Well, I saw the doctor and went over my results (this was a while back...I'm late posting). Though things looked possibly grim, it turns out (according to my hematologist) that, for me, abnormal is my normal. My blood levels did not vary or sway too much over the past several years nor are they doing so now. That means that there is no evidence of my bone marrow producing too many red blood cells as to pose a large threat to my health or to indicate polycythemia vera.
I take this as welcomed news. The fact that I get to proclaim even more that I am abnormal is a tremendous bonus! :) Knowing that I do not have to get therapeutic phlebotomies is a good thing too...though, I sometimes wish I could still donate blood just to keep the number lower and to help those who are in need of O+ blood.
Tuesday, September 16, 2014
Monday, April 14, 2014
Shhhhh....I got some results; but, still really can't talk about it
Well, I received the results of my most recent blood work. There has been no improvement and I am now being sent back to the hematologist. I will see my previous hemat-dr this Thursday. I am looking forward to getting things diagnosed and treated. Hopefully it will help some of the issues I've been having for a while.
The portion of this post that is hush hush is this...in my research to find out all I can about the condition I have I stumbled upon a bit of information. The polycythemia condition is categorized with blood cancers. Well, this isn't sitting very well with me right now. And the fact that I really can't share this is hard too. I mean, this sucks. If the full diagnosis is made that I do indeed truly have this condition then I'm going to have to tell my father (who just lost his wife {my mother} to liver cancer) that I have a blood cancer. I'll have to tell my daughter...I'll have to tell my husband...I'll have to tell all my family and friends... Which, I guess, will be a good thing because at that point I can talk about it. The worst part of all of this is knowing that this is a high probability and not being able to seek comfort for it from anybody. I mean, I don't want to accused of being a hypochondriac or anything (which has already happened).
So, in short, I'm trying not to fret until I see the doctor on Thursday. I'm at least trying to hold my composure in the presence of others. Until I can give a further update, please keep me in prayer...I need it in more ways than just for my health.
The portion of this post that is hush hush is this...in my research to find out all I can about the condition I have I stumbled upon a bit of information. The polycythemia condition is categorized with blood cancers. Well, this isn't sitting very well with me right now. And the fact that I really can't share this is hard too. I mean, this sucks. If the full diagnosis is made that I do indeed truly have this condition then I'm going to have to tell my father (who just lost his wife {my mother} to liver cancer) that I have a blood cancer. I'll have to tell my daughter...I'll have to tell my husband...I'll have to tell all my family and friends... Which, I guess, will be a good thing because at that point I can talk about it. The worst part of all of this is knowing that this is a high probability and not being able to seek comfort for it from anybody. I mean, I don't want to accused of being a hypochondriac or anything (which has already happened).
So, in short, I'm trying not to fret until I see the doctor on Thursday. I'm at least trying to hold my composure in the presence of others. Until I can give a further update, please keep me in prayer...I need it in more ways than just for my health.
Wednesday, March 19, 2014
Talking about something you can't talk about
So, what do you do when you have something that is on your mind but you don't have someone to talk to about it? You post your thoughts on a blog that nobody reads.
Just a little background...all my life my mom has had liver problems. I know she didn't expect to live as long as she did. November 18, 2013 was when we said goodbye to her...when liver cancer took her. In addition to the numerous liver problems she also had an undiagnosed blood clotting issue. None of the doctors were ever able to tell her what she actually had other than it was a hyper clotting disease. This in and of itself wasn't the cause of the cancer but it does raise some concern with my health.
Several years ago I had some blood work come back and show that my red blood cell count was too high. I didn't think too much of it because my stupid quack of a doctor at the time told me that it was elevated because I had had a hysterectomy and no longer had a period; so, I wasn't disposing of excess blood. In addition, when I had my surgery for the hysterectomy I had complications. I had to receive a blood transfusion. Well, I'm O+ and I received O- blood. This usually wouldn't be an issue except that I developed - antibodies. This still isn't really a problem though it is probably why the issue in my blood was detected. Prior to the complications of the hysterectomy, I regularly donated blood. Not regular donations but double red blood cell donations. Had I not developed the antibodies I would still be able to donate my double donation. The fact that it takes over 24 hours to clean the blood of the antibodies puts me on the no-donation list...forever. Well, unless they develop a new machine to wash the blood.
