Sunday, January 22, 2012

January 23, 2010

This is a day I will never forget… just like the day I got married, the day my mom died, the day Nicole was born and many other important days in my life whether good or bad.

It was this day that changed our lives forever. It was this day when we found out that our precious daughter had been born with a congenital heart defect and because it wasn’t diagnosed for 15 years it led to another rare heart condition as well as a rare lung disease. At this point, there is nothing that can be done to correct the heart defect because of her lung disease and unless the heart defect is correct it will not help her lung disease. All they can do is give her a cocktail of medication that will slow down and hopefully stop (for now) the progression of her lung disease but at this time will not cure it. This event started off a domino effect. It is very apparent that Rick lost his job because of Nicole’s health issues but of course we have no proof of this.

The Bible says that all things work for the good for those that love the Lord. I say this over and over and still don’t see how some of the difficulties we have had since this day have worked out for the good. It has been a struggle for me to come to terms with the fact that my daughter isn’t going to get better she remains stable and I am so very grateful for this but she won’t get better which is what I want more than anything else in this world. I am not strong enough to go through what the doctor’s have told me she will go through with this illness.

I have struggled with being content for a long time it just never seems like I am happy with what I have. I was watching Joyce Meyer the other day and she said “Contentment doesn’t come from what you own it comes from your relationship with God.” I never thought of it that way… maybe it isn’t the stuff I am discontented with and it is God because he has done this to my daughter and my family. She also said “contentment comes from no longer needing to impress people” I haven’t arrived there yet but I will strive for that.

I won a book of my choice from Denise Brown from  and I chose “Take Time” I was looking at it and I have to rate my level of happiness and I have been thinking about this since Friday when I received the book. I don’t think that I’m that unhappy I just think that I’m discontent and I feel that there must be more. I feel that I finally know my calling which is to be a voice for my daughter, her illnesses, and for caregivers and my vision of these things have not happened the way that I want and/or thought they would. It is so hard to explain.

I hope that I will be able to stay positive on this day and not try to look at it as the day my life (and my family’s) fell apart even though it is. My mom passed away in April 1998 (she was diagnosed, had surgery and died during this month) and I can tell you every year I would say I hate April and then in April of 2009 I found out I had carcinoma in-situ and I thought you know I can’t continue to hate April. I have to let it go and you know in 2010 I was sad on the day of my mom’s passing but I didn’t focus on the other bad days in April.

Thank you for listening to me ramble and I hope that I made some sense.

Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
"If you don't like something change it, if you can't change it change the way you think about it."

Sunday, January 15, 2012


Trish inspired me by her post about 2011 on I can brag and say that I'm later than she is! I meant to get this done earlier but it has been a busy start to 2012.

I don't think I achieved as much as Trish but we had some good times/accomplishments. The year started out in January with finding out that Nicole had been chosen as United Therapeutics patient of the year. They manufacture several of the drugs for pulmonary hypertension. They have an annual marketing meeting each year at a different location. For 2011 it was Honolulu, Hawaii. We spent five days at a resort. It was awesome. I had always, since I was a little kid, dreamed of going to Hawaii. Didn't like the flying part though. As a result of this, someone in the company donated to Nicole a brand new Macbook Pro.

In March I believe I found this wonderful site called  and started blogging. I am so blessed to have made so many wonderful friends.

I won the caregifter award on in May and enrolled in Penn Foster's pharmacy technician program. I need to have this completed by May 9th of this year. I hope that I will make the deadline. I was on  the radio show that Denise Brown does through shortly after that to talk about the award and a little about my caregiving experience.  I really enjoyed the experience.

We filed bankruptcy in August which was discharged in December. It is an embarrassing and humiliating experience especially when it is your second time. I will not get into credit card debt again!

Around September or so, I officially became a peer mentor for United Therapeutics where I help and counsel people who are starting on Tyvaso. In November, I had my first speaking gig in which I spoke as a caregiver. It was the first time a caregiver has ever spoke.

Nicole had her first article published in the Pathlight magazine which is put out by PHA. It was her story of being a teenager with this disease along with the article was her picture and a piece of  her artwork.   I was very proud. She also had a piece of artwork in another addition that was a puzzle for the children in which you had to find the differences between the two pictures. It is my understanding that she will have another one of these drawings in the newest magazine that comes out later this month.

We started attending the local PH support group here and Nicole was asked to be the official photographer for the group. Nicole is an excellent photographer. I want to download some of her pictures but haven't gotten to it. She is also going to be in charge of all the literature that is at the meetings about PH and PHA.

We had a wonderful holiday and even though the days are long and hard we are truly blessed.

I have decided that at the end of each month I will write a synopsis of that month so next year at this time I will be able to look back and see exactly what I accomplished.

Friday, January 6, 2012

Trip to Gainesville

Yesterday we went for our quarterly appointment at Shand's Hospital.  One of  Rick's customers at work had told us about a different route to take that was quicker and would take 2 hr. 5 min. as opposed to 2 1/2 hours the way we had been going.

