I want to share our story of PH and how we came to this diagnose in hopes that other families can be diagnosed early enough for treatments to help them live a longer life. Looking back now, the signs were there and were overlooked due to another diagnoses. It is not uncommon for PH to be misdiagnosed especially in children because of all the other illnesses that mimic PH. I can tell you to be your childs advocate and if you feel in your gut like the diagnoses that was given isnt right, keep fighting, go to the next dr. Recently another one of our kids Julia who is ( 8 year old ) has been having some symptoms and the Drs want to rule out PH for her, so she will go tomorrow for EKG and chest Xrays. Keep us in your thoughts tomorrow and hoping for good results.
Here is our story of PH and how it all began.
Shaye was diagnosed with extreme anxiety in 2007, but during the 2 years that followed, her symptoms would continue to get worse, and her Dr would say it was due to her anxiety. Heart palpatations, dizziness, sweating, nausea, chest pains. What we would find out later is all of this was caused by something else, something we could never have prepared ourselves for.
Shaye's story begins on February 19th, 2010. She fell at school in PE and hurt her back. The nurse said she was fine and sent her back to class. She came home and we did heating pads, tylenol, etc and a week later it still wasnt feeling better. We decided to take her to the pediatrician. Her dad took her, and they sent them to the hospital next door for xrays thinking she hurt her back somehow. They told them it would be about 2 hours before the results would be back and the Dr would call us. A couple of hours passed and they called my husband and told him that she had fractured her spine, of course are you kidding me???? Was our reaction. They said she needed to be taken to the Texas Childrens hospitals ER. I left work and went by to get the xrays to take with me. Picked up Shaye, while my husband stayed home with the other 3 children. We left for the hospital which was about a 30 minute drive from Katy where we live.
We waited and waited to be seen, seemed like forever. We finally were taken to a room. The ER Dr first listened to her chest and asked, " she has a heart murmur"? I said no. He said, " she does now and it isnt a good one". He said he was going to go look at the xrays and would be back. When he returned about 45 minutes later, he had another Dr with him who he introduced as the cardiologist on call. Of course when I heard cardiologist, my heart sank. He asked if I wanted the good news, or the bad news first. I said the good news, I just wasnt ready to hear anything else. He said the good news is that her spine and back were perfectly fine. The bad news is something is wrong with her heart! My heart sank. The cardiologst took over, and told me that he was ordering an EKG because the xray also showed an enlargement of the ride side of her heart. She failed the EKG so he told me they were ordering an echo cardiograham. About 3:30 in the morning, they were doing the echo on her. It took a very long time it seemed, at least an hour and 1/2. He told us they were admitting her for more tests. We were taken to her room on the cardio floor about 5 am, and I thought we would be able to get some rest before more tests were done, but as soon as we were in there, the Cardio came in and told me they suspected Pulmonary Hypertension. We had no clue what that was, but our lives as we knew it was about to be changed forever! She had a heart cath about a week later which was the final Ph test. It showed her pressures in the high 90's and the Echo had only showed approx 50. Big difference.
The reason for her back pain when she fell the Dr said that her lungs were at their full capacity due to the high pressures so when she fell she felt pain. We have been told without medication she has about a year. With medication, they arent certain, it all depends on the medications and how they work. Her levels are severe, and all we can do is hope and pray the medications keep her levels low to slow down the progression.
Shaye started out with Tracleer and then Revatio was added along with Coumadin, Prevacid and an inhaler. In August she was having more symptoms of PH and so she went back in for another ECHO and we were told it had progressed severely and would need to be admitted to start the IV medication remodulin. She went into ICU and was in there approx 8 days. It was nothing nice and she had alot of reaction to the flolan and was sick alot. We made it through and her central line was placed and she came home on the remodulin with the cadd legacy pump. It has not been an easy ordeal. There have been so many emotions, anger and just overwhelming feelings dealing with the daily ups and downs with a child with PH. Shaye also has ADHD and can not be treated with medication for it so her body is fighting against the PH and the inability to do what she wants to do. She pushes herself to the limit and goes until she cant go anymore.
PH is a progressive terminal illness, so there is no cure, but hopefully we can slow the progression down. We have taken a step back and learned to look at life differently, because you just never know when your child, or someone you love can be taken from you. Life as we knew it has been changed forever. We have hope, we hope for a cure one day. All we can do is take it one day at a time and take the good with the bad in hopes for that better day to come along with a cure!
Monday, November 22, 2010
Thursday, November 19, 2009
Tammie S's PH Story
Before I begin my story I would like to tell you a little about myself. I’m a mom of 5 children, a military wife (family), support group leader, and PEER Mentor. I’m not an OU fan! I’m just married to one. I’ve been married for 12 years. I enjoy football and UFC along with most any sport. I love to read and write poetry. I also love to travel, visiting the zoo, and going camping. I was a nurse before we discovered I had PH. My first plane ride was on the Air Force’s C-130 Hercules on a spouse flight. The C-130 was the plane my husband worked on now he’s an engine mechanic for the KC-135. He has recently switched from Air Guard to the Air Reserves. We’ve also have our own mini zoo. We have 2 dogs, 2 hamsters, 2 tree frogs, a fish, and a lizard. Now that you know a little about me here’s where my story begins.
Many people have asked me how I got diagnosed with primary pulmonary hypertension. Instead of repeating myself numerous times I started writing my story.I need to tell you my family history of PH so you can understand my own story. So our history begins:I am not sure the exact dates or the exact years. I was in middle school/ jr. high when my family first heard of PH. Being the normal young teenager I didn't pay much attention and had a mind set that it wouldn't happen to me.
To begin the PH runs on my mom's side and from generation down. My grandparent’s had 7 children. Aunt Ray, Aunt Leona, my mom, Aunt Sheryl, Aunt Tina, Uncle Robert and Aunt Rhonda~ twins. 4 of the 7 have had or have PH. I’m the only one so far in my generation.
In 1992, my Aunt Rhonda was pregnant and started having problems with weight gain and breathing. In August of 1992 at 5-6 months pregnant she went into the Hospital. The doctor delivered the baby thinking the pregnancy was causing her problems. Within about 72 hours from going to the hospital her body started shutting down. An autopsy was performed and PH was found. She was 24 years old.