What does no longer donating mean for me? It means that the very reason I could donate double red blood cells could really be an issue for my health. Polycythemia is the clinical term for too many red blood cells. Several doctors in my past (even after the stupid quack doctor) did nothing about the test results. One did send me to a hematologist to have further testing done. It wasn't ruled to be caused by anything environmental and the tests did not show any abnormalities in the Jak2 gene that can cause this issue. As I recall, the next step was probably going to be a bone marrow biopsy.
For whatever reasons I had back then, I did not pursue anything further. Jump forward almost 5 years to my current awesome doctor who is concerned about the blood results. From the test results he determined that he wanted to try me first on low dose aspirin to see if that would make any difference. I go in two weeks to have more labs drawn to see if it has made any difference. This has me a bit concerned. On the one hand, I want to know if there is something wrong. On the other hand, if there is something wrong it is something that can lead to leukemia.
If it turns out that I do still have an issue then they have to find out what is causing it. I don't want a bone marrow biopsy...I imagine they hurt quite a bit. The standard treatment is therapeutic phlebotomy (which I'll have to pay for since I can no longer donate). My mind sorta runs with this thought in that I could just do some blood letting and in my weakened condition possibly have an encounter with God...you know, like a Druid ritual but without Druidism and with being a firm believer in God. Like a fast but of blood...not ingesting but expelling. I know, I'm wacked. That would be far too dangerous; and, with a history of suicidal tendencies, probably not a very wise idea.
Whatever the issue, the odds are not in my favor for it having resolved itself over the past few months when it has been getting worse since 2006 (I pulled some old blood work and compared numbers). Faced with this fact one starts to really consider their mortality. I have a 17 year old daughter and a wonderful husband to think about...and a newly widowed father. I am not worried that God doesn't have a plan...I'm concerned for my ability to follow it. My faith is very strong and I believe that with God all things are possible. I also know that my mother's faith far exceeded my own and she still had to live through hell.
All I can say with absolute surety is that I am a bit apprehensive about the future. I want to be here for my daughter...for her future...her future family. I want to be here for my husband. He almost lost me once and I don't want anything like that to happen again. I know if I talk to him about it he'll just tell me to not think about it. That I haven't got any reason to worry. That everything will be fine.
...and that is exactly why I can't talk about it. I don't want comfort or people to tell me everything will be alright. I don't want to hear people tell me that if I worry then I don't have faith. I don't want to hear people say that they will pray for me. My faith tells me that I can face anything. My mind tells me that there is a very plausible possibility that there is a serious issue because my mom had a blood issue and I do as well. My heart tells me that life is too short to waste a moment. I can feel a sense of urgency in not only getting things figured out but also in trying to be the best person that I can be in order to do the most good for those in my life.
At the heart of everything, I'm just a scared little girl who wants her mamma. I miss my mother more than I thought possible and I am scared that I may leave this earth in the same fashion that she did...only a lot sooner. But, if that is God's will then I can accept it. I am just not certain how I'll get through it.
So, thank goodness I don't have any followers on this blog; I would really hate to know that I bogged someone down with this just because I am struggling tonight with it.
Just a little background...all my life my mom has had liver problems. I know she didn't expect to live as long as she did. November 18, 2013 was when we said goodbye to her...when liver cancer took her. In addition to the numerous liver problems she also had an undiagnosed blood clotting issue. None of the doctors were ever able to tell her what she actually had other than it was a hyper clotting disease. This in and of itself wasn't the cause of the cancer but it does raise some concern with my health.
