JennifersHope
New member
Hey I have been wanting to and wanting to report back to you more detailed information about how things have unrolled for me.
I did this on CF2Chat and was actually accussed by Tara and a few other ppl as being a faker, at first that ripped my heart out. I cried, offered to send medical records and a ton of other things to try to prove to ppl I thought was my friend that I am not some crazy person with Muchausen like it was suggested I was.
If you go to my facebook page you will see what looks like a Jerry Springer show on one of my wall posts. I am not the Jerry Springer type girl, Unfortunatly for Christy she is the only one from the other website that actually wrote on my wall, the others just bashed m on CF2Chat. So Christy actually got pretty smashed up on my wall, and some of my crazy friends even told her she deserved to be kicked in the face.
That is not my style, and yes while I was deeply wounded because I feel like I have been a part of the CF community for so long that people would be happy for me. I have received a lot of support from you guys on here.
So last we left off, I had two genes, remember i was going nuts asking about the Q1330E gene??? Begging anyone to know or find out an answer because more and more it was looking like I don't fit the normal CF phenotype or even an atypical one for that matter. I get deathly ill to the point of needing at time intubation but then I get better, that is not the common for a CFer so that is what lead to more and more testing. I first found out I was PS, after years of taking enzymes, we now believe that the enzymes are what were causing my bowel obstruction and also ultimately lead to my bowel perforating and me needing surgery.
I do test positive for CF via sweat test, numbers ranging iin the high 60's to low 70's. I have cultured PA and MRSA in the past, and as it would turn on not just CF lungs can culture that, so can regular old sick lungs.
No one at my clinic in NJ which is Dr Fiel at Morristown Hospital, or My current Clinic at MUSC could find the meaning of that gene, some of you may or may not be aware that some muations are considered non disease causing.
I had a nasal potential difference test, I was also accused of making up that test because so many CFers never heard of it therefore it doesn't exist, well, it does exsist, Dr Donaldson at UNC in Chapel Hill NC did that test for me last Friday, I did post those results, but a CFer with a defective gene would test about 5 or under, I was 27 or 28 I can't remember now.
I went to clinic yesterday, UNC apparently wants to test my mom and my dad because they want to see if the two genes are on the same dna strand, this is where I get fuzzy, if it is on the same gene, then it can not be ruled out for everyone else that it is disease causing, because if I understand correctly, you have to have two CF genes on Two different strands, I may have that totally backwards but either way, Q1330E is not off the hook just yet as to being a disease causing mutation or not, but FOR ME it is. SInce I have a normal channel functioning.
So after 10 entire years of living like a CFer, going through the emotions, ups and downs, yesterday at my clinic I was officially undiagnosed with CF.
My doctor pointed out to me very VERY clearly that this doesn't change how sick I have been, how careful I have to be, and how many times I have been intubated. I understand that. accept it. and move forward.
Not that one person on here has ever accussed me, (at least not to my face) but everyone on here has been amazing to me. So sweet, kind and loving.
I really want to stick around and continue to be a part of your lives. Just as a person who loves you, I don't think a disease makes a person, I think suffering, being sick and supporting the person are what matters.
If you have any questions for me, I am so willing to answer them, I have openely told you the names of the centers I have been to, my nuse at MUSC is one of my facebook friends and so is my RT, or I should say my old RT..
Also, Jeanne, the owner of this website is somehow related to Mike Canteen, who was my RT at MMH where I was treated for CF for years. There are a few CFerss who could vouch for me if you wanted, I know you never asked that, but I was so devasted by the response on the other website.
So that is the story, how ironic that I am sick today, my nurse just said yesterday that she is surprised I wasn't sick since I have been so tired and run down, I just left work early, sick, wheezing, short of breath and coughing!!!!
Well that is my story and I am sticking with it, unless of course my doctors change it again. Which they promised not to.. WE even had a get together after clinic yesterday to celebrate.. From what I was told, I am going to be a case study presented possibly at the NACF conference which I may or may not go to. I don't know if that is for sure btw, just something I was told they are going to do, For sure I am going in the medical journals and for sure I am going to be written up.
My nurse asked me yesterday if I was bitter, for the 10 years that I thought I had CF. somethings about that hurt, like chosing to not have children, man that kills me, I am way not healthy enough to now, I just can't. but 10 years ago I could have.