Between 1992 and 1994, my Uncle Robert, Rhonda's twin, was diagnosed with PPH. They had said that many twins will have the same illness/disease. I remember that he lost A LOT of weight and his lips were ALWAYS blue. I also know that my uncle didn't follow his doctor's directions. He didn't follow them because he felt that he had to work to provide for his family. He didn't have medical insurance and because of lack of state funding for PH. In August 1994 at 27 years old he passed due to the PPH while waiting for a heart transplant.Sometime between 1992 and 1995, my Aunt Leona was diagnosed with PPH. I remember she had to take A LOT of medicines. Half her dresser was covered in medicine bottles. She had good days and bad ones. I remember she had to get echos and right heart caths done many times. In November of 1995 she had a double lung transplant. The lungs were from a 13 year old girl from New Mexico. Back then we didn't have the technology we have today or the medicines we have today. The "new" lungs developed pneumonia, causing her to pass within the first few weeks after transplant.
My Aunt Tina has been living with PH for about 11 to 13 years. She is my inspiration story. When she was diagnosed with PH she spent 28 days in the hospital and left with a triple lumen used for Flolan, an IV heart medication, and oxygen. The doctors were very surprised as to they thought she wouldn't make it and sure not to leave the hospital. She had to list for a double lung transplant. Now years later she has had many central lines replaced, battled some hard battles, yet keeps on living. She is now OFF Flolan and uses only pills to control her PH. She has been off Flolan for just over a year (as of 2/2009) with no adverse side effects.
Now, knowing that PH runs in our family begins my own personal walk with PH. I have been tested, with echocardiograms; 2 times prior to finding I had PH. I was tested after my first 2 pregnancies. At each time PH was ruled out. I was tested because of not having good pregnancies. When I was on my third pregnancy I had a hard time with breathing and ultrasound proved it was how my son was laying on my lungs. My youngest son had to have oxygen for about 5 hours after birth. During labor we had a hard time getting him to come down and out the birth canal. A year after that and only being 24 years old I was on my fourth pregnancy. During my pregnancy I started noticing I was having problems with not being able to breath and hurting when I did. I couldn't do simple things like picking up my youngest child from his bed. I had blue lips. I lost my breath A LOT. After telling my OB/GYN at the next appointment, I was put on bed rest. The doctor looked into PH and was looking for answers to what might be causing my problems. Two weeks later I went back to the OB/GYN and he wanted me to get on EKG done and to read what my oxygen rate was at. I went in at the hospital to do the EKG, which was normal, but my oxygen level was in the 70's. They didn't let me leave the hospital and I was admitted. That was on Friday. Over the weekend I gained a pulmonary doctor and a cardio doctor. They decided that I couldn't make it to full term with my pregnancy. Monday Jan. 20, 2003, I delivered my twins 2 months early by c-section. Before delivery we tried to do a right heart cath. and didn't have enough time. I spent 2-3 weeks in the hospital during which I had MANY tests done. There were doctors called in from 3 different hospitals. Ruling out PH with an angiogram, we weren't sure what caused the low oxygen rate. I went home on oxygen. 5 months later I went off oxygen and went back to work doing CNA work. October 2004 I begin work at Mercy Hospital in Their Convent. I took care of the Sister's who are unable to care for themselves. I started not being able to breathe when doing simple things like vacuuming and walking. I had to sit and catch my breath. The patients I was used to lifting on my own I couldn't any more. I was tired and weak. During this time I started having abnormal female bleeding. I went into my OB/GYN, the same who delivered the twins. We tried to control the bleeding with 4 birth control pills per day. He said that a hysterectomy would be needed. During 1 month’s time I started having more problems with my breathing and it was that I had to rest more often and even taking a nap after work just to have energy to last thru the evening. My OB/GYN wouldn't do the hysterectomy before doing a pulmonary and a cardio work up. I went back to the same doctors who I saw before. I went to the pulmonary doctor and did a 6 minute walk, a chest x-ray, and a breathing test. The doctor said it was either asthma or pulmonary hypertension. I was treated for asthma while setting up another EKG. A month later I was diagnosed with PPH. I then went to a doctor who treats PH and is with a transplant center. I did a right heart cath and had to stay over night in the ICU. 1 month later I started Flolan. So from Feb. 2005, to May 2005, was the wait for diagnoses and treatment.
Working at the hospital I have benefits that if I used a doctor at the hospital I worked at then I wouldn’t have such high co-pay. I then went to search for a doctor who was knowledgeable and treated PH patients. I called those at the hospital who were on my insurance. I would ask questions like do you know what Pulmonary Hypertension is? How many PH patients do you have? How long have you treated PH? I didn’t find what I was looking for. The good thing is Oklahoma does have a PH doctor. I just have to pay higher co-pays. I noticed a lot of states don’t have PH doctors. My advice would be to call and do research and find a doctor you feel confront able with.
Around July 2005, I started having chest pain and found out that my gall bladder was enlarged and that I had 5 gall stones about the size of a half dollar. Now I needed my hysterectomy and my gall bladder removed. Yet I had to wait to where my dose of Flolan was stable and safe. In October, I went into the OB/GYN to get a pelvic ultrasound to find I had a 6.5mm zest on my right ovary. A normal zest every woman makes when cycling is about 2 to 3.5mm. I also wanted a mole removed that was showing signs of cancer. We found a doctor who was willing to work with my OB/GYN to do the gall bladder surgery. On Oct. 20, 2005, my 27th birthday, I went into have surgery. That was at 5 a.m. and later I was admitted to ICU because my blood pressure was not good. The next thing I knew is I having internal bleeding (the OB/GYN had said that a person with PH would 98-100% chance of not making it if internal bleeding happened) and was off to an emergency surgery. A surgery I wasn't expected to live through. I got into the OR and saw my mom's best friend's husband, a.k.a. Uncle Russ, who is a sub tech. I knew when I saw him that everything would be okay. I stayed 1 week in the hospital because my body wasn't producing platelets. I also have had swelling in my belly and have had to get it drained twice. The first time we took off about 2-2 1/2 liters. The second time we took off 3- 3 1/2 liters. That was just 6 weeks apart. After this time my PH became worse and I found out I was in need of a double lung transplant. While going thru the testing and listing process I was put on Revatio. Revatio was the medicine that could help with PH and help so well that I might not need a transplant. So far it has helped and I'm on inactive status for the transplant!!
Since then I have had a hole in my central line with was fixed and then later in the same spot another hole and it was replaced. When I had the first hole I was telling the line placement team I wanted the line replaced and not just fixed. The second hole happened less then 6 months. So because of this I encourage each and everyone who has medical concerns to always listen to your body!
