I've been in a funk this week. I haven't been sleeping well which is something I usually don't have a problem with but for the last week I either can't fall asleep or can't stay asleep. I'm not sure why this is. I'm thinking it is because I have altered my evening routine which is watching an hour of TV with Nicole usually until about 9:00 p.m. then I check facebook, email and plan for tomorrow. After her last dose of medicine I clean the machine and get it ready to for tomorrow. At this time I usually start water boiling for tea which I have while I read a book for about 20 minutes before I go to bed. I stopped doing this and believe maybe this is one of the reasons.
I have been a little depressed/sad because November around Thanksgiving is when my Grandma died and also a very good friend/neighbor of mine died. I also think about (which I really shouldn't) whether this could be our last holiday together as a family. I'm not looking forward to Christmas because it will be tight in the gift giving area which isn't the meaning of Christmas but still I feel bad as I won't be able to give like I will be given to. I don't think that I have looked forward to Christmas since last year which was the year Nicole was diagnosed.
I have been very stressed out trying to switch over insurance coverage for Nicole and coming down to the wire with running out of a couple of her medications because the doctor's office didn't do their job properly. I am seriously thinking of not returning to their office anymore but I don't want to negatively impact Nicole's treatment.
I've been a little upset with myself because I feel that God has put a call on my life and I don't feel that this is unfolding I guess the way I feel that it should. I have felt pretty much invisible for the majority of this year. I don't have friends call or come over like they use to and feel as though I am being swallowed up by Nicole's medical issues.
I know the Bible tells us we are not to worry as it will not add one day to our lives and I really, really do try to do this but with Nicole being so ill, having no insurance for Rick and I, and our finances being so tight along with other issues I can't help but worry for the future for Nicole and Rick and I.
I think what happens is when I get a lot of issues going on like I have this month with the insurance I get overwhelmed and then I get in a very negative pattern of thinking and I think that is what has happened. I have to turn around and get the positive back. I think some of it is the fact that I think more about myself than I do about what I can do for others.
I look forward to climbing out of the funk.
Sunday, November 27, 2011
Monday, November 14, 2011
PHorum Speech
I was asked to speak at a dinner of PH patients, caregivers and nurses as my role as a caregiver. This is the speech.
Hi my name is Jane Northrop and I a PAH caregiver for my daughter Nicole who is in the audience with her dad/my husband Rick. I am also a Peer Network Mentor. The PEER Network is a nationwide group of people with PAH that are currently receiving or caring for someone taking Remodulin or Tyvaso and volunteers to share their experiences with others.
PEER Network is a free program sponsored by the same company sponsoring this event which is United Therapeutics.
There's a card in your packet and I would encourage you to visit the web site or call so you can gain real-life perspectives from other Mentor's like me and learn more about what it's really like to take these medicines and how it can fit into your daily routine.
I volunteer as a PEER mentor so I can help others like I have been helped. To connect with others so they never feel as isolated as I did when Nicole was first diagnosed. It was several months of trying to find information about PAH and others with the disease before I finally found PHA. I can't change Nicole's illness so I combat the helplessness by being a PEER mentor and being a voice for Nicole whether it is on Facebook, writing on my blog, writing on the caregiving site or speaking.
For us it can be a challenge some days to fit in the four treatments of Tyvaso. I have to plan her treatments around whatever activities we have for the day which determines if we have to take it with us or not. So far we have managed very well and rarely do we not get in the four treatments.
We live in Longwood which is between Orlando and Daytona Beach. Rick works with his brother at an auto-repair shop. I homeschool Nicole who is 17 and in 11th grade. I am enrolled it the pharmacy technician program through Penn-Foster which is a distance learning school. I enjoy cross-stitching, crocheting, reading and writing. Nicole is a very talented artist and photographer.
I have noticed as far back as 2 years old that Nicole would struggle to breathe after exertion. Her doctor told me everything was fine. He would also imply that I was paranoid and over-protective.
Her fingernails have been purple ever since I could remember. At 6 years old she was diagnosed with exercise induced asthma. She also has severe allergies to dust mites which she took weekly shots for two-three years.
In 2009, I started noticing that she was struggling more with exercise. She didn't have the stamina to ride her bike and would stop and rest. She would also put her hand on her heart. Honestly, and I feel so bad for feeling this way, I thought she was being lazy and didn't want to exercise and/or being over dramatic. I wish that I had taken her more seriously.
On Jan. 21st, 2011 I took her for an annual check up. I was going to get answers for her purple fingernails and her shortness of breath. The first thing the doctor did was put a pulse ox on her finger which read 79. He thought his machine was broke so he got another one and it read 82. I will never forget when he said "this isn't good." He said he would set up an appointment for me with a cardiologist. That afternoon I got a call from the cardiologist.
On Jan. 22nd, 2011 we saw the cardiologist for an EKG and echo. It was at this time that she was diagnosed with a large VSD (a hole between the right and left ventricle), Eisenmenger's and PAH. I don't remember much of what the doctor said. I remember thinking, okay, I wasn't crazy all these years. I also thought we could "fix" everything. I felt like I was kicked in the chest that day and that our whole world collapsed. I felt this way again a few days later when I received the report from the doctor which said things in it that he didn't tell us at the appointment. I knew in this moment that this wasn't going to be "fixable". A word about pulse ox's. All it took was a pulse ox reading to get her to a cardiologist but these aren't routinely used at a doctors appointment.
On Feb. 2nd, 2011 we had the right heart catherization which confirmed that she had severe PAH with pressures around 90-100. She was kept overnight to monitor her blood pressure and started on Revatio. We left St. Joseph's in Tampa with O2 and an appointment with a respiratory therapist when we got home.
In August she was referred to the Heart and Lung Transplant Center at Shand's Hospital at the University of Florida in Gainesville. The doctor decided to change her meds in hope of a better "quality of life". I really dislike this statement because to me it is void of hope. We would switch from Revatio to Adcirca for convenience, Tracleer to Letairis as he thought this would be more beneficial and Tyvaso as an alternative to the IV meds.
I think the first and most dramatic improvement I saw upon starting Tyvaso was the change to her breathing. She didn't seem to breathe so hard and struggle so much. Her stamina has improved also. Overall, I am very please with the results of Tyvaso.
When I called the Adcirca program from their co-pay card to ask about Patient Assistance for cost of the medication I was told it wasn't offered for minor children because the drug wasn't approved for minors by the FDA and they didn't want the liability.