Several years ago I had some blood work come back and show that my red blood cell count was too high. I didn't think too much of it because my stupid quack of a doctor at the time told me that it was elevated because I had had a hysterectomy and no longer had a period; so, I wasn't disposing of excess blood. In addition, when I had my surgery for the hysterectomy I had complications. I had to receive a blood transfusion. Well, I'm O+ and I received O- blood. This usually wouldn't be an issue except that I developed - antibodies. This still isn't really a problem though it is probably why the issue in my blood was detected. Prior to the complications of the hysterectomy, I regularly donated blood. Not regular donations but double red blood cell donations. Had I not developed the antibodies I would still be able to donate my double donation. The fact that it takes over 24 hours to clean the blood of the antibodies puts me on the no-donation list...forever. Well, unless they develop a new machine to wash the blood.
What does no longer donating mean for me? It means that the very reason I could donate double red blood cells could really be an issue for my health. Polycythemia is the clinical term for too many red blood cells. Several doctors in my past (even after the stupid quack doctor) did nothing about the test results. One did send me to a hematologist to have further testing done. It wasn't ruled to be caused by anything environmental and the tests did not show any abnormalities in the Jak2 gene that can cause this issue. As I recall, the next step was probably going to be a bone marrow biopsy.
For whatever reasons I had back then, I did not pursue anything further. Jump forward almost 5 years to my current awesome doctor who is concerned about the blood results. From the test results he determined that he wanted to try me first on low dose aspirin to see if that would make any difference. I go in two weeks to have more labs drawn to see if it has made any difference. This has me a bit concerned. On the one hand, I want to know if there is something wrong. On the other hand, if there is something wrong it is something that can lead to leukemia.
If it turns out that I do still have an issue then they have to find out what is causing it. I don't want a bone marrow biopsy...I imagine they hurt quite a bit. The standard treatment is therapeutic phlebotomy (which I'll have to pay for since I can no longer donate). My mind sorta runs with this thought in that I could just do some blood letting and in my weakened condition possibly have an encounter with God...you know, like a Druid ritual but without Druidism and with being a firm believer in God. Like a fast but of blood...not ingesting but expelling. I know, I'm wacked. That would be far too dangerous; and, with a history of suicidal tendencies, probably not a very wise idea.
Whatever the issue, the odds are not in my favor for it having resolved itself over the past few months when it has been getting worse since 2006 (I pulled some old blood work and compared numbers). Faced with this fact one starts to really consider their mortality. I have a 17 year old daughter and a wonderful husband to think about...and a newly widowed father. I am not worried that God doesn't have a plan...I'm concerned for my ability to follow it. My faith is very strong and I believe that with God all things are possible. I also know that my mother's faith far exceeded my own and she still had to live through hell.
All I can say with absolute surety is that I am a bit apprehensive about the future. I want to be here for my daughter...for her future...her future family. I want to be here for my husband. He almost lost me once and I don't want anything like that to happen again. I know if I talk to him about it he'll just tell me to not think about it. That I haven't got any reason to worry. That everything will be fine.
...and that is exactly why I can't talk about it. I don't want comfort or people to tell me everything will be alright. I don't want to hear people tell me that if I worry then I don't have faith. I don't want to hear people say that they will pray for me. My faith tells me that I can face anything. My mind tells me that there is a very plausible possibility that there is a serious issue because my mom had a blood issue and I do as well. My heart tells me that life is too short to waste a moment. I can feel a sense of urgency in not only getting things figured out but also in trying to be the best person that I can be in order to do the most good for those in my life.
At the heart of everything, I'm just a scared little girl who wants her mamma. I miss my mother more than I thought possible and I am scared that I may leave this earth in the same fashion that she did...only a lot sooner. But, if that is God's will then I can accept it. I am just not certain how I'll get through it.
So, thank goodness I don't have any followers on this blog; I would really hate to know that I bogged someone down with this just because I am struggling tonight with it.
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