We left about 7:35 a.m. as we had a 11:00 a.m. appointment and boy was it cold.   We never know what the traffic will be like etc. so we must make sure we have ample time.

We stopped about 8:45 a.m. or so to grab some breakfast at a rest stop that had dunkin donuts :o) .  We hit the medical plaza in Gainesville about 10:05 a.m. but once we parked and got to the clinic it was 10:20 a.m. It was very busy and I thought great we will be here all day.  I heard a nurse telling another patient that there's actually 12 clinics going on.  I was happy to hear that they all weren't for the heart/lung clinic.

Nicole was called for her vitals as I talked to a lady regarding medicaid.  She told me to pick a plan ASAP because Medicaid would without any notice stick her in a HMO.  I was grateful for this information so this is on my to due list for next week.  Medicaid has that we still have Rick's insurance that expired on 10/31/11 and all Medicaid has to do is look this up which takes two minutes.

I was upset because I had received an Ipad for Christmas specifically to keep all my medical notes/reports etc. on for her appointments.  I am using evernote for this but what I didn't realize is that you need an internet connection to get any of the notes to come up and without Wifi this isn't possible.  I don't know how to remedy this.   I didn't know Shand's password and I must have been in a timid mood because I was to scared to ask and I also was too scared to ask a lady in the waiting room where she got her pill box which I really liked.  I really regret it as on the trip back one of  the pill compartments popped open and I lost her medication at the bottom of her backpack and the pill is very small.

I was also upset because I forgot to bring a copy of  Nicole's blood test results from last week.  I have it in Evernote but didn't have it in the packet of  papers for the doctor. Nor did I have a hard copy with me nor did I find it on my desk this morning so I will have to hunt for it to fax to them.

Nicole had an EKG followed by her echo.  I was asked if Nicole would be interested in taking part in a voluntary 3 year observational study to determine if  Tyvaso causes more respiratory problems than the other meds.  She will be asked questions every three months and will be paid $50. She accepted this and we signed paperwork.

The doctor is so good with Nicole.  He loves her artwork and always looks at it on her Itouch every time we are there.  He showed her a picture on his phone of two dogs and asked her if she could draw them for him if he sent her the picture.  He even said he would pay her.  He asked for her email address and I gave it to him.

The doctor said her heart function was great :o)  Didn't really address her PH other than to say there was no change in her echo/EKG.  I asked about her oxygen intake to make sure that since we are switching oxygen companies she didn't need a high flow concentrator as the company we want to go back to doesn't have them.  The RT (respiratory therapist) at rehab feels that she should be on more oxygen then 3 lpm when she's home.  He said it doesn't make a difference whether she's on 3 or 8 lpm.  He asked Nicole if the 8 lpm that she uses at rehab bothered her and she said yes (it does, she sneezes and gets really stuffed up) and he said she didn't need to be on that high flow.  I said her O2 stats will drop and he said that was okay.  He believes that her low O2 stats are more to do with her hemoglobin being low.  For Nicole when she has this tested we should be seeing a higher number that what it should be according to the labs scale and we are not. The scale is approximately 11 - 15 depending on the lab and she should be above 15 and she isn't.   He wants to get to the bottom of why and I believe for some reason  her bone marrow isn't producing the right amount of hemoglobin.  He had the nurse take blood to do a test that measures a hormone or something in the kidney which will tell them if it is low and her body doesn't make enough if this is the case they can give her medication to raise this level which will raise her hemoglobin.  I think she had this test done already by the hemotologist but I  didn't have that lab result with me nor did I have it scanned.  I should have because I had received this since her last appointment in Gainesville.  I know the hematologist tested her for  IBP or something to that effect and said it was normal.  It was also recommended by her rheumatologist that she have genetic testing to see if in fact her benign hypermobility joint  syndrome is indeed Ehler's - Danlos syndrome which can only be diagnosed through genetic testing.  I am very scared of this test and I am afraid they will tell us something else is wrong with Nicole.  Some rheumatologist and genetist (spelling) believe the BHJS is in fact the same as Ehler's - Danlos.   We need to know because if she has it she has to be treated.  Right now the only treatment for her joint pain is Advil and Biofreeze.  This will be another "thing" that she was born with that the doctor's just poo-pooed away.   This test will take 2 months to get the results.  I guess I will just wait and see what happens with this before I take her to a rheumatologist because unfortunately I don't think the one she was seeing takes Medicaid.  I hope Medicaid pays this.

The social worker also talked to me about Medicaid and my options as well as what to do when Nicole turns 18 and what I need to have in place such as power of attorney so I can speak on her behalf.  I will also need to get an advance directive so that whatever wishes she has will be followed.

While I always hope for a report of she cured... I am happy with the appointment.  However, I still have some doubts about the doctor.  I feel that he is too conservative.  I am hoping I can get a second opinion.   The doctor I would like to see ( who both Nicole and I have met after a presentation at the support group meeting ) but I don't know what forms of medicaid he takes, nor do I know if he will see a minor.  He says he will but it isn't always up to him when he is affliated at a hospital.  The cardiologist was suppose to find this information out but obviously they haven't ... just another reason to do things myself :o)