April of 2008, I switched from Flolan to IV Remodulin. I switched because I believed that Remodulin would fit my lifestyle better. My lifestyle of being a mom to 5 children, ages from 14 to twins who are 6, and also a military family. What had made me think about the switch was when I had a lady come talk about the Remodulin pumps at a support group meeting. I got interested! I then asked my doctor, Accredo, my family, and did some brief research on the internet. I then had a PEER Mentor come speak at another support group meeting and was hooked! I did more research, talked more with my family and doctor. I finally just said I’m ready and can we get things set up for this time. Things worked out and I’ve been on Remodulin since.
I’ve battled a line infection and had another weeks stay in the hospital and a week at home with IV antibiotics. During the weeks stay I did have another central line replaced. This time I went from single lumens to a double. I’m now the support group leader for Oklahoma, have gone to the PH conference in Houston, have many websites I try to take care of and keep updated so I can reach out to those who need support. I’m also working with a lady to start a second support group in Oklahoma. Our support group has done a few fund raisers and we’re working on this year’s fund raiser. I also became a PEER Mentor myself and have begun sharing my story around the states! I’m also working on finding a way to donate my PH lungs to help PHers. I believe that with donating the PH lungs to researchers would give more hands on to help with medications and one day a cure!!!
I have a big support group outside my support group. I have family and friends that are great with supporting me. My in laws have also been a great support. I also have a RTA who more then just another support person, but a friend!
PH has affected my family for many years. As of my husband, children and in-laws, it affects us everyday. There are things we can't do. We have just learned to adjust and found other activities to do. The activities I still do are dance, belly dance, camp, lazy around in the pool, travel, and sing to name a few. When I do extra activities or travel I do rest up and take naps before and afterwards. I try to stay positive and take life one step at a time.
Here's more information.
• When I switched from Flolan to Remodulin I asked my doctor, Accredo, and my family and friends. I wanted all of those who support me and are involved in my care to agree for the switched. I did this many times before making the final decision to change treatment. When I switched from Revatio to Adcirca I just switched. I switched because my side effects, even with trying to control the side effects, were not letting me be compliant so when Adcirca came out I was like okay doc. I want to try that. He asked me if that doesn't work what else do we do. I told him we work TOGETHER and find a solution to make it work! He said ok.
• I'm working on doing research and coming up with a way to donate my PH lungs to do PH research. I just got some new information in Sept. and am coming very close. As for donating it would be either when I pass (which seems to be the only way at this time) or if/when I transplant.
• I have a support group outside my PH support group. My family including my in laws, my friends, my MySpace and face book friends, along with an RTA who is a great help and a wonderful friend.• There are still things I can't do like stairs, vacuuming, doing laundry(at times), swim, play sports, and other things like that. BUT there ARE things I still enjoy like getting in the pool/lake. I just relax on a floatie. Like I said I dance, sing, and I watch sports. I've even come up with a way mom can play hide & seek with her children. So basically I've adjusted what I can't do to make it something I CAN DO!
• My greatest advice for you is to make sure you ARE your own voice and that you SPEAK UP about your treatment and other things pertaining to your health. Ask questions no matter how small you think they are. The only dumb question is the one not asked! Listen and look for signs to known when to call your doctor. Remember YOU are the MAIN person who is PART of your health care TEAM! Doctors don't always communicate with each other so YOU might have to do the communication! Remember there is HOPE! You are NOT alone! Join a support group. These people know what it means to just have a bad day and you don't have to find words to explain, they just know & understand. (Which is the biggest thing my support group members talk about.)
• I have a quote it goes like this; "I have Ph it's not curable and it isn't going away. I won’t wake up one day and it be gone. PH does NOT control my life. I control my PH so I CAN LIVE LIFE!!!"
Many people have asked me how I got diagnosed with primary pulmonary hypertension. Instead of repeating myself numerous times I started writing my story.I need to tell you my family history of PH so you can understand my own story. So our history begins:I am not sure the exact dates or the exact years. I was in middle school/ jr. high when my family first heard of PH. Being the normal young teenager I didn't pay much attention and had a mind set that it wouldn't happen to me.
To begin the PH runs on my mom's side and from generation down. My grandparent’s had 7 children. Aunt Ray, Aunt Leona, my mom, Aunt Sheryl, Aunt Tina, Uncle Robert and Aunt Rhonda~ twins. 4 of the 7 have had or have PH. I’m the only one so far in my generation.
In 1992, my Aunt Rhonda was pregnant and started having problems with weight gain and breathing. In August of 1992 at 5-6 months pregnant she went into the Hospital. The doctor delivered the baby thinking the pregnancy was causing her problems. Within about 72 hours from going to the hospital her body started shutting down. An autopsy was performed and PH was found. She was 24 years old.
Between 1992 and 1994, my Uncle Robert, Rhonda's twin, was diagnosed with PPH. They had said that many twins will have the same illness/disease. I remember that he lost A LOT of weight and his lips were ALWAYS blue. I also know that my uncle didn't follow his doctor's directions. He didn't follow them because he felt that he had to work to provide for his family. He didn't have medical insurance and because of lack of state funding for PH. In August 1994 at 27 years old he passed due to the PPH while waiting for a heart transplant.Sometime between 1992 and 1995, my Aunt Leona was diagnosed with PPH. I remember she had to take A LOT of medicines. Half her dresser was covered in medicine bottles. She had good days and bad ones. I remember she had to get echos and right heart caths done many times. In November of 1995 she had a double lung transplant. The lungs were from a 13 year old girl from New Mexico. Back then we didn't have the technology we have today or the medicines we have today. The "new" lungs developed pneumonia, causing her to pass within the first few weeks after transplant.
My Aunt Tina has been living with PH for about 11 to 13 years. She is my inspiration story. When she was diagnosed with PH she spent 28 days in the hospital and left with a triple lumen used for Flolan, an IV heart medication, and oxygen. The doctors were very surprised as to they thought she wouldn't make it and sure not to leave the hospital. She had to list for a double lung transplant. Now years later she has had many central lines replaced, battled some hard battles, yet keeps on living. She is now OFF Flolan and uses only pills to control her PH. She has been off Flolan for just over a year (as of 2/2009) with no adverse side effects.