I had previously spoken with another Peer mentor, Colleen, who I was also facebook friends with as well as on an online support group through PHA. I was so upset that I sent her an email venting my frustrations at both Adcirca and United Therapeutics. She asked is she could forward it to her contact at UT. I said "sure" and forgot about it. A couple of weeks later I received an email from a senior VP within UT. My email to Colleen had landed on his desk. He wanted to know what he could do to resolve the problem. I had already decided that Nicole would stay on Revatio as I wasn't going to go through all the stress for a drug of convenience. A phone conference was set up with the VP. A week or so after my phone conference I got a call from Adcirca telling me that they had changed their policy and they would now offer assistance for minor children. I asked if this applied to everyone or just to Nicole and she said everyone.
In January I received an email from another VP in UT asking if he could have a phone conference with me about my interaction with the other VP. UT has an annual Global Sales Meeting where they invite a patient that has been helped in some way by UT. They asked Nicole to be that patient. They wanted us to surprise this VP by appearing at this meeting which was in Honolulu. It was a wonderful experience and one my family with always remember.
As a caregiver we have a different set of issues that the patient does. We have to watch our loved one be sick and suffer side effects from medicines etc. The loss of expectations for that person and their life. Being on call 24/7. Also the feelings of responsibility for their care and well-being and for me the feelings of guilt.
There's the loss of social activities. I can't make the commitments that I use to because I don't know what Nicole's day will be like. I have to tweek a lot of things every day just to work around how Nicole feels, I also don't have the time to do the things that I enjoy as much.
With my experience with UT and our medication issues I learned that one person can make a difference. We must keep fighting for our caree. We must keep hope and faith in a cure for PH and for the treatments that we have to fight the disease. We must never give up. Sometimes I feel like a meany or a pest when I call the doctor's so much that they know my voice and I don't even have to tell them who this is. I will continue to fight for and be a voice for Nicole for as long as I am here to do so. Do I get tired and want to give up? Absolutely, some days are lousy and I feel that I just can't continue but each day is a new day and we can start all over again.
For caregivers we carry a lot of stress and the weight of the world is on my shoulders some days but for me I have to have faith and hope in God.
Earlier this year I entered an essay contest on facebook for a page called PHAmerica Honors that was created by Brenda Reynolds whose niece lost her battle with PH at 22 years old. She remains a voice in the PH community in honor of her. She with PHA had this contest to choose ambassadors to spread awareness for PH. There were six categories or so stemming from children, newly diagnosed, caregivers etc. I was encouraged by a couple of facebook friends to enter so I did and my essay won in the caregiver category. They also made Nicole honorary ambassador for her age group because they had no entries. The judges felt a mother/daughter team would be cool.
I will close with a quote from this essay " I must remain positive for no other reason that for Nicole. I will always be her voice and advocate no matter how old she is. I will be with her every step of the way on this journey holding her hand. Every day cherish the moments that you have and look for the good in them. I wish more people (including myself) would realize this before they or a loved one are faced with a serious illness."
Hi my name is Jane Northrop and I a PAH caregiver for my daughter Nicole who is in the audience with her dad/my husband Rick. I am also a Peer Network Mentor. The PEER Network is a nationwide group of people with PAH that are currently receiving or caring for someone taking Remodulin or Tyvaso and volunteers to share their experiences with others.
PEER Network is a free program sponsored by the same company sponsoring this event which is United Therapeutics.
There's a card in your packet and I would encourage you to visit the web site or call so you can gain real-life perspectives from other Mentor's like me and learn more about what it's really like to take these medicines and how it can fit into your daily routine.
I volunteer as a PEER mentor so I can help others like I have been helped. To connect with others so they never feel as isolated as I did when Nicole was first diagnosed. It was several months of trying to find information about PAH and others with the disease before I finally found PHA. I can't change Nicole's illness so I combat the helplessness by being a PEER mentor and being a voice for Nicole whether it is on Facebook, writing on my blog, writing on the caregiving site or speaking.
For us it can be a challenge some days to fit in the four treatments of Tyvaso. I have to plan her treatments around whatever activities we have for the day which determines if we have to take it with us or not. So far we have managed very well and rarely do we not get in the four treatments.
We live in Longwood which is between Orlando and Daytona Beach. Rick works with his brother at an auto-repair shop. I homeschool Nicole who is 17 and in 11th grade. I am enrolled it the pharmacy technician program through Penn-Foster which is a distance learning school. I enjoy cross-stitching, crocheting, reading and writing. Nicole is a very talented artist and photographer.
I have noticed as far back as 2 years old that Nicole would struggle to breathe after exertion. Her doctor told me everything was fine. He would also imply that I was paranoid and over-protective.
Her fingernails have been purple ever since I could remember. At 6 years old she was diagnosed with exercise induced asthma. She also has severe allergies to dust mites which she took weekly shots for two-three years.
In 2009, I started noticing that she was struggling more with exercise. She didn't have the stamina to ride her bike and would stop and rest. She would also put her hand on her heart. Honestly, and I feel so bad for feeling this way, I thought she was being lazy and didn't want to exercise and/or being over dramatic. I wish that I had taken her more seriously.
On Jan. 21st, 2011 I took her for an annual check up. I was going to get answers for her purple fingernails and her shortness of breath. The first thing the doctor did was put a pulse ox on her finger which read 79. He thought his machine was broke so he got another one and it read 82. I will never forget when he said "this isn't good." He said he would set up an appointment for me with a cardiologist. That afternoon I got a call from the cardiologist.
On Jan. 22nd, 2011 we saw the cardiologist for an EKG and echo. It was at this time that she was diagnosed with a large VSD (a hole between the right and left ventricle), Eisenmenger's and PAH. I don't remember much of what the doctor said. I remember thinking, okay, I wasn't crazy all these years. I also thought we could "fix" everything. I felt like I was kicked in the chest that day and that our whole world collapsed. I felt this way again a few days later when I received the report from the doctor which said things in it that he didn't tell us at the appointment. I knew in this moment that this wasn't going to be "fixable". A word about pulse ox's. All it took was a pulse ox reading to get her to a cardiologist but these aren't routinely used at a doctors appointment.
On Feb. 2nd, 2011 we had the right heart catherization which confirmed that she had severe PAH with pressures around 90-100. She was kept overnight to monitor her blood pressure and started on Revatio. We left St. Joseph's in Tampa with O2 and an appointment with a respiratory therapist when we got home.
In August she was referred to the Heart and Lung Transplant Center at Shand's Hospital at the University of Florida in Gainesville. The doctor decided to change her meds in hope of a better "quality of life". I really dislike this statement because to me it is void of hope. We would switch from Revatio to Adcirca for convenience, Tracleer to Letairis as he thought this would be more beneficial and Tyvaso as an alternative to the IV meds.
