By SMALL and SIMPLE things GREAT things are BROUGHT to pass
Ok- I am finally having the time, energy, and ability to sit down and write about the Phone Consultaion I had with the doctor in Texas. I have to back track a little bit because I need to document how this appointment all fell into place.
Monday November 29:
Called doctors office in Texas to talk to the doctor to know what the results mean. The nurse tells me that I first need to fill out a First Time Patient Questionare and then fax it to her and then she will set up a time to consult over the phone with the doctor.
WHAT? That is NOT what I had in mind when I talked to my doctor on the 24th of November the night before Thanksgiving. She made it seem like I was going to get my ANWSERS today!
I was so bummed........but what could I do but go forward and do what she asked. I spent the next hour or so before my HV's filling out the forms and faxed them as soon as I got to work.
The nurse also wanted me to ask my doctor if she sent all my records or just a few since she was thinking that the doctor would want all my records.
I call my doctors office and ask for Dr. Levy since she TOLD me specificly to call her if I have any questions or concerns.
RECEPIONSIT: Hi, How can I help you?
ME: My name is Karmann Wennerlind and can I please speak to Dr. Levy.
RECEPIONIST: Umm no you can speak to one of her nurses.
ME: She wanted me to ask for her. Can I leave her a message?
RECEPIONIST: Patients do not go directly to Dr. Levey. The messages are sent to the nurses and us. We determine what needs to be told to Dr. Levy.
ME: Ok- Well then can you leave a message that I spoke to the doctor she wanted me to speak to in Texas and I have some questions for her.
RECEPIONIST: Why are you talking with a doctor in Texas? Are you living there?
ME: NO! It is really complicated and I just need her to call me back.
RECEPIoNIST: What is about?
ME: My Auto Immune Disorder
RECEPIONIST: I will let the nurses know you called
I get off the phone flusterd but o well. What can I do. I can only wait for Dr. Levy to call me back.
Later that evening- I get a call from the Doctors office in Texas while in an appointment. Please call me tomorrow and we will set up a time to do a phone consult
Tuesday Novemeber 30
Call the doctors office early that moring. The nurse in Texas has an opening on the 7th of Decemebr @ 7 my time 9 his time! PERFECT! It works great with my work schedule. It usually takes about two hours.
She then tells me that before he can meet with me I need to get ALL my medical records mailed to him by Friday!!! He then needs all my exams that were done at Simon Medical Imaigry to be sent to him no later than Monday.
I say to myself GREAT i have less than four days to figure this all out but I want to meet with him so I will try to get them all to her.
I get off the phone with her and call my doctors office:
Recpionist: Hi, can I help you
Me: Yes, I need to leave a message for Dr. Levy concerning my medical records.
Recepionist: Um Karmann. I deal with the Medical Records not doctor Levy and you go through me. What is it that I can help you with?
Me: I have been working with a doctor in Texas that doctor Levy wanted me to and he wants to do a Phone Consultation with me a week from today but he needs all my records faxed and mailed by Friday.
Recepionist: There is NO way that we can do that. It takes at least 14 days or more to get them copied, faxed and then mailed off. Sorry you are not going to make that appointment!
Me: Can I come in and sign a release for you to just copy them and give them to me so that I can send them on my own and then you wont have to worry.
Recepionist: We can not just stop and drop everything to copy all your records and have them ready at your convience. It will take some time and plus we WILL charge you for every copy that we make. KARMANN.......You will not have these records in time for your appointment. Please cancel and you will just have to reschedule!
Me: ok. Thank you I guess I will see you in a little bit to fill out the forms to release my information.
I hang up the phone ready to burst into tears because I once again am not able to KNOW what is wrong with me and what those results mean and I dont want to have to wait another month! Then I realize I forgot to ask her something.
I call back............
ME: Hi its me again. I forgot to ask you to ask Dr. Levy if she sent all my records or just a part of them because if she sent all of them then I dont have to worry about all of this.
Recepitonist: KARMANN........I deal with the records, I will go and check the chart, I will see what she wrote and what she sent and I will call you back and let you know! NOT DR. LEVY! Also again, you WILL not have this ready for next week! Bye now.