Now, knowing that PH runs in our family begins my own personal walk with PH. I have been tested, with echocardiograms; 2 times prior to finding I had PH. I was tested after my first 2 pregnancies. At each time PH was ruled out. I was tested because of not having good pregnancies. When I was on my third pregnancy I had a hard time with breathing and ultrasound proved it was how my son was laying on my lungs. My youngest son had to have oxygen for about 5 hours after birth. During labor we had a hard time getting him to come down and out the birth canal. A year after that and only being 24 years old I was on my fourth pregnancy. During my pregnancy I started noticing I was having problems with not being able to breath and hurting when I did. I couldn't do simple things like picking up my youngest child from his bed. I had blue lips. I lost my breath A LOT. After telling my OB/GYN at the next appointment, I was put on bed rest. The doctor looked into PH and was looking for answers to what might be causing my problems. Two weeks later I went back to the OB/GYN and he wanted me to get on EKG done and to read what my oxygen rate was at. I went in at the hospital to do the EKG, which was normal, but my oxygen level was in the 70's. They didn't let me leave the hospital and I was admitted. That was on Friday. Over the weekend I gained a pulmonary doctor and a cardio doctor. They decided that I couldn't make it to full term with my pregnancy. Monday Jan. 20, 2003, I delivered my twins 2 months early by c-section. Before delivery we tried to do a right heart cath. and didn't have enough time. I spent 2-3 weeks in the hospital during which I had MANY tests done. There were doctors called in from 3 different hospitals. Ruling out PH with an angiogram, we weren't sure what caused the low oxygen rate. I went home on oxygen. 5 months later I went off oxygen and went back to work doing CNA work. October 2004 I begin work at Mercy Hospital in Their Convent. I took care of the Sister's who are unable to care for themselves. I started not being able to breathe when doing simple things like vacuuming and walking. I had to sit and catch my breath. The patients I was used to lifting on my own I couldn't any more. I was tired and weak. During this time I started having abnormal female bleeding. I went into my OB/GYN, the same who delivered the twins. We tried to control the bleeding with 4 birth control pills per day. He said that a hysterectomy would be needed. During 1 month’s time I started having more problems with my breathing and it was that I had to rest more often and even taking a nap after work just to have energy to last thru the evening. My OB/GYN wouldn't do the hysterectomy before doing a pulmonary and a cardio work up. I went back to the same doctors who I saw before. I went to the pulmonary doctor and did a 6 minute walk, a chest x-ray, and a breathing test. The doctor said it was either asthma or pulmonary hypertension. I was treated for asthma while setting up another EKG. A month later I was diagnosed with PPH. I then went to a doctor who treats PH and is with a transplant center. I did a right heart cath and had to stay over night in the ICU. 1 month later I started Flolan. So from Feb. 2005, to May 2005, was the wait for diagnoses and treatment.
Working at the hospital I have benefits that if I used a doctor at the hospital I worked at then I wouldn’t have such high co-pay. I then went to search for a doctor who was knowledgeable and treated PH patients. I called those at the hospital who were on my insurance. I would ask questions like do you know what Pulmonary Hypertension is? How many PH patients do you have? How long have you treated PH? I didn’t find what I was looking for. The good thing is Oklahoma does have a PH doctor. I just have to pay higher co-pays. I noticed a lot of states don’t have PH doctors. My advice would be to call and do research and find a doctor you feel confront able with.
Around July 2005, I started having chest pain and found out that my gall bladder was enlarged and that I had 5 gall stones about the size of a half dollar. Now I needed my hysterectomy and my gall bladder removed. Yet I had to wait to where my dose of Flolan was stable and safe. In October, I went into the OB/GYN to get a pelvic ultrasound to find I had a 6.5mm zest on my right ovary. A normal zest every woman makes when cycling is about 2 to 3.5mm. I also wanted a mole removed that was showing signs of cancer. We found a doctor who was willing to work with my OB/GYN to do the gall bladder surgery. On Oct. 20, 2005, my 27th birthday, I went into have surgery. That was at 5 a.m. and later I was admitted to ICU because my blood pressure was not good. The next thing I knew is I having internal bleeding (the OB/GYN had said that a person with PH would 98-100% chance of not making it if internal bleeding happened) and was off to an emergency surgery. A surgery I wasn't expected to live through. I got into the OR and saw my mom's best friend's husband, a.k.a. Uncle Russ, who is a sub tech. I knew when I saw him that everything would be okay. I stayed 1 week in the hospital because my body wasn't producing platelets. I also have had swelling in my belly and have had to get it drained twice. The first time we took off about 2-2 1/2 liters. The second time we took off 3- 3 1/2 liters. That was just 6 weeks apart. After this time my PH became worse and I found out I was in need of a double lung transplant. While going thru the testing and listing process I was put on Revatio. Revatio was the medicine that could help with PH and help so well that I might not need a transplant. So far it has helped and I'm on inactive status for the transplant!!
Since then I have had a hole in my central line with was fixed and then later in the same spot another hole and it was replaced. When I had the first hole I was telling the line placement team I wanted the line replaced and not just fixed. The second hole happened less then 6 months. So because of this I encourage each and everyone who has medical concerns to always listen to your body!
April of 2008, I switched from Flolan to IV Remodulin. I switched because I believed that Remodulin would fit my lifestyle better. My lifestyle of being a mom to 5 children, ages from 14 to twins who are 6, and also a military family. What had made me think about the switch was when I had a lady come talk about the Remodulin pumps at a support group meeting. I got interested! I then asked my doctor, Accredo, my family, and did some brief research on the internet. I then had a PEER Mentor come speak at another support group meeting and was hooked! I did more research, talked more with my family and doctor. I finally just said I’m ready and can we get things set up for this time. Things worked out and I’ve been on Remodulin since.
I’ve battled a line infection and had another weeks stay in the hospital and a week at home with IV antibiotics. During the weeks stay I did have another central line replaced. This time I went from single lumens to a double. I’m now the support group leader for Oklahoma, have gone to the PH conference in Houston, have many websites I try to take care of and keep updated so I can reach out to those who need support. I’m also working with a lady to start a second support group in Oklahoma. Our support group has done a few fund raisers and we’re working on this year’s fund raiser. I also became a PEER Mentor myself and have begun sharing my story around the states! I’m also working on finding a way to donate my PH lungs to help PHers. I believe that with donating the PH lungs to researchers would give more hands on to help with medications and one day a cure!!!