OTher then that I am trying to absorb it, find my place in this space and keep myself healthy
I love you guys, and I thank you for your support
Jennifer
I did this on CF2Chat and was actually accussed by Tara and a few other ppl as being a faker, at first that ripped my heart out. I cried, offered to send medical records and a ton of other things to try to prove to ppl I thought was my friend that I am not some crazy person with Muchausen like it was suggested I was.
If you go to my facebook page you will see what looks like a Jerry Springer show on one of my wall posts. I am not the Jerry Springer type girl, Unfortunatly for Christy she is the only one from the other website that actually wrote on my wall, the others just bashed m on CF2Chat. So Christy actually got pretty smashed up on my wall, and some of my crazy friends even told her she deserved to be kicked in the face.
That is not my style, and yes while I was deeply wounded because I feel like I have been a part of the CF community for so long that people would be happy for me. I have received a lot of support from you guys on here.
So last we left off, I had two genes, remember i was going nuts asking about the Q1330E gene??? Begging anyone to know or find out an answer because more and more it was looking like I don't fit the normal CF phenotype or even an atypical one for that matter. I get deathly ill to the point of needing at time intubation but then I get better, that is not the common for a CFer so that is what lead to more and more testing. I first found out I was PS, after years of taking enzymes, we now believe that the enzymes are what were causing my bowel obstruction and also ultimately lead to my bowel perforating and me needing surgery.
I do test positive for CF via sweat test, numbers ranging iin the high 60's to low 70's. I have cultured PA and MRSA in the past, and as it would turn on not just CF lungs can culture that, so can regular old sick lungs.
No one at my clinic in NJ which is Dr Fiel at Morristown Hospital, or My current Clinic at MUSC could find the meaning of that gene, some of you may or may not be aware that some muations are considered non disease causing.
I had a nasal potential difference test, I was also accused of making up that test because so many CFers never heard of it therefore it doesn't exist, well, it does exsist, Dr Donaldson at UNC in Chapel Hill NC did that test for me last Friday, I did post those results, but a CFer with a defective gene would test about 5 or under, I was 27 or 28 I can't remember now.
I went to clinic yesterday, UNC apparently wants to test my mom and my dad because they want to see if the two genes are on the same dna strand, this is where I get fuzzy, if it is on the same gene, then it can not be ruled out for everyone else that it is disease causing, because if I understand correctly, you have to have two CF genes on Two different strands, I may have that totally backwards but either way, Q1330E is not off the hook just yet as to being a disease causing mutation or not, but FOR ME it is. SInce I have a normal channel functioning.
So after 10 entire years of living like a CFer, going through the emotions, ups and downs, yesterday at my clinic I was officially undiagnosed with CF.
My doctor pointed out to me very VERY clearly that this doesn't change how sick I have been, how careful I have to be, and how many times I have been intubated. I understand that. accept it. and move forward.
Not that one person on here has ever accussed me, (at least not to my face) but everyone on here has been amazing to me. So sweet, kind and loving.
I really want to stick around and continue to be a part of your lives. Just as a person who loves you, I don't think a disease makes a person, I think suffering, being sick and supporting the person are what matters.
If you have any questions for me, I am so willing to answer them, I have openely told you the names of the centers I have been to, my nuse at MUSC is one of my facebook friends and so is my RT, or I should say my old RT..
Also, Jeanne, the owner of this website is somehow related to Mike Canteen, who was my RT at MMH where I was treated for CF for years. There are a few CFerss who could vouch for me if you wanted, I know you never asked that, but I was so devasted by the response on the other website.
So that is the story, how ironic that I am sick today, my nurse just said yesterday that she is surprised I wasn't sick since I have been so tired and run down, I just left work early, sick, wheezing, short of breath and coughing!!!!
Well that is my story and I am sticking with it, unless of course my doctors change it again. Which they promised not to.. WE even had a get together after clinic yesterday to celebrate.. From what I was told, I am going to be a case study presented possibly at the NACF conference which I may or may not go to. I don't know if that is for sure btw, just something I was told they are going to do, For sure I am going in the medical journals and for sure I am going to be written up.
My nurse asked me yesterday if I was bitter, for the 10 years that I thought I had CF. somethings about that hurt, like chosing to not have children, man that kills me, I am way not healthy enough to now, I just can't. but 10 years ago I could have.
OTher then that I am trying to absorb it, find my place in this space and keep myself healthy
I love you guys, and I thank you for your support
Jennifer