I get off the phone and start to cry and cry! I cant believe how badly I have been treated and how KNOW one will let me talk to Dr. Levy who told me herself to call her with questions! Now it will be MONTHS before I can talk to that doctor cause who knows how long they will take to copy and send the records now that she is totally bugged by me!
Then the thought comes into my head-
Go to Target, get a card, write that you are sorry in it and tell your story. When you go to fill out the medical release forms give the card to the recepionist.
NO WAY! I am not saying SORRY! Why do I need to say sorry when she is the one that needs to say sorry!!
Even though i dont want to do it I feel like I am suppose to so after my HV I did just that and told her I was sorry for bothering her so much and told her my health story of the past six years and how Dr. Levy has finally figured out what is wrong but cant tell my what my results mean so wants me to talk with her friend in Texas. I then tell her I am sorry for losing my manners I guess the excitement of the thought of actually being able to be a mother got the best of me. I will let it go and wait for when the records are done. Im sorry please forgive me!
As I am writing this tears are flowing down my face. I dont know how this card is suppose to help but I feel I need to do it so here it goes.
I get to the doctors office and ask for a medical release form. The lady acts confused on what I need and why so I tell her. I sit down and fill it out.
It should have taken me five minutes top but I kept stalling and sat in the chair for 15. I felt so dumb giving the card. I didnt want too. Then I hear- GIVE HER THE CARD.
I get up and walk up to the recepionist and say-
Did I talk to you earlier this morning? She says I dont think so. I ask her if there is another girl and she says yes she must be in the back and her name is Sharron W.
I then start to cry cause I am so overwhelmed and ask her if she could please give this card to her and tell her that I am sorry. She said ok.
I run out of there as fast as I could. I am so imbarressed and dont want to be there! I get to my car and then realize I FORGOT to ask a simple question.
I call:
Recepionist: Hi this is Sharron
Me: Hi its karmann
Recepionsit: Hi sweetie I just got your card and read it! I am so sorry that you felt I was upset with you. I am not. I want to do all that I can for you. I just placed a call in to Dr. Levy. She is in a conference right now but she will call me on her lunch break. I ask her about the records and get back to you in the next hour, ok sweetie.
Me: In total shock in the different tone and way she is speaking to me say, ok thank you!
I COULD not believe the change that she did with me! A small simple card changed her whole way of treating me! I thanked my Heavenly Father right then and there and knew if I am to talk with this doctor next week it was all HIS doing!
An hour later the recepionsist calls me-
Recepionist: Hi karmann, I just got off the phone with Dr. Levy! She told me that she wants me to copy all the medical records that we have of yours and to give them to you for free. She wants you to come back down today to the office and pick them up at your earliest convience. Dr. Levy wants these records in the mail today and wants you to be able to talk to the doctor in Texas on Tuesday.
Me: Wow, thats great! I will see you in a few hours
Recepionist: Ask for me and I will come out and give you the package. thanks and see you in a little while.
Get off the phone DUMBFOUNDED!!!! Oh my GOSH!!! I am going to have ALL my records in my hands free of CHARGE and able to send them TOdAY!!! I cant believe this! What a change of circumstances in just few short hours!
I go down to pick up the records and ask for Sharron W. She comes into the lobby and gives me the bIGGEST HUG and says is this KARMANN!!! She takes me out to the hall and gives me the package of about 100 pages of records and tells me not to tell anyone that I got these copied.
She then tells me that Dr. Levy wants me to call her if I have ANY questions, concerns, or needs and I am to do whatever you need! She then tells me
Dr. Levy Loves you! I want to show you something. She then opens up my chart and shows me the emails that she has written back and forth to her friend in Texas. They are so genuine and so sweet. She talks about her great concern for me and wanting to do all that she can to help me. She is not just a FRIEND to this doctor but they are VERY close. They sign the emails with love and give your kids and family members hugs from me.
It was all I could do to keep the tears from rolling down my face. It was so sweet and so sincere and all of this was happening because of her.
I took my records and told her thankyou and sent them FEDEX and they got there Thursday.
Tuesday December 7, 2010 @ 7 in the morning.