I have a big support group outside my support group. I have family and friends that are great with supporting me. My in laws have also been a great support. I also have a RTA who more then just another support person, but a friend!
PH has affected my family for many years. As of my husband, children and in-laws, it affects us everyday. There are things we can't do. We have just learned to adjust and found other activities to do. The activities I still do are dance, belly dance, camp, lazy around in the pool, travel, and sing to name a few. When I do extra activities or travel I do rest up and take naps before and afterwards. I try to stay positive and take life one step at a time.
Here's more information.
• When I switched from Flolan to Remodulin I asked my doctor, Accredo, and my family and friends. I wanted all of those who support me and are involved in my care to agree for the switched. I did this many times before making the final decision to change treatment. When I switched from Revatio to Adcirca I just switched. I switched because my side effects, even with trying to control the side effects, were not letting me be compliant so when Adcirca came out I was like okay doc. I want to try that. He asked me if that doesn't work what else do we do. I told him we work TOGETHER and find a solution to make it work! He said ok.
• I'm working on doing research and coming up with a way to donate my PH lungs to do PH research. I just got some new information in Sept. and am coming very close. As for donating it would be either when I pass (which seems to be the only way at this time) or if/when I transplant.
• I have a support group outside my PH support group. My family including my in laws, my friends, my MySpace and face book friends, along with an RTA who is a great help and a wonderful friend.• There are still things I can't do like stairs, vacuuming, doing laundry(at times), swim, play sports, and other things like that. BUT there ARE things I still enjoy like getting in the pool/lake. I just relax on a floatie. Like I said I dance, sing, and I watch sports. I've even come up with a way mom can play hide & seek with her children. So basically I've adjusted what I can't do to make it something I CAN DO!
• My greatest advice for you is to make sure you ARE your own voice and that you SPEAK UP about your treatment and other things pertaining to your health. Ask questions no matter how small you think they are. The only dumb question is the one not asked! Listen and look for signs to known when to call your doctor. Remember YOU are the MAIN person who is PART of your health care TEAM! Doctors don't always communicate with each other so YOU might have to do the communication! Remember there is HOPE! You are NOT alone! Join a support group. These people know what it means to just have a bad day and you don't have to find words to explain, they just know & understand. (Which is the biggest thing my support group members talk about.)
• I have a quote it goes like this; "I have Ph it's not curable and it isn't going away. I won’t wake up one day and it be gone. PH does NOT control my life. I control my PH so I CAN LIVE LIFE!!!"
Thursday, November 5, 2009
Diana's PH Story
I am Diana, 54 years old with PH secondary to interstitial lung damage secondary to scleroderma. I was diagnosed with the scleroderma about 3 years ago but had some CREST symptoms as long ago as 12 years with my esophagus now it is full blown and progressing rapidly. I was diagnosed with PH 1 year ago this month. it has progressed to class 4 and I am on Flolan along with Revatio and lots of diuretics, digoxin and pain meds for the scleroderma. I take 14 pills in the morning..... a few more about 2:00 and then 10 at dinner time. It is very hard to type this with my painful crooked fingers but I fell it is important to share my story with others so they can be encouraged.
I love Jesus and was a church secretary for 15 years at our church. I retired Dec. 08 and went on SSD. That is something I should have done months before I did but I just didn't want to "give in".
I do not drive any more and can only walk around in the house with my o2 on 5 l/m so I cannot walk to the car or from the car to a store or anything like that. I have a wheel chair and a jazzy power chair and someone goes with me everywhere I go outside the house. MY husband is a truck driver and owns his own truck and gets his own loads and is gone quite a bit so Ii am at home on my own in the afternoons.... I have caretakers in the mornings for Flolan stuff and giving me a shower which I cannot do on my own any more. This all has brought my h usband and I closer together than we have ever been. The Lord has been by my side holding me up through all my down times and good times as well.
I am so thankful for everyone who has encouraged me and filled me with helpful info on the PH web site
I love Jesus and was a church secretary for 15 years at our church. I retired Dec. 08 and went on SSD. That is something I should have done months before I did but I just didn't want to "give in".
I do not drive any more and can only walk around in the house with my o2 on 5 l/m so I cannot walk to the car or from the car to a store or anything like that. I have a wheel chair and a jazzy power chair and someone goes with me everywhere I go outside the house. MY husband is a truck driver and owns his own truck and gets his own loads and is gone quite a bit so Ii am at home on my own in the afternoons.... I have caretakers in the mornings for Flolan stuff and giving me a shower which I cannot do on my own any more. This all has brought my h usband and I closer together than we have ever been. The Lord has been by my side holding me up through all my down times and good times as well.
I am so thankful for everyone who has encouraged me and filled me with helpful info on the PH web site
Tuesday, December 2, 2008
G. C.'s Story
This is my first time blogging, so please bear with me. Back in 1993, I had a beautiful baby girl, and was working full-time as an operating room nurse, and taking "call" (that means that if an emergency surgery is needed after usual hours, they "call" you to come in to help do it). The amount of hours that I would weekly log would be as if I had both a full-time and a part-time job.
Then came the opportunity to loose the last of the pregnancy weight gain that I hadn't lost so far. That came in the name of Fen-Phen. My family M.D. prescribed it, and little by little, I was loosing the weight that I wanted to. But in exchange for this weight I noticed the start of swollen ("edematous") lower legs & ankles, and at times, disturbingly shortness of breath. Having access to a cardiac (heart) monitor (I also worked in the Recovery Room), one day I hooked myself up to it, and ran off a strip that printed out a long line of what my heart beat looked like. What I saw, I didn't like, and so I brought it over to an anesthesiologist not helping with surgery at that time.He strongly suggested that I go to the Emergency Room.
After being scoffed at by the Cardiologist in the E.R. (Back then I was a 43 year old female. I'm older now, and still female, and still scoffed at); he had quite a different expression when the labwork came back indicating that I was in the process of having a "small" (non q-wave) heart attack. This was a very small community hospital, and I was shipped to a much more evolved hospital.There I had the first of my angiograms (to date, I've lost count, but I know this is true-- the number of catherizations that I have had now number over 40)... and when I mention that to any of the neccessary people involved, even to this day, they claim I've set a new record of sorts... Whoopee. (I was hoping for a dozen roses on my 12th, but that never happened. How disappointing!)