I think the first and most dramatic improvement I saw upon starting Tyvaso was the change to her breathing. She didn't seem to breathe so hard and struggle so much. Her stamina has improved also. Overall, I am very please with the results of Tyvaso.
When I called the Adcirca program from their co-pay card to ask about Patient Assistance for cost of the medication I was told it wasn't offered for minor children because the drug wasn't approved for minors by the FDA and they didn't want the liability.
I had previously spoken with another Peer mentor, Colleen, who I was also facebook friends with as well as on an online support group through PHA. I was so upset that I sent her an email venting my frustrations at both Adcirca and United Therapeutics. She asked is she could forward it to her contact at UT. I said "sure" and forgot about it. A couple of weeks later I received an email from a senior VP within UT. My email to Colleen had landed on his desk. He wanted to know what he could do to resolve the problem. I had already decided that Nicole would stay on Revatio as I wasn't going to go through all the stress for a drug of convenience. A phone conference was set up with the VP. A week or so after my phone conference I got a call from Adcirca telling me that they had changed their policy and they would now offer assistance for minor children. I asked if this applied to everyone or just to Nicole and she said everyone.
In January I received an email from another VP in UT asking if he could have a phone conference with me about my interaction with the other VP. UT has an annual Global Sales Meeting where they invite a patient that has been helped in some way by UT. They asked Nicole to be that patient. They wanted us to surprise this VP by appearing at this meeting which was in Honolulu. It was a wonderful experience and one my family with always remember.
As a caregiver we have a different set of issues that the patient does. We have to watch our loved one be sick and suffer side effects from medicines etc. The loss of expectations for that person and their life. Being on call 24/7. Also the feelings of responsibility for their care and well-being and for me the feelings of guilt.
There's the loss of social activities. I can't make the commitments that I use to because I don't know what Nicole's day will be like. I have to tweek a lot of things every day just to work around how Nicole feels, I also don't have the time to do the things that I enjoy as much.
With my experience with UT and our medication issues I learned that one person can make a difference. We must keep fighting for our caree. We must keep hope and faith in a cure for PH and for the treatments that we have to fight the disease. We must never give up. Sometimes I feel like a meany or a pest when I call the doctor's so much that they know my voice and I don't even have to tell them who this is. I will continue to fight for and be a voice for Nicole for as long as I am here to do so. Do I get tired and want to give up? Absolutely, some days are lousy and I feel that I just can't continue but each day is a new day and we can start all over again.
For caregivers we carry a lot of stress and the weight of the world is on my shoulders some days but for me I have to have faith and hope in God.
Earlier this year I entered an essay contest on facebook for a page called PHAmerica Honors that was created by Brenda Reynolds whose niece lost her battle with PH at 22 years old. She remains a voice in the PH community in honor of her. She with PHA had this contest to choose ambassadors to spread awareness for PH. There were six categories or so stemming from children, newly diagnosed, caregivers etc. I was encouraged by a couple of facebook friends to enter so I did and my essay won in the caregiver category. They also made Nicole honorary ambassador for her age group because they had no entries. The judges felt a mother/daughter team would be cool.
I will close with a quote from this essay " I must remain positive for no other reason that for Nicole. I will always be her voice and advocate no matter how old she is. I will be with her every step of the way on this journey holding her hand. Every day cherish the moments that you have and look for the good in them. I wish more people (including myself) would realize this before they or a loved one are faced with a serious illness."
Thursday, November 3, 2011
The story of Nicole's life
For Pulmonary Hypertension Awareness Month I thought that I would write the story of Nicole's life to raise awareness and maybe help someone else. So here goes... warning.... this is long.
When I found out that I was pregnant with Nicole it was one of the happiest days of my life. We had tried for seven long years with many tears on my part before I gave it over to God.
I had an uneventful pregnancy except for throwing up every day of it. I had a sonogram at 12 weeks. They couldn't tell the sex at that time but I always knew that it was a girl. I wanted another sonogram but the doctor said that unless it was medically necessary the insurance company wouldn't pay for it. I really, really felt I needed a sonogram and didn't have peace about it but squashed that. I should have paid for it myself.
I woke up early on Sept. 23rd and was all wet. I thought I had peed my pants because I was too lazy to get out of bed. I got cleaned up and went and laid down on the couch a little longer before I had to go to work. I kept feeling wet though. When Rick woke up he made me call the doctor who told me to go to the hospital. My water had started to break but I wasn't having any contractions. When the doctor got there to do an exam is when my water "officially" broke. They had to induce labor. Nicole was born 5 weeks premature and while she only weighed 4 lbs. 13 oz., there was no indication that anything was wrong.
In my opinion, it seemed like Nicole was sick a lot and I was always at the doctor's office. Nicole would always cry and scream when she saw the doctor. Rick didn't like him either but I was okay with him. As time went on, I started noticing that he didn't take my concerns seriously as he thought I was overprotective and paranoid.
Nicole didn't start talking until she was 2 years old. The doctor was concerned about this and her lack of social skills etc. When she was three or so he had me take her to the county school district for evaluation. They determined that she had a speech delay as well as some motor/social skill delays. It was recommended that I put her in daycare.
Around the time of her fourth birthday I took her to the doctor because she was running a fever again. When he came in the room Nicole, as always, started crying. He said to her "what is your problem? What are you crying for there are a lot of other kids much sicker than you are." I left his office that day never to return again.
I did put her in daycare against my own gut. The first faciility I put her in had a few incidents involving Nicole and I didn't like the way they handled it so I took her out. She was only going a half a day three times a week. Three days after she started daycare she got strep throat. A couple of weeks later she starting running a fever of close to 105. She had pneumonia based on a chest x-ray. She had to get shots in both legs and 10 days later had a follow-up x-ray which showed that the pneumonia was gone. I told the doctor at this time she had been stuffed up for two days and he said it was probably a cold. On Aug. 22nd in the middle of the night her fever spiked to 105.6. I could only get it down to 103. I called the doctor who told me to go to the ER and have them do a chest x-ray and he would meet us there. I carried her into the ER. They took her oxygen saturations level which were 80% which was attributed to her fever and whatever was causing it. She had double lung bacterial pneumonia. She was admitted to the hospital where she spent five days on oxygen and antibiotics. It was at this time that the doctor suggested that I keep her out of daycare. At this time they also found out that she had a severe allergy to dust mites. This was something I tried to tell the first doctor but he kept blowing me off. At six years old she was diagnosed with asthma because of the inflammation they kept seeing in her lungs via chest x-ray.