The doctor calls and breaks my problems down to 3 areas
1. HORMONES- My hormones are NOT where they should be for a girl my frame, weight, and metablolism. He stated that the doctors told me I was in the normal range but he then says when I look at normal range and then look at KARMANN your levels are NOT in normal range for Karmann. He told me my PROGESTRONE is super low and I would NEVER be able to carry a baby with my levels. He then went on to the ovulation part. He said YEAH all the doctors tell you YOU ARE GOLDEN you OVULATE and have a great LH SURGE! You get that beautiful pink line on the ovulation sticks but when I look at the levels of hormones broken down that go along with your surge there are SERIOUS problems!! Previous doctors have not looked carefully at KARMANN's norms and just put you in the NORMAL range. He said with my history of miscarriages all this was a HUGE red flag for him. Next he talked about my thyroid. He said I am borderline in the normal range which makes him think again I am not where I should be. SO,.............I have to do A lot of BLOOD work again since the last tests he has are from June of 09 and then he thinks he will put me on HSG shots along with progestrone. He told me I should have NEVER been put on Chlomide!!!!! My body, hormones, and weight only was harmed by CHlomide and I need HSG. He told me he will only have me do the shots on 12, 13, 14 not 2-16. He wants ONE healthy egg not 5! WHEW!!!
2. He wants me to do a couple more tests with the auto immune system just to rule out if I will need to be put on Cortizone as well or not.
3. Dealing with the NK cells and the shared DQ/ALPHA genotype that Ryan and I both have. He went over the history and background of IVIG therapy and how is it used for so many different treatments. he talked about how there has been NO ONE that has gotten HIV or any other Blood Diesease from it because the blood is acid burned ( steralized) before it is put into any patient. He said that there is another product called Introlipid 20 that is a steriod and has nothing to do with blood. He said it is a lot cheaper and doesnt have the side effects as IVIG thearpy does. He told me he thinks RYan and I are a candidate for that treatment first and then if it doesnt work then we can go to the next level which is IVIG therapy. Since it is a steriod and I dont need to have him do it at this time I DO NOT need to go to Dallas to have him treat me. He is going to work with Dr. Levy and direct her on the path that he would like me to go and walk her through the steps and results and primarily she will be my care taker! Also the INTrolipid stuff is range of 100-400 dollars rather than 2200!~~ Such a big difference and WAY doable!!!
He then ends the conversation with
You are not crying are you?
I tell him no
He says good cause I am not crying
You can not cry if I am not crying
Because if I am crying then that means there is NO hope
and sweetheart there is LOTS of hope!
You will bring your little one here and its going to be ok
He then tells me that he wants to see what my XRAY flims look like from AZ and then will write up a recommendation letter to Dr. Levy and we can get started.
Friday December 10
I called the Texas office to make sure that they got my flims. They did and the nurse tells me that she has sent the recommendatons to Dr. Levy and also sent me one via mail as well.She also mentioned that Dr. Cohen called Dr. Levy and talked with her personally as well. Dr. Levy's office called about three hours later and told me that we would start the blood work up on Day 3 of my next cycle.
They are testing:
Progestrone, LH, FSH, Free Testostrone, testostrone, free t4, DHEAS, Vitamin D-25 hydroxy, Folic acid, Vitamin B-12, fasting glucose and insulin, random prolactin, anti-thyroid antibodies, anti nuclear antibodies and quantitative IgA.
It took 10 viles of blood to get all that in but it will be worth to see what is going on.
I have to do another Hystoscopy in January. So that should be lots of fun! The next few months or so will be lots of work up stuff before we acutally start the treatments.
I cant BELIEVE how everything came together in such a matter of hours for me to get to talk to this doctor and get all my questions answered! I am feeling so blessed as I dont have to go to texas and the treatments are so much cheaper than I thought.
I CANT BELIEVE how a simple card CHANGED everything and got the ball rolling.
You CANT deny the spirit and you CANT deny that Heavenly Father is in CHARGE. I am truly blessed and feel so luck to have the GOSPEL in my life!
I am not going to Blog about this for a while now. I am one for surprises. I dont want to leave all of you hanging but I am going too. I feel that this chapter in my life is coming to a close and I hope to start the next chapter with sharing with you good news! Until then you will be reading blog posts of things that Ryan and I have been up too. Unless something happens that needs to be addressed I hope the next time I talk about all of this the ending is a HAPPY POST with you know what!
