count is still high, but it seems to be a non-issue. While I am still experiencing pain in my joints, it is not severe as it was for the three years prior. The all-over body pain is gone. The overall pain levels are greatly reduced, and slowly I am getting my life back at the age of 33.
If I had not had your testing available to me, I don’t know where I would be right now. In my eyes, you saved my life. You gave me answers when no one else could, and those answers allowed surgeons to take action and remove the artificial disc, which I believe was the cause of my issues. Even physicians who were very skeptical of metal reactions have seen my progress and are now starting to admit that maybe there is something to it after all.
For over three years I was on a very solitary road as a patient. I cannot begin to thank you and your team for the service you are providing. In a time where implants are becoming more common, I believe that this is an area that must be explored more. Patients need to be educated on potential metal reactions; even though they might not be commonplace, I believe they do exist. So many physicians out there, including those at large organizations such as The Cleveland Clinic, have turned a blind eye to this information. This puts a burden on the patient to try to get information on this topic, and I will say from experience it is not easy or readily available.
I hope you do not mind, but I have shared my journey and information on the testing you provide on several spine message boards. I am already aware of several individuals who have opted for the testing before getting the ADR, and one who tested with high reactivity to almost every component in the disc. Again, I feel you are providing a very valuable service and I want people to be aware it exists so they can take advantage of it if they feel it makes sense for them.
It was on one of these boards where I learned that you had not been receiving much feedback as to what happened once the testing was completed & the results were given to the patient, which is why I’m writing today. Without your testing, I would have likely had a fusion with the artificial disc being left in. No surgeon I had seen recommended removing it; I hate to think of the condition I would be in today had I allowed that to take place. Your testing allowed me to finally get the treatment I desperately needed, and for that I sincerely thank you. If there is ever anything I can do for you or your organization, I would be happy to return the favor.
Sincerely,
Carrie L. Fairfield
Why am I doing this? Well, not so much for my friends and family, but more for anyone who is researching ADR's and comes across my site. A popular spine message board I use to frequent is really promoting the artificial disc - in fact, the head guy just put out a video about it showing several people making the decision to have the surgery, and then showing how great it was for them. This obviously goes against my own experience (and the experience of many others), and I feel there is a responsibility to show both sides. So in an effort to continue to log my story until I find a better way to share information, I decided to post the letter here.
January 15, 2010
My name is Carrie Fairfield, and in August 2008 I had blood work sent to your facility for metal reaction testing. I had received a Charite artificial disc at L5/S1 in May 2005, and though it had initially been successful I had been suffering for over three years with unexplained pain and blood abnormalities that had yet to be diagnosed. After consulting with my spine surgeon, Dr. Scot Miller at Crystal Clinic in Akron – who had contacted Dr. Paul McAfee with Towson Orthopaedic Associates in Towson, Maryland – the recommendation was to have blood testing performed through Rush University utilizing the techniques you had developed.
I cannot begin to describe the difficult journey I had been on for over three years by the time I had the blood testing completed. I had been to over 15 surgeons and physicians, none of whom could explain why I was dealing with spine, joint and all-over-body pain, in addition to a high anti-nuclear antibody count and a very low platelet count, none of which I had experienced prior to the artificial disc replacement.
I was 28 years old when I had the artificial disc replacement (ADR) performed, and with the exception of disc degeneration at L5/S1 I was in perfect health. Before I had the ADR I had asked my surgeon if a metal reaction was possible and was told no. I asked every doctor that I met for three years the same question, and it was always no. Yet from my own research and medical articles and studies I had come across, I strongly felt that it was a possibility. I just needed to find someone who could test me. In the meantime I suffered constantly from severe pain, which greatly limited my life. I continued to worsen year after year, and went from an active individual to someone who could barely make it through a work day, only to come home and regenerate so I could do it all over the next day. I saw my future and feared it wouldn’t be long before I had to quit my job and lose the last part of a “normal” life; I had already lost everything else.
When I received the results from your medical group, it showed a high reaction to nickel, a component used in the artificial disc. I was also slightly reactive to two other metals used in the disc. Given the results I was referred to Dr. McAfee, who removed the artificial disc and replaced it with a fusion in December 2008. Prior to that surgery, my platelet count was down to 16,000.
While the disc had been removed, due to the high risk of the surgery surgeons had put in an IVC filter, made of nickel, prior to the surgery. This was kept in until February 2009 before it was removed. My platelet count at the time of the procedure was 9,000.