At seven years old we were seeing a gastroenterologist for constipation issues. He ordered an endoscopy. Prior to the procedure they did a CBC (complete blood count) which I don't recall them telling us they did but I'm sure they told me. During the procedure itself they did an EKG. On the report of the endoscopy the technician questioned something. On the actual EKG print out the cardiologist read it as normal.
At ten years old during the summer between 4th and 5th grade Nicole was attending a day camp at the local high school. It was during this time that I noticed that she became obsessive with germs and using hand sanitizer. I took her to a mental health counselor and psychiatrist. She was diagnosed with generalized anxiety disorder and OCD (obsessive compulsive disorder). Finally, a reason for the "melt-downs" that she had had over her life for sometimes little things. She was put on Zoloft.
After she finished 5th grade I started homeschooling her. She wasn't too happy about this at the beginning but before the year was up she loved it. I continue to homeschool her to this day and she is now in 11th grade.
I guess it was in 2009 that I really started noticing her purple fingernails even though I believe she has had them for years (even though not one of her many doctors ever mentioned it). I also noticed her getting colder faster and more often especially in the pool when her lips would turn blue I thought it was from coldness. I also noticed that she was having a harder time doing physical activity then she usually did.
On January 22, 2010 she was diagnosed with a large VSD which is a congenital heart defect and is basically a hole between the right and left ventricle's of the heart. She was also diagnosed with Pulmonary Arterial Hypertension which is a rare form of Pulmonary Hypertension. This was all diagnosed by a cardiologist after the doctor took a pulse ox reading the day before and it read 80% (normal reading should be between 95 - 98%). Imagine my shock and outrage to find out that she had a heart defect at birth and she was now 15 years old.
She immediately had a heart catherization to confirm the diagnosis. She had to spend the night in the hospital to monitor vitals after being put on Revatio for her PH. We were sent home with an overwhelming amount of information as well as oxygen which she would be on at night while she slept and whenever she was home. We have had so many changes between the medications (she was put on two more PH drugs), oxygen and specialists and just the knowledge of what life will be like for us as Nicole's parents and for Nicole as a 15 year old.
In Feb. 2011 she was diagnosed with Benign Hypermobility Joint Syndrome which may also be Ehler's - Danlos Syndrome which from the little research I have done is a rare genetic connective tissue disorder. The only way to get a true EDS diagnosis is with genetic testing. Unfortunately, this is something else she was born with. All her life she has suffered from joint pain and I was always told it was "growing pains" but once I got her diagnosis I took her to a rheumatologist as I just don't believe doctor's very much these days.
Sometime after this the cardiologist requested Nicole's records from her former gastroenterologist as she would be seeing another one for continued stomach pain. It was at this time we "officially" found out that the EKG at seven years old was in fact not normal nor would she ever have a normal EKG. We also found out about the bloodwork being all over the place and that she had been anemic at that time. None of this we were told.
Today, our life's are filled with doctor appointments, labwork, medications, oxygen, battles with insurance companies, social security, doctor offices for information etc. All of these things stem from a diagnosis that we should have known about from birth if not in utero.
Even with the pressures and complications of our life's I love my daughter with all of my being and it doesn't matter whether she is healthy or ill. I will go through all the tears and the heartache that I must go through just to keep her alive with us.
When I found out that I was pregnant with Nicole it was one of the happiest days of my life. We had tried for seven long years with many tears on my part before I gave it over to God.
I had an uneventful pregnancy except for throwing up every day of it. I had a sonogram at 12 weeks. They couldn't tell the sex at that time but I always knew that it was a girl. I wanted another sonogram but the doctor said that unless it was medically necessary the insurance company wouldn't pay for it. I really, really felt I needed a sonogram and didn't have peace about it but squashed that. I should have paid for it myself.
I woke up early on Sept. 23rd and was all wet. I thought I had peed my pants because I was too lazy to get out of bed. I got cleaned up and went and laid down on the couch a little longer before I had to go to work. I kept feeling wet though. When Rick woke up he made me call the doctor who told me to go to the hospital. My water had started to break but I wasn't having any contractions. When the doctor got there to do an exam is when my water "officially" broke. They had to induce labor. Nicole was born 5 weeks premature and while she only weighed 4 lbs. 13 oz., there was no indication that anything was wrong.
In my opinion, it seemed like Nicole was sick a lot and I was always at the doctor's office. Nicole would always cry and scream when she saw the doctor. Rick didn't like him either but I was okay with him. As time went on, I started noticing that he didn't take my concerns seriously as he thought I was overprotective and paranoid.
Nicole didn't start talking until she was 2 years old. The doctor was concerned about this and her lack of social skills etc. When she was three or so he had me take her to the county school district for evaluation. They determined that she had a speech delay as well as some motor/social skill delays. It was recommended that I put her in daycare.
Around the time of her fourth birthday I took her to the doctor because she was running a fever again. When he came in the room Nicole, as always, started crying. He said to her "what is your problem? What are you crying for there are a lot of other kids much sicker than you are." I left his office that day never to return again.
I did put her in daycare against my own gut. The first faciility I put her in had a few incidents involving Nicole and I didn't like the way they handled it so I took her out. She was only going a half a day three times a week. Three days after she started daycare she got strep throat. A couple of weeks later she starting running a fever of close to 105. She had pneumonia based on a chest x-ray. She had to get shots in both legs and 10 days later had a follow-up x-ray which showed that the pneumonia was gone. I told the doctor at this time she had been stuffed up for two days and he said it was probably a cold. On Aug. 22nd in the middle of the night her fever spiked to 105.6. I could only get it down to 103. I called the doctor who told me to go to the ER and have them do a chest x-ray and he would meet us there. I carried her into the ER. They took her oxygen saturations level which were 80% which was attributed to her fever and whatever was causing it. She had double lung bacterial pneumonia. She was admitted to the hospital where she spent five days on oxygen and antibiotics. It was at this time that the doctor suggested that I keep her out of daycare. At this time they also found out that she had a severe allergy to dust mites. This was something I tried to tell the first doctor but he kept blowing me off. At six years old she was diagnosed with asthma because of the inflammation they kept seeing in her lungs via chest x-ray.
At seven years old we were seeing a gastroenterologist for constipation issues. He ordered an endoscopy. Prior to the procedure they did a CBC (complete blood count) which I don't recall them telling us they did but I'm sure they told me. During the procedure itself they did an EKG. On the report of the endoscopy the technician questioned something. On the actual EKG print out the cardiologist read it as normal.