Thanks again for all of you love, support, and encouraging comments! It has meant more than you WILL EVER KNOW!!!
Monday November 29:
Called doctors office in Texas to talk to the doctor to know what the results mean. The nurse tells me that I first need to fill out a First Time Patient Questionare and then fax it to her and then she will set up a time to consult over the phone with the doctor.
WHAT? That is NOT what I had in mind when I talked to my doctor on the 24th of November the night before Thanksgiving. She made it seem like I was going to get my ANWSERS today!
I was so bummed........but what could I do but go forward and do what she asked. I spent the next hour or so before my HV's filling out the forms and faxed them as soon as I got to work.
The nurse also wanted me to ask my doctor if she sent all my records or just a few since she was thinking that the doctor would want all my records.
I call my doctors office and ask for Dr. Levy since she TOLD me specificly to call her if I have any questions or concerns.
RECEPIONSIT: Hi, How can I help you?
ME: My name is Karmann Wennerlind and can I please speak to Dr. Levy.
RECEPIONIST: Umm no you can speak to one of her nurses.
ME: She wanted me to ask for her. Can I leave her a message?
RECEPIONIST: Patients do not go directly to Dr. Levey. The messages are sent to the nurses and us. We determine what needs to be told to Dr. Levy.
ME: Ok- Well then can you leave a message that I spoke to the doctor she wanted me to speak to in Texas and I have some questions for her.
RECEPIONIST: Why are you talking with a doctor in Texas? Are you living there?
ME: NO! It is really complicated and I just need her to call me back.
RECEPIoNIST: What is about?
ME: My Auto Immune Disorder
RECEPIONIST: I will let the nurses know you called
I get off the phone flusterd but o well. What can I do. I can only wait for Dr. Levy to call me back.
Later that evening- I get a call from the Doctors office in Texas while in an appointment. Please call me tomorrow and we will set up a time to do a phone consult
Tuesday Novemeber 30
Call the doctors office early that moring. The nurse in Texas has an opening on the 7th of Decemebr @ 7 my time 9 his time! PERFECT! It works great with my work schedule. It usually takes about two hours.
She then tells me that before he can meet with me I need to get ALL my medical records mailed to him by Friday!!! He then needs all my exams that were done at Simon Medical Imaigry to be sent to him no later than Monday.
I say to myself GREAT i have less than four days to figure this all out but I want to meet with him so I will try to get them all to her.
I get off the phone with her and call my doctors office:
Recpionist: Hi, can I help you
Me: Yes, I need to leave a message for Dr. Levy concerning my medical records.
Recepionist: Um Karmann. I deal with the Medical Records not doctor Levy and you go through me. What is it that I can help you with?
Me: I have been working with a doctor in Texas that doctor Levy wanted me to and he wants to do a Phone Consultation with me a week from today but he needs all my records faxed and mailed by Friday.
Recepionist: There is NO way that we can do that. It takes at least 14 days or more to get them copied, faxed and then mailed off. Sorry you are not going to make that appointment!
Me: Can I come in and sign a release for you to just copy them and give them to me so that I can send them on my own and then you wont have to worry.
Recepionist: We can not just stop and drop everything to copy all your records and have them ready at your convience. It will take some time and plus we WILL charge you for every copy that we make. KARMANN.......You will not have these records in time for your appointment. Please cancel and you will just have to reschedule!
Me: ok. Thank you I guess I will see you in a little bit to fill out the forms to release my information.
I hang up the phone ready to burst into tears because I once again am not able to KNOW what is wrong with me and what those results mean and I dont want to have to wait another month! Then I realize I forgot to ask her something.
I call back............
ME: Hi its me again. I forgot to ask you to ask Dr. Levy if she sent all my records or just a part of them because if she sent all of them then I dont have to worry about all of this.
Recepitonist: KARMANN........I deal with the records, I will go and check the chart, I will see what she wrote and what she sent and I will call you back and let you know! NOT DR. LEVY! Also again, you WILL not have this ready for next week! Bye now.
I get off the phone and start to cry and cry! I cant believe how badly I have been treated and how KNOW one will let me talk to Dr. Levy who told me herself to call her with questions! Now it will be MONTHS before I can talk to that doctor cause who knows how long they will take to copy and send the records now that she is totally bugged by me!