In April 2009 I started feeling slightly improved in regards to the joint and all-over body pain. I had my platelet count tested, and it came back at 23,000. In July 2009 I had my count tested again, and for the first time since before the ADR it was at a normal level – 190,000. My local physician was shocked at the unexpected increase and had them rerun the test; the count came back at 191,000.
As of October 2009, after being nickel and metal free for eight months, my platelet count is 331,000. My ANA count is still high, but it seems to be a non-issue. While I am still experiencing pain in my joints, it is not severe as it was for the three years prior. The all-over body pain is gone. The overall pain levels are greatly reduced, and slowly I am getting my life back at the age of 33.
If I had not had your testing available to me, I don’t know where I would be right now. In my eyes, you saved my life. You gave me answers when no one else could, and those answers allowed surgeons to take action and remove the artificial disc, which I believe was the cause of my issues. Even physicians who were very skeptical of metal reactions have seen my progress and are now starting to admit that maybe there is something to it after all.
For over three years I was on a very solitary road as a patient. I cannot begin to thank you and your team for the service you are providing. In a time where implants are becoming more common, I believe that this is an area that must be explored more. Patients need to be educated on potential metal reactions; even though they might not be commonplace, I believe they do exist. So many physicians out there, including those at large organizations such as The Cleveland Clinic, have turned a blind eye to this information. This puts a burden on the patient to try to get information on this topic, and I will say from experience it is not easy or readily available.
I hope you do not mind, but I have shared my journey and information on the testing you provide on several spine message boards. I am already aware of several individuals who have opted for the testing before getting the ADR, and one who tested with high reactivity to almost every component in the disc. Again, I feel you are providing a very valuable service and I want people to be aware it exists so they can take advantage of it if they feel it makes sense for them.
It was on one of these boards where I learned that you had not been receiving much feedback as to what happened once the testing was completed & the results were given to the patient, which is why I’m writing today. Without your testing, I would have likely had a fusion with the artificial disc being left in. No surgeon I had seen recommended removing it; I hate to think of the condition I would be in today had I allowed that to take place. Your testing allowed me to finally get the treatment I desperately needed, and for that I sincerely thank you. If there is ever anything I can do for you or your organization, I would be happy to return the favor.
Sincerely,
Carrie L. Fairfield
Monday, December 28, 2009
December 28, 2009
First, my one year follow-up appointment with my spine surgeon in Baltimore was moved to 2010, so no update there.
Today doesn't have much significance with my spine (and subsequent) issues, but two events did occur on this day. First, my Grandpa G. passed away four years ago today from leukemia. He was a pillar of strength and brought a great deal of joy into my life and countless others. I always felt like he had my back even though we were usually hundreds of miles apart. When he died I was experiencing initial symptoms of the disc failure and implant reaction, and since he told me several times he was worried about my back it really bothered me that he died before I had a resolution. If there is a heaven he is certainly in it, and I hope he can see the progress that has been made and that everything will be ok.
The other significance is that a year ago the husband & I were in a hotel room in a suburb of Baltimore. We had starting packing up and preparing for a trip home; the idea was that I would be cleared to travel and go back home the next day. That Sunday night Brad got a call about his mom, who had been admitted to the hospital. She was never able to return home, but did live until late March of this year. Given everything else Brad had on his shoulders this was a shock and a lot of weight to handle, but he did so with grace, composure and strength. I know it was unbelievably difficult for him to have his wife on the east coast unable to do much after a double-surgery while his mom was in an Iowa hospital. Timing was horrible, but you can do minimal to plan life events.
I was hoping to close out this blog in 2009, but will keep it open until the visit with the surgeon. I don't see day-to-day changes, but when I look at things month-to-month I notice little differences. We just finished eight days on a Midwest vacation in Springfield, Kansas City, Des Moines and Davenport, and to my amazement we did a lot of stuff with very little pain. The last couple of days my back started getting sore and I couldn't lug the luggage around like I did early on, but overall I was pleased with what I was able to accomplish. At times I get impatient and wonder why I'm not further along, but there is progress in the right direction and I'm grateful for that.
I hope everyone had a wonderful Christmas holiday and I wish you all a very happy and successful 2010.