At ten years old during the summer between 4th and 5th grade Nicole was attending a day camp at the local high school. It was during this time that I noticed that she became obsessive with germs and using hand sanitizer. I took her to a mental health counselor and psychiatrist. She was diagnosed with generalized anxiety disorder and OCD (obsessive compulsive disorder). Finally, a reason for the "melt-downs" that she had had over her life for sometimes little things. She was put on Zoloft.
After she finished 5th grade I started homeschooling her. She wasn't too happy about this at the beginning but before the year was up she loved it. I continue to homeschool her to this day and she is now in 11th grade.
I guess it was in 2009 that I really started noticing her purple fingernails even though I believe she has had them for years (even though not one of her many doctors ever mentioned it). I also noticed her getting colder faster and more often especially in the pool when her lips would turn blue I thought it was from coldness. I also noticed that she was having a harder time doing physical activity then she usually did.
On January 22, 2010 she was diagnosed with a large VSD which is a congenital heart defect and is basically a hole between the right and left ventricle's of the heart. She was also diagnosed with Pulmonary Arterial Hypertension which is a rare form of Pulmonary Hypertension. This was all diagnosed by a cardiologist after the doctor took a pulse ox reading the day before and it read 80% (normal reading should be between 95 - 98%). Imagine my shock and outrage to find out that she had a heart defect at birth and she was now 15 years old.
She immediately had a heart catherization to confirm the diagnosis. She had to spend the night in the hospital to monitor vitals after being put on Revatio for her PH. We were sent home with an overwhelming amount of information as well as oxygen which she would be on at night while she slept and whenever she was home. We have had so many changes between the medications (she was put on two more PH drugs), oxygen and specialists and just the knowledge of what life will be like for us as Nicole's parents and for Nicole as a 15 year old.
In Feb. 2011 she was diagnosed with Benign Hypermobility Joint Syndrome which may also be Ehler's - Danlos Syndrome which from the little research I have done is a rare genetic connective tissue disorder. The only way to get a true EDS diagnosis is with genetic testing. Unfortunately, this is something else she was born with. All her life she has suffered from joint pain and I was always told it was "growing pains" but once I got her diagnosis I took her to a rheumatologist as I just don't believe doctor's very much these days.
Sometime after this the cardiologist requested Nicole's records from her former gastroenterologist as she would be seeing another one for continued stomach pain. It was at this time we "officially" found out that the EKG at seven years old was in fact not normal nor would she ever have a normal EKG. We also found out about the bloodwork being all over the place and that she had been anemic at that time. None of this we were told.
Today, our life's are filled with doctor appointments, labwork, medications, oxygen, battles with insurance companies, social security, doctor offices for information etc. All of these things stem from a diagnosis that we should have known about from birth if not in utero.
Even with the pressures and complications of our life's I love my daughter with all of my being and it doesn't matter whether she is healthy or ill. I will go through all the tears and the heartache that I must go through just to keep her alive with us.
Thursday, October 27, 2011
Food for Thought...
I have been reading this book called Handle with Care by Jodi Picoult. When I picked it up at the library I didn’t really look at what it was about etc. When I got home and I read what the book was about I wasn’t sure I could read it. There would be too many parallels with my life. Basically, it is about a little girl who has brittle bone disease. The mother sues the OBGYN for not catching it while in utero.
I was reading it today and came to this discussion between the OBGYN who is being sued and her husband. He starts talking about his brother who had committed suicide at age seventeen. He had found him. He goes on to say, “Back then no one knew the name for bipolar disorder, or how to take care of it. So for seventeen years my parents went through hell. My whole childhood was colored by how Steven was feeling…..” He then continues, “What if they had been told before Steven was born, that he was going to kill himself before his eighteenth birthday? Would they have taken those seventeen years to get to know him? To have those good times that came between the crises? Or would they have spared themselves – and me – that emotional roller coaster?”
I started crying reading this it really does hit home for me. I ask myself this same question. There’s no doubt in my mind that it wouldn’t have made a difference and I wouldn’t have terminated the pregnancy or anything like that but how would things have been different if we had known?
I think in terms of my relationship with Nicole things would have been much different. Have I taken for granted the time? Yes, I think I did… I feel I was always too busy for her and there was always something that needed to be done and I was always too busy thinking about that to really give her my whole attention. I was too hard on her and I always wanted her to do and be what I wanted her to be. I wish that it hadn’t taken a terminal illness to find this out.
I wonder what would happen if we treated all the special people in our life as though they had a terminal illness?
Have a blessed day!
Hugs:o)
Jane~mom to Nicole 17 yo, VSD, PAH, Eisenmengers, BHJS
I was reading it today and came to this discussion between the OBGYN who is being sued and her husband. He starts talking about his brother who had committed suicide at age seventeen. He had found him. He goes on to say, “Back then no one knew the name for bipolar disorder, or how to take care of it. So for seventeen years my parents went through hell. My whole childhood was colored by how Steven was feeling…..” He then continues, “What if they had been told before Steven was born, that he was going to kill himself before his eighteenth birthday? Would they have taken those seventeen years to get to know him? To have those good times that came between the crises? Or would they have spared themselves – and me – that emotional roller coaster?”
I started crying reading this it really does hit home for me. I ask myself this same question. There’s no doubt in my mind that it wouldn’t have made a difference and I wouldn’t have terminated the pregnancy or anything like that but how would things have been different if we had known?
I think in terms of my relationship with Nicole things would have been much different. Have I taken for granted the time? Yes, I think I did… I feel I was always too busy for her and there was always something that needed to be done and I was always too busy thinking about that to really give her my whole attention. I was too hard on her and I always wanted her to do and be what I wanted her to be. I wish that it hadn’t taken a terminal illness to find this out.
I wonder what would happen if we treated all the special people in our life as though they had a terminal illness?
Have a blessed day!
Hugs:o)
Jane~mom to Nicole 17 yo, VSD, PAH, Eisenmengers, BHJS
Sunday, October 23, 2011
Week in Review
It was a very long week for me. It seems like the days are long but time goes by quickly. I heard someone say this once and it is so true.
Monday started with a trip to Walmart. I have certain things that I buy at Walmart because they are cheaper etc. I really enjoy going as I go with my mother-in-law, Norma, and anytime I can spend time with her it's great. She is such a wonderful, kind person.