Now my days are spent nearly totally inactive; I'm on Letairus (which seems to help), but have leg swelling that even amazes me at times, a variety of wheezing sounds that range anywhere from a herd of demented ducks to a hacking cough that wakes me up at night with a range of sounds that are quite interesting to say the least. Any type of physical activity makes me breathless, and my heart race.
Up until my last echo (a week ago) the numbers showed that I had pulmonary hypertension. But now the big dilema, (despite having taken the Fen-Phen) is which came first-- the left or the right-sided heart failure because of my previous heart attacks (I have had a total of 4, with 5 blocked stents). And those pulmonary numbers vary, which I find very confusing.
It seems that because of additional diagnoses, (abnormal cardiac arteries-- one of which is called a "myocardial bridge",& has it's own unique problem-- which doesn't respond to traditional coronary artery disease treatment, and all of the other arteries are fine), pulmonary hypertension, multiple sclerosis, and newly diagnosed hypothyroidism (which wasn't there when I first started seeing the Pulmonlogist).
I'd love to know of anyone (doctor or patient) that has some insight into what it's like to be in my spot-- having newby interns trying to tell me one day it's my heart giving me trouble, the next day then telling me that I don't have any heart problems (despite coronary bypass and many interventions), and then the best answer that makes me see red-- that i"m "just anxious".
I often have to explain what "Myocardial Bridge" means, as well as what a certain procedure I have had called "T.M.R." (Transmyocardial Revascularization). I am the one in the bed as a patient, not the one wearing the white coat and stethoscope around my neck!!! I want answers and I want to feel like somebody knows what's going on, and can come up with a plan for me!!! I feel like I'm back-tracking...not making any real progress, only more confused... help please?
Thanks.
Then came the opportunity to loose the last of the pregnancy weight gain that I hadn't lost so far. That came in the name of Fen-Phen. My family M.D. prescribed it, and little by little, I was loosing the weight that I wanted to. But in exchange for this weight I noticed the start of swollen ("edematous") lower legs & ankles, and at times, disturbingly shortness of breath. Having access to a cardiac (heart) monitor (I also worked in the Recovery Room), one day I hooked myself up to it, and ran off a strip that printed out a long line of what my heart beat looked like. What I saw, I didn't like, and so I brought it over to an anesthesiologist not helping with surgery at that time.He strongly suggested that I go to the Emergency Room.
After being scoffed at by the Cardiologist in the E.R. (Back then I was a 43 year old female. I'm older now, and still female, and still scoffed at); he had quite a different expression when the labwork came back indicating that I was in the process of having a "small" (non q-wave) heart attack. This was a very small community hospital, and I was shipped to a much more evolved hospital.There I had the first of my angiograms (to date, I've lost count, but I know this is true-- the number of catherizations that I have had now number over 40)... and when I mention that to any of the neccessary people involved, even to this day, they claim I've set a new record of sorts... Whoopee. (I was hoping for a dozen roses on my 12th, but that never happened. How disappointing!)
Now my days are spent nearly totally inactive; I'm on Letairus (which seems to help), but have leg swelling that even amazes me at times, a variety of wheezing sounds that range anywhere from a herd of demented ducks to a hacking cough that wakes me up at night with a range of sounds that are quite interesting to say the least. Any type of physical activity makes me breathless, and my heart race.
Up until my last echo (a week ago) the numbers showed that I had pulmonary hypertension. But now the big dilema, (despite having taken the Fen-Phen) is which came first-- the left or the right-sided heart failure because of my previous heart attacks (I have had a total of 4, with 5 blocked stents). And those pulmonary numbers vary, which I find very confusing.
It seems that because of additional diagnoses, (abnormal cardiac arteries-- one of which is called a "myocardial bridge",& has it's own unique problem-- which doesn't respond to traditional coronary artery disease treatment, and all of the other arteries are fine), pulmonary hypertension, multiple sclerosis, and newly diagnosed hypothyroidism (which wasn't there when I first started seeing the Pulmonlogist).
I'd love to know of anyone (doctor or patient) that has some insight into what it's like to be in my spot-- having newby interns trying to tell me one day it's my heart giving me trouble, the next day then telling me that I don't have any heart problems (despite coronary bypass and many interventions), and then the best answer that makes me see red-- that i"m "just anxious".
I often have to explain what "Myocardial Bridge" means, as well as what a certain procedure I have had called "T.M.R." (Transmyocardial Revascularization). I am the one in the bed as a patient, not the one wearing the white coat and stethoscope around my neck!!! I want answers and I want to feel like somebody knows what's going on, and can come up with a plan for me!!! I feel like I'm back-tracking...not making any real progress, only more confused... help please?
Thanks.