Today doesn't have much significance with my spine (and subsequent) issues, but two events did occur on this day. First, my Grandpa G. passed away four years ago today from leukemia. He was a pillar of strength and brought a great deal of joy into my life and countless others. I always felt like he had my back even though we were usually hundreds of miles apart. When he died I was experiencing initial symptoms of the disc failure and implant reaction, and since he told me several times he was worried about my back it really bothered me that he died before I had a resolution. If there is a heaven he is certainly in it, and I hope he can see the progress that has been made and that everything will be ok.
The other significance is that a year ago the husband & I were in a hotel room in a suburb of Baltimore. We had starting packing up and preparing for a trip home; the idea was that I would be cleared to travel and go back home the next day. That Sunday night Brad got a call about his mom, who had been admitted to the hospital. She was never able to return home, but did live until late March of this year. Given everything else Brad had on his shoulders this was a shock and a lot of weight to handle, but he did so with grace, composure and strength. I know it was unbelievably difficult for him to have his wife on the east coast unable to do much after a double-surgery while his mom was in an Iowa hospital. Timing was horrible, but you can do minimal to plan life events.
I was hoping to close out this blog in 2009, but will keep it open until the visit with the surgeon. I don't see day-to-day changes, but when I look at things month-to-month I notice little differences. We just finished eight days on a Midwest vacation in Springfield, Kansas City, Des Moines and Davenport, and to my amazement we did a lot of stuff with very little pain. The last couple of days my back started getting sore and I couldn't lug the luggage around like I did early on, but overall I was pleased with what I was able to accomplish. At times I get impatient and wonder why I'm not further along, but there is progress in the right direction and I'm grateful for that.
I hope everyone had a wonderful Christmas holiday and I wish you all a very happy and successful 2010.
Friday, October 23, 2009
11 Months, 2 Days Post-Op
It's been awhile since I've posted an update, and since I know a few people still check back here I thought I would do so today. After I last posted I had my part-time team member out of the office unexpectedly for many weeks, plus with a business acquisition - my life has been work, work and more work.
I had an interesting email sent to me a few weeks ago. A girl about my age had read about what I had gone through with the implant reaction on one of the spine messages boards I frequent, and she was less than a month away from getting an artificial disc replacement. She took action, contacted the lab that did my blood work, and had the test done herself. Fourteen days later she received the results, and she - like me - had a very high reaction to nickel and a slight reaction to several other of the metals used in the artificial disc implant. Now opting for the fusion, she sent me an email thanking me for sharing my story and all of the contact information I had as it probably saved her a path similar to my own.
I'm not going to lie, as the last thing I wanted to do with my life was to be a guinea pig/test subject for others. However, I have always said that if something good could come from what I've been through then I could come to terms with it all and move forward. The email brought me a large sense of satisfaction knowing that a person was likely spared from the same path I was dragged down unwillingly. I'm able to now bring awareness to this issue so those who are contemplating the procedure can make as educated of a decision as possible given the complexity of this "simple" surgery.
So where do things stand with me? Well, my last platelet count a few weeks ago was 331,000, which is extremely healthy. My physician put it best when she said "Whatever auto-immune thing your body was going through appears to have resolved itself, or its in remission." Can you tell she is one of the skeptics when it comes to implant reactions? She is, but at least she still treats me like a person and is more open-minded than others I've come across. It's hard to believe that back in February my platelet count was 9,000. That is a huge jump, and the only difference is that now I am nickel-free. Physicians might doubt my pain levels, but blood work doesn't lie.
Pain-wise I'm definitely better off than I was a year ago, but I have a long ways to go. My body took a beating for over three years, I can't expect it to clear up overnight. At least now I'm starting to have 20-30 minute periods a few days a week where I feel close to perfect. No pain, nothing. It usually comes when I'm at work; I'd rather have it during my down time, but I won't complain! Tylenol arthritis has been a big friend of mine lately, as well as glucosamine even though it likes to shred my stomach. The big ingredient is shellfish, which I'm allergic to, but because I feel it helps with the joint pain I continue to take it.
I had been dealing with some unexplained foot pain for at least a year now, separate from what I dealt with before the surgery. I finally broke down and saw a podiatrist recently who confirmed that I have plantar fasciitis, which can often be caused by spine problems. I'm in a severe state, but it can luckily be treated with stretching - lots of stretching. It's something I'll likely deal with for the rest of my life, but already I'm noticing a difference by simply stretching several times throughout the day.