Then the thought comes into my head-
Go to Target, get a card, write that you are sorry in it and tell your story. When you go to fill out the medical release forms give the card to the recepionist.
NO WAY! I am not saying SORRY! Why do I need to say sorry when she is the one that needs to say sorry!!
Even though i dont want to do it I feel like I am suppose to so after my HV I did just that and told her I was sorry for bothering her so much and told her my health story of the past six years and how Dr. Levy has finally figured out what is wrong but cant tell my what my results mean so wants me to talk with her friend in Texas. I then tell her I am sorry for losing my manners I guess the excitement of the thought of actually being able to be a mother got the best of me. I will let it go and wait for when the records are done. Im sorry please forgive me!
As I am writing this tears are flowing down my face. I dont know how this card is suppose to help but I feel I need to do it so here it goes.
I get to the doctors office and ask for a medical release form. The lady acts confused on what I need and why so I tell her. I sit down and fill it out.
It should have taken me five minutes top but I kept stalling and sat in the chair for 15. I felt so dumb giving the card. I didnt want too. Then I hear- GIVE HER THE CARD.
I get up and walk up to the recepionist and say-
Did I talk to you earlier this morning? She says I dont think so. I ask her if there is another girl and she says yes she must be in the back and her name is Sharron W.
I then start to cry cause I am so overwhelmed and ask her if she could please give this card to her and tell her that I am sorry. She said ok.
I run out of there as fast as I could. I am so imbarressed and dont want to be there! I get to my car and then realize I FORGOT to ask a simple question.
I call:
Recepionist: Hi this is Sharron
Me: Hi its karmann
Recepionsit: Hi sweetie I just got your card and read it! I am so sorry that you felt I was upset with you. I am not. I want to do all that I can for you. I just placed a call in to Dr. Levy. She is in a conference right now but she will call me on her lunch break. I ask her about the records and get back to you in the next hour, ok sweetie.
Me: In total shock in the different tone and way she is speaking to me say, ok thank you!
I COULD not believe the change that she did with me! A small simple card changed her whole way of treating me! I thanked my Heavenly Father right then and there and knew if I am to talk with this doctor next week it was all HIS doing!
An hour later the recepionsist calls me-
Recepionist: Hi karmann, I just got off the phone with Dr. Levy! She told me that she wants me to copy all the medical records that we have of yours and to give them to you for free. She wants you to come back down today to the office and pick them up at your earliest convience. Dr. Levy wants these records in the mail today and wants you to be able to talk to the doctor in Texas on Tuesday.
Me: Wow, thats great! I will see you in a few hours
Recepionist: Ask for me and I will come out and give you the package. thanks and see you in a little while.
Get off the phone DUMBFOUNDED!!!! Oh my GOSH!!! I am going to have ALL my records in my hands free of CHARGE and able to send them TOdAY!!! I cant believe this! What a change of circumstances in just few short hours!
I go down to pick up the records and ask for Sharron W. She comes into the lobby and gives me the bIGGEST HUG and says is this KARMANN!!! She takes me out to the hall and gives me the package of about 100 pages of records and tells me not to tell anyone that I got these copied.
She then tells me that Dr. Levy wants me to call her if I have ANY questions, concerns, or needs and I am to do whatever you need! She then tells me
Dr. Levy Loves you! I want to show you something. She then opens up my chart and shows me the emails that she has written back and forth to her friend in Texas. They are so genuine and so sweet. She talks about her great concern for me and wanting to do all that she can to help me. She is not just a FRIEND to this doctor but they are VERY close. They sign the emails with love and give your kids and family members hugs from me.
It was all I could do to keep the tears from rolling down my face. It was so sweet and so sincere and all of this was happening because of her.
I took my records and told her thankyou and sent them FEDEX and they got there Thursday.
Tuesday December 7, 2010 @ 7 in the morning.