Tuesday was one of the few days we were home all day this month. I have been doing coaching calls with a life coach and Tuesday is my day for this call. I would highly recommend speaking to one if you can. I know that this has really, really helped me. The respiratory therapist from the oxygen company that supplies Nicole's oxygen tanks and concentrator came by to service the machine. He brought me supplies. I told him about our insurance ending on Oct. 31st and that Nicole would have Healthy Kids. I made the mistake of deciding to go to the Healthy Kids website around 9:00 p.m. to see the status of our account and to look up doctors. I was so upset that only two of Nicole's doctors as well as her counselor was on the list. I had a hard time getting to sleep from a headache from the stress. I should have listened to that little voice and waited. I try not to do anything related to Nicole's health issues in the evening if I can help it.
On Wednesday, Nicole had a gastroenterologist appointment. I decided prior to this I would try and call the insurance company used for Healthy Kids to get some idea of what was and wasn't covered especially pertaining to her oxygen needs, her monthly blood tests, and her medications. The doctor's are not the first priority as they will all be seen Oct. so doctor's unless there's an emergency don't come into play until January. The lady I spoke with was very nice but couldn't give me much information and suggested I call Healthy Kids to find out these answers who had already told me that I had to call the insurance company. I was so upset I was almost in tears. Which wasn't good because then I wasn't prepared like I should have been for her doctor's appointment. This is one of the doctor's that doesn't take Healthy Kids nor Medicaid for that matter. I like her so much and will probably pay out of my pocket to see her as she will only see Nicole through 2012 as she is pediatric. Nicole has been having some increased nausea and has started vomiting about once a week. She gave me a list of options that we could try from a medication called Zofron used for nausea which she didn't think would be good as a side effect is arrithymia (I know I spelled this wrong), she could take something like Tums, Maalox, Mylanta or she could take her current medication which is the generic for Prilosec twice a day rather than her current once a day. I said that this matter would be discussed with her PH specialist. I received in the mail this day four envelopes from the Dept. of Health with 17 pages of questions to fill out pertaining to Nicole's health issues. Uggh...
On Thursday, we left at 7:00 a.m. to head to Gainesville which is 2 1/2 hours each way to Shand's Hospital and Medical Center. We went to the hospital for Nicole to do a 6MW test. She has done two of these one in Sept and one in Oct at pulmonary rehab. She did better than she had done the week before by almost or even a little more than 100 feet and she had no oxygen this time. I watched her and was very proud of her. We then went down the street to the Medical Center to see the PH specialist, have her EKG and echo done. It was a good appointment. Both the echo and EKG were the same with no change which in our world is good news... sure, I want better news but this is good. I learned from the doctor that according to Nicole's diagnosis of Eisenmenger's she can't be denied SSI benefits and she has an automatic approval we will have to see about that. We also discussed her platelet and red cell issues. Her hemoglobin should be higher than it is due to her health and her platelet count is low. Her local cardiologist believes it is from an iron deficiency but her PH specialist who is also a cardiologist thinks there is something else that is suppressing her bone marrow production. He mentioned something about a test that measures a hormone produced by the kidney I believe. I will have to talk to the local cardiologist's nurse about this to get more information. He also said she could take the generic Prilosec twice daily. We then made it home about 4:00 p.m. with a wicked headache that I went to bed with very early.
Friday was another day that was spent at home. We have been having a taste of fall so I decided to wear sweats and t-shirt with no makeup .... yeah.... I had planned to called Healthy Kids and get some answers but just couldn't do this as after Gainesville I am always emotionally and mentally spent so I decided to get my list of questions down on paper and tackle it this coming week as my biggest priority along with some other issues pertaining to my grants I receive for her medications my only goal for the week. It seems like the majority of my time is spend on dealing with Nicole's medical issues. My phone didn't stop ringing. I have been taking a journaling class via phone through the caregiving website that I belong to so I did this. The cardiologist's office faxed me the report from the GI appointment on Wed. which is the fastest I have ever gotten a report from a doctor. I had to call the GI doctor to try to get the prescription changed to reflect 2x daily. She wasn't in the office and the prescription was for mail order 90 day supply which I have to mail to the company and had to get it out so it went through prior to end of month. I was questioning whether or not I had heard the doctor right about the dosage of 2x daily when her nurse seemed shocked by it. The other nurse and office manager called me also to follow up with me on the cost of an office visit to self pay and did confirm that she did mean take 2x daily. I said I would go ahead and fill the prescription and it would last 45 days and I would deal with a refill at that time. I also talked to the gentlemen who makes all the arrangements for a dinner that I will be speaking at in Nov. This will be a separate blog. It seemed like a long day and long week.
Saturday was grocery shopping day and I just haven't had the time to put into finding and matching coupons etc. so lately my grocery bill has been a little higher which must change. This is the only area in my budget that I have complete control over. I was looking for the no-skid socks as on Tuesday Nicole had fallen in the house either my tripping over her feet or her oxygen tubing and hit her head on the leg of her desk. We have tile which when wearing socks can be slippery. I looked in Target, Publix and TJ Maxx and couldn't find them. I will probably have to hit the mall. Norma (my mother-in-law) said there was a sock store someplace locally that she saw advertised on t.v. but couldn't remember what it was called. I know as we get closer to Christmas I should be able to find some. My neighbor who has been up in Illinois for the last six months just returned this week and she brought me some squash from her garden. This was very thoughtful of her. I received a letter from Healthy Kids saying who are plan provider was which I really knew already but it has a different number listed so hopefully Monday, but if not definitely Tuesday, I will be calling them to see if I can get answers if not I will call Health Kids and someone will give me accurate answers to my questions.
It seems that my to-do list doesn't get any shorter it only keeps getting longer but I will continue to plug away at the things that I need to attend to. I hope that the week ahead will provide the answers that I need at least for November and that I will know by the end of November before I have to pay the insurance premium again if Nicole is approved for SSI.
Monday started with a trip to Walmart. I have certain things that I buy at Walmart because they are cheaper etc. I really enjoy going as I go with my mother-in-law, Norma, and anytime I can spend time with her it's great. She is such a wonderful, kind person.
Tuesday was one of the few days we were home all day this month. I have been doing coaching calls with a life coach and Tuesday is my day for this call. I would highly recommend speaking to one if you can. I know that this has really, really helped me. The respiratory therapist from the oxygen company that supplies Nicole's oxygen tanks and concentrator came by to service the machine. He brought me supplies. I told him about our insurance ending on Oct. 31st and that Nicole would have Healthy Kids. I made the mistake of deciding to go to the Healthy Kids website around 9:00 p.m. to see the status of our account and to look up doctors. I was so upset that only two of Nicole's doctors as well as her counselor was on the list. I had a hard time getting to sleep from a headache from the stress. I should have listened to that little voice and waited. I try not to do anything related to Nicole's health issues in the evening if I can help it.