I go back to Baltimore for my one-year follow-up in December with my spine surgeon, so I'm hoping he's pleased with the results so far. It's hard to believe exactly one year ago tomorrow I was packing up and ready to head to Baltimore when I received the news from The Cleveland Clinic that my platelets were way too low (32,000) and they wouldn't approve me for surgery. It was one of the lowest days of my life, and the only time I've ever yelled at a doctor (though it was greatly deserved). What a difference a year makes.
Some days I feel like the progress isn't where I wanted it to be, but realistically I don't think I could be much better at this point. Day-to-day it's hard to see changes, but when I look at it month to month, or year to year, the changes become clearer. I am a long ways away from having the health I had prior to all of this mess back in May 2005, but I don't feel it's unobtainable. It will just take time.
With Thanksgiving coming up, it's a great time to reflect upon what you are thankful for. I am thankful for a husband who is my best friend and biggest supporter, and has helped me find strength even when I didn't think I had any left. I am thankful for parents who are always there for me, day or night. I am thankful for a brother who I know is always there, even when his schedule is ridiculous and we can rarely talk. I am thankful for my grandparents, aunts, uncles, and cousins who have provided a huge net of love and encouragement. I am thankful for the people I call my friends who provide me with an outlet to just be "normal", have fun, and enjoy life as much as possible. I definitely have a lot to be grateful for.
I'll try to post an update when I have my one-year follow-up. Depending on the outcome, I'm thinking I may close out this blog at the end of 2009 and go back to my regular one instead. I'd like 2010 to be a life that is not so impacted by "my failed ADR experiment." It feels like it's time to move on.
I had an interesting email sent to me a few weeks ago. A girl about my age had read about what I had gone through with the implant reaction on one of the spine messages boards I frequent, and she was less than a month away from getting an artificial disc replacement. She took action, contacted the lab that did my blood work, and had the test done herself. Fourteen days later she received the results, and she - like me - had a very high reaction to nickel and a slight reaction to several other of the metals used in the artificial disc implant. Now opting for the fusion, she sent me an email thanking me for sharing my story and all of the contact information I had as it probably saved her a path similar to my own.
I'm not going to lie, as the last thing I wanted to do with my life was to be a guinea pig/test subject for others. However, I have always said that if something good could come from what I've been through then I could come to terms with it all and move forward. The email brought me a large sense of satisfaction knowing that a person was likely spared from the same path I was dragged down unwillingly. I'm able to now bring awareness to this issue so those who are contemplating the procedure can make as educated of a decision as possible given the complexity of this "simple" surgery.
So where do things stand with me? Well, my last platelet count a few weeks ago was 331,000, which is extremely healthy. My physician put it best when she said "Whatever auto-immune thing your body was going through appears to have resolved itself, or its in remission." Can you tell she is one of the skeptics when it comes to implant reactions? She is, but at least she still treats me like a person and is more open-minded than others I've come across. It's hard to believe that back in February my platelet count was 9,000. That is a huge jump, and the only difference is that now I am nickel-free. Physicians might doubt my pain levels, but blood work doesn't lie.
Pain-wise I'm definitely better off than I was a year ago, but I have a long ways to go. My body took a beating for over three years, I can't expect it to clear up overnight. At least now I'm starting to have 20-30 minute periods a few days a week where I feel close to perfect. No pain, nothing. It usually comes when I'm at work; I'd rather have it during my down time, but I won't complain! Tylenol arthritis has been a big friend of mine lately, as well as glucosamine even though it likes to shred my stomach. The big ingredient is shellfish, which I'm allergic to, but because I feel it helps with the joint pain I continue to take it.
I had been dealing with some unexplained foot pain for at least a year now, separate from what I dealt with before the surgery. I finally broke down and saw a podiatrist recently who confirmed that I have plantar fasciitis, which can often be caused by spine problems. I'm in a severe state, but it can luckily be treated with stretching - lots of stretching. It's something I'll likely deal with for the rest of my life, but already I'm noticing a difference by simply stretching several times throughout the day.
I go back to Baltimore for my one-year follow-up in December with my spine surgeon, so I'm hoping he's pleased with the results so far. It's hard to believe exactly one year ago tomorrow I was packing up and ready to head to Baltimore when I received the news from The Cleveland Clinic that my platelets were way too low (32,000) and they wouldn't approve me for surgery. It was one of the lowest days of my life, and the only time I've ever yelled at a doctor (though it was greatly deserved). What a difference a year makes.