Monday, November 24, 2008
Phyllis' Story
My health problems all started sometime in 1995. The first thing I noticed was that my index finger on my right hand kept turning white from the last joint to the tip. I went to my Primary Care Physician, and he did some blood work. He said I had Lupus and wanted to put me on Prednisone. I said I wanted a second opinion. I went to a Rheumatologist, and he said I didn’t have Lupus but a Positive ANA and Raynaudes. He said that I probably had an unidentifiable Connective Tissue disease, but that right now he didn’t have enough pieces of the puzzle to diagnose it. He said to go home and forget about it. I had a Doppler of my arm because they couldn’t get a pulse on my right ulnar artery. The doctor said there was no blood flow from mid-arm to the middle of my hand. So, I had an arteriogram of my arm. It revealed that the right ulnar artery was missing mid-arm to middle of hand, but it was OK up the other side. They didn’t know what happened to it, but they didn’t think it was a birth defect. They said it had atrophied, been attacked by my own body or was in a deep spasm and wouldn’t let the blood pass through. The next thing that happened was I developed Irritable Bowel Syndrome, followed by loss of speech in both ears. I had to have a Hysterectomy, and then later my Gallbladder removed. I also started having swallowing problems which was diagnosed as GERD or acid reflux. In 2001, I had pneumonia, and after it was supposedly gone, I continued to have chills, low grade fever and strange food cravings. I went to a Rheumatologist, and he said that my immune system was turned on and couldn’t turn off. He gave me a dose pack of Prednisone, and the symptoms went away. He said at that time that I had Undifferentiated Mixed Connective Tissue Disease and Fibromyalgia. I also had dry eyes. In October of 2006, I started having shortness of breath. I had been troubled with shortness of breath on exertion for a few years before, but my recovery was quick and I thought I was just out of shape. This time, my recovery wasn’t so quick, and I became worse and worse. My chest felt heavy like it was weighted down. My back hurt between my shoulder blades. I was very tired. I went to my Primary Care Physician. He did a lot of tests, and put me on Thyroid medication for low thyroid, but I didn’t get better. My legs were swollen and hurt a lot. I was getting weaker and weaker. I went to a Cardiologist, and she said she couldn’t find anything wrong. I had several tests there, including a Nuclear Stress test. I could hear my heart beating in my ears. I thought something was very wrong. I was sent to a Pulmonologist. I told him my medical history and asked if he thought I could have PAH. I had been doing research on the Internet, and that seemed to be a fit as far as everything I knew to be true of my symptoms. He said it was a likely possibility. He suggested I see a PAH specialist at Vanderbilt University Medical Center in Nashville, Tennessee by the name of Dr. Ivan Robbins. I went to see a Rheumatologist instead. He did a lung scan, and he said I am calling your Pulmonary doctor. You need to get to Vanderbilt ASAP. I think you are in danger and have PH. I was put on a list to see Dr. Robbins on March 13 of 2007. On February 9th, I woke up about 1:17 a.m. (one week to the day prior to this, I had passed out) and told my husband I needed to go to the ER as I thought I was having a heart attack. I told him if I waited until March 13th, I would be dead. He called an ambulance. I went to the local hospital ER. They admitted me, and started me on Lasix. They called my Cardiologist, who in November couldn’t find anything wrong with me except for a slight heart murmur. She was shocked at my current condition. My Pulmonary doctor came as well. He called Vanderbilt, and Vanderbilt said I could come straight to their hospital as soon as they had a bed. I was taken by ambulance the next evening. Once I arrived, they assigned me to a team of doctors. Dr. Robbins also came to see me. They did a lot of tests including a V-Q Lung Scan, Echocardiogram and Right heart catheterization which showed PAH. I was diagnosed as a high stage III. I went home after five days on Revatio, Lasix, Potassium, Warfarin, and Ventavis was ordered for me. Although, Dr. Robbins thought I needed Flolan. While I was in the hospital, they pulled 26 pounds of fluid off my body. No wonder, I hurt everywhere. After a month on Ventavis, I agreed that I was backsliding and needed Flolan. So on April 1, 2007, I went on Flolan. I have progressed so much since then that now I am a candidate for either Inhaled Remodulin when it comes out of trials or Letaris and Revatio combination therapy. Time will tell. Thanks to Vanderbilt, I am alive and showing signs of progress. As far as my Connective Tissue Disease goes, they think I may have a form of Scleroderma or a form of CREST, but they still aren’t certain.
Wednesday, November 19, 2008
Tera's Story
Hello, My name is Tera, I am the oldest of three siblings. I entered into this journey of life at the age of 33. I am a wife, mother and a medically retired paraprofessional and coach.
After leading an active, vibrant lifestyle, I suddenly found myself immobilized! As I try to think back to where this all began, it’s like trying to put a puzzle together. I remember the basketball season of 2004 getting short of breath while trying to run plays on the court. I had to stop running with them and just give directions. I went to the doctor , but he said it was bronchitis. I took the medication and it cleared up for a while. It was even harder for me to keep up with the kids in our classroom. I had to use the elevator to ge to the office, cafeteria and library. The stairs was taking everything out of me, turning my hands purple, and leaving me gasping for air.
It was on a cold day in January of 2005, I woke up feeling short of breath but I insisted on going to the grocery store with my cousin Stacey. While in the store, she kept asking me if I was okay. I told her yes because I didn’t want to upset her because she was expecting at the time. I went to my Mother’s house when I got home, Tiffany and Natasha was making pecan candy, they took one look at me and Natasha says something is wrong with you, your lips are purple. I then walked to my house stopping several times to catch my breath. I made it inside and my husband looks at me and says , to me , go sit down and I’ll put the groceries up. I went to the bathroom to look in the mirror but by this time I am completely out of breath , my lips hands and feet are purple. I can’t yell for Tarais so I call Averil from my cell phone to come and take me to the hospital. When she arrives at my house, she looked at me and said are you crazy, you will not die on me in my van. Tarais dialed 911, it took all but three minutes for someone to respond to the call. Gerilyn was an EMT on call that day, when she heard the address she responded to the call without waiting for the ambulance. I’m glad she did, she saved my life. When the ambulance arrived , all I remember hearing is we’ve got to roll we are losing her fast. Unfortunately the doctor in the emergency room said it was a severe asthma attack and that I could go home after several hours of taking breathing treatments.
Another month has passed and there is no change. I live in the lab having blood drawn, I’m having to call in sick on a regular basis and I’m missing most of our softball games because my hand can’t take the cold and I am in constant pain. I make another doctor’s appointment ,making sure that he understands that something else is going on other than asthma and bronchitis. By this time, I have to make an appointment with the dermatologist also because now I have ulcerated blisters on two of my finger tips..
It’s now March and my fingers aren’t healing. The dermatologist performs a biopsy on my fingers, he’s puzzled by the results of the test, he continues to treat me for my fingers but he insisted that I see my doctor because something serious is going wrong with my health. By this time I feel as if I’m on a roller coaster ride that just won’t stop rolling. I go back to the doctor again , this time he makes appointments for me to see a pulmonary specialist and a rheumatologist.
I’m in the office of the rheumatologist with thoughts running through my mind, if I can’t breathe than why am I seeing a doctor for arthritis . After my exam, I feel like I have been questioned by a lawyer and still have no answers. He sends me to lab of course and then to do a CAT Scan of my lungs.
It’s now May and my steps are getting shorter and harder to make and my lungs feel as though they are always going into spasms. I get a call from the rheumatologist to come in for a visit the next day. My Grandmother and I sit patiently in the waiting area, I’m thinking to myself I can’t believe arthritis can cause all of this. The nurse calls my name and takes us to the room, the doctor walks in and says Tera, I have bad news for you, you have a Lung Disease called Scleroderma. He goes on to say it’s uncurable but there is a treatment that can possible slower the deterioration of your lungs, he went on to say that he was sending me to a cardiologist because he was afraid that it maybe something wrong with my heart also. As part of a treatment plan he put in a request for me to take chemotherapy for my lungs. I looked at my Grandmother and I thought to myself, oh my God ! I’m going to die!
I’m driving home and I’m thinking of how will I tell my parents , my sister and my brother along with my husband and the rest of my family and friends that I have a life threatening illness that has no cure. My Grandmother sees the fear in my face and the tears falling from my eyes as she’s whispering a Prayer to God. She said to me , you know how to Pray and I taught ya’ll to depend on God for everything and right now is no time to Doubt Him.