The doctor calls and breaks my problems down to 3 areas
1. HORMONES- My hormones are NOT where they should be for a girl my frame, weight, and metablolism. He stated that the doctors told me I was in the normal range but he then says when I look at normal range and then look at KARMANN your levels are NOT in normal range for Karmann. He told me my PROGESTRONE is super low and I would NEVER be able to carry a baby with my levels. He then went on to the ovulation part. He said YEAH all the doctors tell you YOU ARE GOLDEN you OVULATE and have a great LH SURGE! You get that beautiful pink line on the ovulation sticks but when I look at the levels of hormones broken down that go along with your surge there are SERIOUS problems!! Previous doctors have not looked carefully at KARMANN's norms and just put you in the NORMAL range. He said with my history of miscarriages all this was a HUGE red flag for him. Next he talked about my thyroid. He said I am borderline in the normal range which makes him think again I am not where I should be. SO,.............I have to do A lot of BLOOD work again since the last tests he has are from June of 09 and then he thinks he will put me on HSG shots along with progestrone. He told me I should have NEVER been put on Chlomide!!!!! My body, hormones, and weight only was harmed by CHlomide and I need HSG. He told me he will only have me do the shots on 12, 13, 14 not 2-16. He wants ONE healthy egg not 5! WHEW!!!
2. He wants me to do a couple more tests with the auto immune system just to rule out if I will need to be put on Cortizone as well or not.
3. Dealing with the NK cells and the shared DQ/ALPHA genotype that Ryan and I both have. He went over the history and background of IVIG therapy and how is it used for so many different treatments. he talked about how there has been NO ONE that has gotten HIV or any other Blood Diesease from it because the blood is acid burned ( steralized) before it is put into any patient. He said that there is another product called Introlipid 20 that is a steriod and has nothing to do with blood. He said it is a lot cheaper and doesnt have the side effects as IVIG thearpy does. He told me he thinks RYan and I are a candidate for that treatment first and then if it doesnt work then we can go to the next level which is IVIG therapy. Since it is a steriod and I dont need to have him do it at this time I DO NOT need to go to Dallas to have him treat me. He is going to work with Dr. Levy and direct her on the path that he would like me to go and walk her through the steps and results and primarily she will be my care taker! Also the INTrolipid stuff is range of 100-400 dollars rather than 2200!~~ Such a big difference and WAY doable!!!
He then ends the conversation with
You are not crying are you?
I tell him no
He says good cause I am not crying
You can not cry if I am not crying
Because if I am crying then that means there is NO hope
and sweetheart there is LOTS of hope!
You will bring your little one here and its going to be ok
He then tells me that he wants to see what my XRAY flims look like from AZ and then will write up a recommendation letter to Dr. Levy and we can get started.
Friday December 10
I called the Texas office to make sure that they got my flims. They did and the nurse tells me that she has sent the recommendatons to Dr. Levy and also sent me one via mail as well.She also mentioned that Dr. Cohen called Dr. Levy and talked with her personally as well. Dr. Levy's office called about three hours later and told me that we would start the blood work up on Day 3 of my next cycle.
They are testing:
Progestrone, LH, FSH, Free Testostrone, testostrone, free t4, DHEAS, Vitamin D-25 hydroxy, Folic acid, Vitamin B-12, fasting glucose and insulin, random prolactin, anti-thyroid antibodies, anti nuclear antibodies and quantitative IgA.
It took 10 viles of blood to get all that in but it will be worth to see what is going on.
I have to do another Hystoscopy in January. So that should be lots of fun! The next few months or so will be lots of work up stuff before we acutally start the treatments.
I cant BELIEVE how everything came together in such a matter of hours for me to get to talk to this doctor and get all my questions answered! I am feeling so blessed as I dont have to go to texas and the treatments are so much cheaper than I thought.
I CANT BELIEVE how a simple card CHANGED everything and got the ball rolling.
You CANT deny the spirit and you CANT deny that Heavenly Father is in CHARGE. I am truly blessed and feel so luck to have the GOSPEL in my life!
I am not going to Blog about this for a while now. I am one for surprises. I dont want to leave all of you hanging but I am going too. I feel that this chapter in my life is coming to a close and I hope to start the next chapter with sharing with you good news! Until then you will be reading blog posts of things that Ryan and I have been up too. Unless something happens that needs to be addressed I hope the next time I talk about all of this the ending is a HAPPY POST with you know what!
Thanks again for all of you love, support, and encouraging comments! It has meant more than you WILL EVER KNOW!!!
Comments
Br & Sr Weinert