Some days I feel like the progress isn't where I wanted it to be, but realistically I don't think I could be much better at this point. Day-to-day it's hard to see changes, but when I look at it month to month, or year to year, the changes become clearer. I am a long ways away from having the health I had prior to all of this mess back in May 2005, but I don't feel it's unobtainable. It will just take time.
With Thanksgiving coming up, it's a great time to reflect upon what you are thankful for. I am thankful for a husband who is my best friend and biggest supporter, and has helped me find strength even when I didn't think I had any left. I am thankful for parents who are always there for me, day or night. I am thankful for a brother who I know is always there, even when his schedule is ridiculous and we can rarely talk. I am thankful for my grandparents, aunts, uncles, and cousins who have provided a huge net of love and encouragement. I am thankful for the people I call my friends who provide me with an outlet to just be "normal", have fun, and enjoy life as much as possible. I definitely have a lot to be grateful for.
I'll try to post an update when I have my one-year follow-up. Depending on the outcome, I'm thinking I may close out this blog at the end of 2009 and go back to my regular one instead. I'd like 2010 to be a life that is not so impacted by "my failed ADR experiment." It feels like it's time to move on.
Monday, August 10, 2009
Almost 8 Months Post-Op
Not much to write here. It's been a weird few months. I've fallen twice; yes, I'm a klutz. I had carpal tunnel surgery- right hand. Two days later a white van decided to merge into my lane with me being right next to them and I had to utilize my just-operated-on hand to quickly get onto the shoulder & steady myself from not going off the road entirely. That certainly hurt! Then last Thursday a cat ran right in front of me while going 30 mph, which caused muscle strains in my neck and mid-back. So, it's really hard for me to say how I'm feeling these days with all of the oddities occurring.
I'm not where I hoped I would be at eight months. Granted, it really is six months if you start counting from the time I had the IVC filter removed, which is when the last of the nickel was removed from my system. It's frustrating, complicated...I just try to do the best I can. Time will tell.
In the meantime I'm keeping busy with work. I also started a new little project that will be keeping me preoccupied for the next month or so - opposing the health care bill. I feel that changes to the health care system should be led by the medical community (and maybe some experienced patients like myself), not politicians. But that's just me. While I've avoided reading the talking points of the various parties, I instead read the bill and came to my own conclusion. Since I've spent 2/3 of my life dealing with the health system, you can imagine I have my own ideas. I'm not going to bore you with the details, but if you're interested in learning about what I'm doing let me know. I've basically started a petition, a new blog...I'm really trying to saturate the web as much as one person can while still holding down a 40+ hour/week job. It's taken a lot of work to get things organized, but it gives what I've been through some purpose. If I can do anything to help prevent someone else from going through what I've been through, then I will certainly feel like all of this was for a reason after all.
I hope everyone out there is happy, healthy, and doing well. I wish you all the best.
I'm not where I hoped I would be at eight months. Granted, it really is six months if you start counting from the time I had the IVC filter removed, which is when the last of the nickel was removed from my system. It's frustrating, complicated...I just try to do the best I can. Time will tell.
In the meantime I'm keeping busy with work. I also started a new little project that will be keeping me preoccupied for the next month or so - opposing the health care bill. I feel that changes to the health care system should be led by the medical community (and maybe some experienced patients like myself), not politicians. But that's just me. While I've avoided reading the talking points of the various parties, I instead read the bill and came to my own conclusion. Since I've spent 2/3 of my life dealing with the health system, you can imagine I have my own ideas. I'm not going to bore you with the details, but if you're interested in learning about what I'm doing let me know. I've basically started a petition, a new blog...I'm really trying to saturate the web as much as one person can while still holding down a 40+ hour/week job. It's taken a lot of work to get things organized, but it gives what I've been through some purpose. If I can do anything to help prevent someone else from going through what I've been through, then I will certainly feel like all of this was for a reason after all.
I hope everyone out there is happy, healthy, and doing well. I wish you all the best.
Tuesday, June 30, 2009
Finally - GREAT news!
I had a platelet count today along with a bleeding time test in preparation for my carpal tunnel surgery on July 15. The bleeding test didn't go so well...16 minutes to stop after being given a small cut in my arm, when normally it should have been 10 minutes. I was worried, and awaiting a call from the hospital on my home answering machine telling me that my platelet count was too low, that I could die, not to do anything, go to an ER, etc.