On Wednesday, Nicole had a gastroenterologist appointment. I decided prior to this I would try and call the insurance company used for Healthy Kids to get some idea of what was and wasn't covered especially pertaining to her oxygen needs, her monthly blood tests, and her medications. The doctor's are not the first priority as they will all be seen Oct. so doctor's unless there's an emergency don't come into play until January. The lady I spoke with was very nice but couldn't give me much information and suggested I call Healthy Kids to find out these answers who had already told me that I had to call the insurance company. I was so upset I was almost in tears. Which wasn't good because then I wasn't prepared like I should have been for her doctor's appointment. This is one of the doctor's that doesn't take Healthy Kids nor Medicaid for that matter. I like her so much and will probably pay out of my pocket to see her as she will only see Nicole through 2012 as she is pediatric. Nicole has been having some increased nausea and has started vomiting about once a week. She gave me a list of options that we could try from a medication called Zofron used for nausea which she didn't think would be good as a side effect is arrithymia (I know I spelled this wrong), she could take something like Tums, Maalox, Mylanta or she could take her current medication which is the generic for Prilosec twice a day rather than her current once a day. I said that this matter would be discussed with her PH specialist. I received in the mail this day four envelopes from the Dept. of Health with 17 pages of questions to fill out pertaining to Nicole's health issues. Uggh...
On Thursday, we left at 7:00 a.m. to head to Gainesville which is 2 1/2 hours each way to Shand's Hospital and Medical Center. We went to the hospital for Nicole to do a 6MW test. She has done two of these one in Sept and one in Oct at pulmonary rehab. She did better than she had done the week before by almost or even a little more than 100 feet and she had no oxygen this time. I watched her and was very proud of her. We then went down the street to the Medical Center to see the PH specialist, have her EKG and echo done. It was a good appointment. Both the echo and EKG were the same with no change which in our world is good news... sure, I want better news but this is good. I learned from the doctor that according to Nicole's diagnosis of Eisenmenger's she can't be denied SSI benefits and she has an automatic approval we will have to see about that. We also discussed her platelet and red cell issues. Her hemoglobin should be higher than it is due to her health and her platelet count is low. Her local cardiologist believes it is from an iron deficiency but her PH specialist who is also a cardiologist thinks there is something else that is suppressing her bone marrow production. He mentioned something about a test that measures a hormone produced by the kidney I believe. I will have to talk to the local cardiologist's nurse about this to get more information. He also said she could take the generic Prilosec twice daily. We then made it home about 4:00 p.m. with a wicked headache that I went to bed with very early.
Friday was another day that was spent at home. We have been having a taste of fall so I decided to wear sweats and t-shirt with no makeup .... yeah.... I had planned to called Healthy Kids and get some answers but just couldn't do this as after Gainesville I am always emotionally and mentally spent so I decided to get my list of questions down on paper and tackle it this coming week as my biggest priority along with some other issues pertaining to my grants I receive for her medications my only goal for the week. It seems like the majority of my time is spend on dealing with Nicole's medical issues. My phone didn't stop ringing. I have been taking a journaling class via phone through the caregiving website that I belong to so I did this. The cardiologist's office faxed me the report from the GI appointment on Wed. which is the fastest I have ever gotten a report from a doctor. I had to call the GI doctor to try to get the prescription changed to reflect 2x daily. She wasn't in the office and the prescription was for mail order 90 day supply which I have to mail to the company and had to get it out so it went through prior to end of month. I was questioning whether or not I had heard the doctor right about the dosage of 2x daily when her nurse seemed shocked by it. The other nurse and office manager called me also to follow up with me on the cost of an office visit to self pay and did confirm that she did mean take 2x daily. I said I would go ahead and fill the prescription and it would last 45 days and I would deal with a refill at that time. I also talked to the gentlemen who makes all the arrangements for a dinner that I will be speaking at in Nov. This will be a separate blog. It seemed like a long day and long week.
Saturday was grocery shopping day and I just haven't had the time to put into finding and matching coupons etc. so lately my grocery bill has been a little higher which must change. This is the only area in my budget that I have complete control over. I was looking for the no-skid socks as on Tuesday Nicole had fallen in the house either my tripping over her feet or her oxygen tubing and hit her head on the leg of her desk. We have tile which when wearing socks can be slippery. I looked in Target, Publix and TJ Maxx and couldn't find them. I will probably have to hit the mall. Norma (my mother-in-law) said there was a sock store someplace locally that she saw advertised on t.v. but couldn't remember what it was called. I know as we get closer to Christmas I should be able to find some. My neighbor who has been up in Illinois for the last six months just returned this week and she brought me some squash from her garden. This was very thoughtful of her. I received a letter from Healthy Kids saying who are plan provider was which I really knew already but it has a different number listed so hopefully Monday, but if not definitely Tuesday, I will be calling them to see if I can get answers if not I will call Health Kids and someone will give me accurate answers to my questions.
It seems that my to-do list doesn't get any shorter it only keeps getting longer but I will continue to plug away at the things that I need to attend to. I hope that the week ahead will provide the answers that I need at least for November and that I will know by the end of November before I have to pay the insurance premium again if Nicole is approved for SSI.
Tuesday, October 18, 2011
Doctor's Appointments
We have two doctor's appointments this week on Wednesday and Thursday. On Wednesday we see the gastroenterologist. Nicole started taking Omperoloze which is the generic for Prevacid in August I believe for her stomach pain after she ate. It really did help until about 10 days ago or so. The pain has come back but it is different. For the last two Sundays Nicole has thrown up after eating. The first Sunday I thought it was because of a combination of things not drinking enough liquids as she should have, didn't eat hardly anything, started her monthly cycle. She complained of dizziness all day. After she ate dinner she went and laid down for a few minutes which she does every night. For someone with a lung disease it takes a lot of energy to eat. The chewing of the food takes energy and the digestion of the food takes energy. I think what happened is she laid down flat on the bed and got really dizzy which caused her to throw up. This past Sunday she said she wasn't dizzy but again she laid flat and threw up. I had to call CVS Caremark on Monday as we get Tyvaso through them and told the clinician about it and she told me to not have her lie flat anymore. Last night she didn't lie flat. I will definitely bring this up at her appointment tomorrow.