So my dad works with the surgeon who is performing the surgery, and he was sent the platelet count and bleeding test results. My dad had told him about the bleeding test (because I asked him to), and he was concerned. However, my platelet count came back at 190,000. Not 19,000...which is my usual "range". 190,000. The surgeon thought they made a mistake and asked them to run it again, which they did, and that test came out at 194,000. Normal is 150,000...I AM NORMAL!!!
Because of the anti-inflammatory meds I'm taking for pain the surgeon concluded that was the reason for the poor results of the bleeding test. But given my platelets are normal, I'm set to go for surgery.
I haven't had much good news to share on this blog, so I had to share this. I have felt for some time that my symptoms are not what they were before the surgery. I have felt like I've been left with a lot of joint damage and suffering from pain as a result, especially in my hips, knees and ankles and feet. I was frustrated at my low platelet count, but the last one I had was in April about two months after they removed the last of the nickel from my system. It was around 20,000 then, I believe. Now it's been over four months since the nickel removal, and I have a normal count again. And I'm just shocked.
I wouldn't be surprised if I go in for another test at some point and it's low again, but for today I have a normal count. I haven't been above 150,000 since 2007 or possibly earlier than that. When I had my 2nd surgery in 2007 my platelets were at 110,000; a year later they were the same, but then took a nose-dive in the months following. Since November my highest count - without steroids or a transfusion - was 36,000. I've usually been lower than 20,000, and have been as low as 9,000. To go up 180,000 platelets in about four and a half months time is just awesome. I am so very, very happy right now.
It's a small victory today. I still hurt horribly, but I have platelets. At least for today, in my mind, I feel like what I had assumed for several years really was the truth - the metal allergy caused my downfall in health. I was brushed off, laughed at, ignored and made to feel like an idiot and a liar by doctors and nurses. But blood tests don't lie, and today is a victory for me, and one step towards proving that I was right. I hope there are more tests like this to follow. If this is the case, I think there are several people out there who have similar symptoms like me with no diagnosis; this could be their ticket to a normal life. But to prove the case you need test results to back it up, and now I have one in my favor.
So my dad works with the surgeon who is performing the surgery, and he was sent the platelet count and bleeding test results. My dad had told him about the bleeding test (because I asked him to), and he was concerned. However, my platelet count came back at 190,000. Not 19,000...which is my usual "range". 190,000. The surgeon thought they made a mistake and asked them to run it again, which they did, and that test came out at 194,000. Normal is 150,000...I AM NORMAL!!!
Because of the anti-inflammatory meds I'm taking for pain the surgeon concluded that was the reason for the poor results of the bleeding test. But given my platelets are normal, I'm set to go for surgery.
I haven't had much good news to share on this blog, so I had to share this. I have felt for some time that my symptoms are not what they were before the surgery. I have felt like I've been left with a lot of joint damage and suffering from pain as a result, especially in my hips, knees and ankles and feet. I was frustrated at my low platelet count, but the last one I had was in April about two months after they removed the last of the nickel from my system. It was around 20,000 then, I believe. Now it's been over four months since the nickel removal, and I have a normal count again. And I'm just shocked.
I wouldn't be surprised if I go in for another test at some point and it's low again, but for today I have a normal count. I haven't been above 150,000 since 2007 or possibly earlier than that. When I had my 2nd surgery in 2007 my platelets were at 110,000; a year later they were the same, but then took a nose-dive in the months following. Since November my highest count - without steroids or a transfusion - was 36,000. I've usually been lower than 20,000, and have been as low as 9,000. To go up 180,000 platelets in about four and a half months time is just awesome. I am so very, very happy right now.
It's a small victory today. I still hurt horribly, but I have platelets. At least for today, in my mind, I feel like what I had assumed for several years really was the truth - the metal allergy caused my downfall in health. I was brushed off, laughed at, ignored and made to feel like an idiot and a liar by doctors and nurses. But blood tests don't lie, and today is a victory for me, and one step towards proving that I was right. I hope there are more tests like this to follow. If this is the case, I think there are several people out there who have similar symptoms like me with no diagnosis; this could be their ticket to a normal life. But to prove the case you need test results to back it up, and now I have one in my favor.
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