On Thursday, we head on a day trip up to the University of Florida at Shand's Heart and Lung Transplant Center to see her pulmonary hypertension specialist. We have to be there at 10:00 a.m. for her to do a 6MW (minute walk) which is a test that is used to judge how medication is working etc. We have our appointment downstairs at the clinic at 11:00 a.m. which will include a echo at least. We are usually at the hospital for at least 3 hours. I absolutely dislike this appointment very much. The doctor can tell us that the disease has progressed or something has changed with her heart or that she had to change medications such as going on IV meds. I pray and pray that this isn't the case. I also pray that something has gotten better but it doesn't. I will be grateful for stable I have to be because I don't want the alternative. It is a very draining day and this lasts for a couple of days afterwards. I pray that this will go well.
A trip like this takes a lot of work to plan as I must take what seems like half of our house. We will leave about 7:00 a.m. which means I will wake Nicole at 5:30 a.m. to take her stomach pill which must be taken 30 minutes before she eats. At 6:00 a.m. I will make her breakfast and get her out of bed. I will have to make sure we have a large jug of water and a partially frozen bottle of Gatorade to take with us. Her Tyvaso will be mixed and capped and ready to go in a cooler to make sure it doesn't get too warm sitting in the car. I will also have some snacks as it will be a long time between breakfast at 6:00 a.m. and we are able to eat lunch after her appointment. I need to take her medicine, her oxygen concentrator, a pillow and blanket along with her hoodie, things to do for all of us while we wait, also need her transport chair so she doesn't have to walk from parking garage (usually can't find a spot in the handicap parking section) and through the hospital. I also need all the batteries, cannula's etc., for her medication and her O2 machine. I also have to take my big old fat medical binder which I am going to try to work on getting into Evernote. I would ultimately like to purchase an Ipad so I can get all her records onto that so I can take that to appointments instead of binder/laptop but that is not something my finances allow right now. I have to make sure we have our phones and everything is fully charged. I know there's other things that we need to take but I am not thinking of them.
This is another day in the life...
On Thursday, we head on a day trip up to the University of Florida at Shand's Heart and Lung Transplant Center to see her pulmonary hypertension specialist. We have to be there at 10:00 a.m. for her to do a 6MW (minute walk) which is a test that is used to judge how medication is working etc. We have our appointment downstairs at the clinic at 11:00 a.m. which will include a echo at least. We are usually at the hospital for at least 3 hours. I absolutely dislike this appointment very much. The doctor can tell us that the disease has progressed or something has changed with her heart or that she had to change medications such as going on IV meds. I pray and pray that this isn't the case. I also pray that something has gotten better but it doesn't. I will be grateful for stable I have to be because I don't want the alternative. It is a very draining day and this lasts for a couple of days afterwards. I pray that this will go well.
A trip like this takes a lot of work to plan as I must take what seems like half of our house. We will leave about 7:00 a.m. which means I will wake Nicole at 5:30 a.m. to take her stomach pill which must be taken 30 minutes before she eats. At 6:00 a.m. I will make her breakfast and get her out of bed. I will have to make sure we have a large jug of water and a partially frozen bottle of Gatorade to take with us. Her Tyvaso will be mixed and capped and ready to go in a cooler to make sure it doesn't get too warm sitting in the car. I will also have some snacks as it will be a long time between breakfast at 6:00 a.m. and we are able to eat lunch after her appointment. I need to take her medicine, her oxygen concentrator, a pillow and blanket along with her hoodie, things to do for all of us while we wait, also need her transport chair so she doesn't have to walk from parking garage (usually can't find a spot in the handicap parking section) and through the hospital. I also need all the batteries, cannula's etc., for her medication and her O2 machine. I also have to take my big old fat medical binder which I am going to try to work on getting into Evernote. I would ultimately like to purchase an Ipad so I can get all her records onto that so I can take that to appointments instead of binder/laptop but that is not something my finances allow right now. I have to make sure we have our phones and everything is fully charged. I know there's other things that we need to take but I am not thinking of them.
This is another day in the life...
Saturday, October 15, 2011
Pulmonary Rehabilitation
Thursday, Oct. 13th was Nicole's last pulmonary rehabilitation session. We have been going twice a week for the last four and a half weeks. She will have another 6 MW (minute walk) test and then our last educational class which is on stress management... something that I definitely could use.
On the first day of rehab she did a 6MW(minute walk) test in which she walked 710 ft. I am so hoping that she will improve this today. During her rehab visits she walks on the treadmill, does an arm bike, rides a stationary bike and than does a nu step machine. Her first day she was able to do 1 min. on the treadmill, 3 min. on the arm bike, 2 min. on the nu step and 2 min. on the stationary bike for a total of 7 mins. total exercise. I don't have a copy of the breakdown of each piece of equipment from Tuesday but I know she was up to 26 minutes of working out.
I am so proud of the progress she has made. I know that this has come at quite a cost to Nicole with the fatigue and just overall not feeling well due to the busyness with the rehab and all the doctor's appointment we have this month.
I am grateful for the rheumatologist who really pushed me to talk to her doctors about this and I'm grateful to the cardiologist for actually ordering it.
I am grateful for all the respiratory therapists and all the patients at rehab who were so kind and nice to Nicole. They usually don't see such young patients.
I pray that I will be able to stay committed to making Nicole exercise every day (or at least 5 days) even if she only rides the bike we have for 5 minutes or even if we walk up our street and back so she will not lose what she just worked so hard to achieve. Just like with other things I will have to be her motivation.
On the first day of rehab she did a 6MW(minute walk) test in which she walked 710 ft. I am so hoping that she will improve this today. During her rehab visits she walks on the treadmill, does an arm bike, rides a stationary bike and than does a nu step machine. Her first day she was able to do 1 min. on the treadmill, 3 min. on the arm bike, 2 min. on the nu step and 2 min. on the stationary bike for a total of 7 mins. total exercise. I don't have a copy of the breakdown of each piece of equipment from Tuesday but I know she was up to 26 minutes of working out.
I am so proud of the progress she has made. I know that this has come at quite a cost to Nicole with the fatigue and just overall not feeling well due to the busyness with the rehab and all the doctor's appointment we have this month.
I am grateful for the rheumatologist who really pushed me to talk to her doctors about this and I'm grateful to the cardiologist for actually ordering it.
I am grateful for all the respiratory therapists and all the patients at rehab who were so kind and nice to Nicole. They usually don't see such young patients.
I pray that I will be able to stay committed to making Nicole exercise every day (or at least 5 days) even if she only rides the bike we have for 5 minutes or even if we walk up our street and back so she will not lose what she just worked so hard to achieve. Just like with other things I will have to be her motivation.
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