It’s the end of July and I’m at my second visit with the cardiologist, he says that he need to send me for a test ASAP! The test was scheduled for August 3, 2005 , I walked in not knowing what to expect. My Mother (calm as she think she maybe ,until it’s all over then she breaks down) tells me to stop being nervous it’s just a simple test. Well let me tell you, that test landed me in a hospital room with tubes in my neck going to my heart. I had lay flat on my back and could not move for the next 24 hours. When I looked into my Mothers eyes, I could see that she had been crying. Later on I see my Grandmother and Averil walk through the door then my Tee Cheryl and Stacey(of all people, she cries when I cry), not long after they arrive my Godparents show up with this look on their face as if they know something that I don’t know. The next morning my doctor comes into the room and says my love, you have a very rare heart disease called Pulmonary Hypertension which has no cure. I’m thinking two life threatening illnesses with no cure, way to go Tera.
I’m two years into my marriage , just purchased a new home now how do I go home and lay all of this on my family. I felt like someone just ripped me open and had taken every ounce of joy from me and my family. I was empty , lost and in dismay. Never did I think that nothing could happen to me, I’m just used of taking care of everyone else, now someone will be helping me to get through the rough times.
The storm before the storm came on August 23, 2005, it’s my first day of chemo, my Mother and Grandmother was there to support me. I signed in and waited anxiously for the nurse to call me. When my name was called, I walked through the door and I started to tremble and the tears rolled down my face, just as I started to calm down, I heard a call for Code Blue. It was for a patient on the other side of the room. A team of doctors rushed in as if we were in a Trauma Unit. I thought to myself, if this is what chemo does to you , this is my first and last treatment. They put me in a room another patient since I was nervous. She said to me, baby cry if you want to because this is your life, but it’s not as bad as it seems, it gets easier every time you walk through that door.
Three days later we are packing up our home in Boothville, LA , headed for Amite, LA in the wait for Hurricane Katrina to make landfall , praying that she wouldn’t destroy our hometown. On August 29, 2005, our lives would change forever . I woke up to a power outage and I’m on oxygen and have no back up tanks. I had just started using oxygen, so I didn’t know who to contact. Every one in my family is worried about me, so I told them I was fine. As the days passed by , I could feel my breathing getting worse but I didn’t say anything. Finally , I got in touch with the oxygen company and they had an office open ten minutes from where we were. Thank God we got in touch with them we were out of power for three weeks . Some nights Averil had to drive me around town just so that I could cool off in her van with the A.C. running wide open freezing her. I felt sorry for her but my lungs surely appreciated the air.
Now I’m really feeling empty and lost I’m faced with health issues and the lost of my home and vehicle. I go to my rheumatologist for my checkup and he tells me that things are still looking the same and there is no change in my health. Well he lays another one on me, he advised me not to move back home for at least seven years because of the bacteria, it wouldn’t be healthy for my lungs. Now we are faced with having to make Amite, LA, our new home. I know that life takes us in many different directions and we must find the courage and hold on to Faith in God to move on, but at what point do I start to move forward. I continued to take chemo until January 2006.
On April 11, 2006 which was my 34th birthday, I went to visit my lung specialist. As he walked through the door, I didn’t see that smile on his face that he usually greeted me with. I asked him where was that smile that used to greet me with? He said Baby Girl we need to have a serious talk, so I said okay I’m listening. In the middle of our conversation he asked me to go home and get my business in order . I asked him what did that mean, he looked at my Mother and said to her, I’m giving your daughter 4 to 6 moths to live, those are my thoughts from looking at all of her test results, then he turned to me and said I’m only speaking from a doctors point of view I am not God, He has the last say. I took a deep breath to hold back the tears. On the drive home, I was very quiet ,my Mom on the other hand as calm as she seems, I could hear the fear in her voice as she talked with my brother on the phone. She looked at me and said it’s okay just live your life to the fullest, live each day as if it was your last day, enjoy your life. Every one took the news hard as expected. My brother came to visit one evening and I could tell that he had been crying before he came inside, he asked me, Tut how can you walk around with a smile on your face knowing that you might die, my answer was I had made Peace with God and whatever His decision was it had to be. But the truth of it was , I was living to die, I would wake up each morning wonder at what hour of the day I might die. I didn’t tell a soul because I wanted to feel brave, I felt that if I could hold my composure that I could keep every one else together.
On October 31, 2006, six months later I was rushed to doctor’s office because I wasn’t feeling well and my breathing was shallow. I was thinking to myself, Lord I know I’ve had six moths to prepare for this day but just wait, don’t take me yet please, I’m not ready. Dr. Ventura looked in my eyes and told my husband to turn the wheelchair around and head for the emergency room. They started working on me right away. My Mother showed up and my husband was torn apart, I don’t think they were much good for each other. By this time I knew that she was having a hard time excepting the fact that I was sick. Later on that evening, who shows up at the hospital but Stacey. Little did I know that she had called in sick and stayed home because she had felt that something was going wrong. I was of no help to her because I really thought I was going to die, it felt good having her at my side although all she could do was cry, I couldn’t talk to her so I just held her hand and we cried together. I found myself on a thirteen day stay in the Critical Care Unit at Ochsner Hospital .
The doctors were puzzled by what was going on because they couldn’t get a diagnosis from the blood test. They started sending blood work to doctors at universities in many different states. Non of the antibiotics were working and the oxygen was breathing 100% for me. Dr. Ventura came in and told my Mother that he was doing all that he could do but he was losing me. I had a deadly pneumonia and my body was not responding to the medications. I started praying Lord if you can DELIVER Daniel from the Lion’s Den, then Lord I know that you can HEAL me. Five days later Dr. Ventura comes into my room and says this must be a miracle from God because I had made a 360 degree turn with my breathing, they were able to turn down the setting of the oxygen.
I am currently taking a medication named Ventavis for my PH and it is working well, it has put me back on my feet. I Thank God everyday for my family and friends. God is my ROCK but they are my stand. They stand to give me encouragement every time I see that little smile on their faces when I do things for myself with some limitations but I count it all JOY! My Son is my sunshine, of course he is your average teenager, but I can get pass that. He’s always there when I need him, come rain or shine he’ s carrying oxygen tanks to the car, in the house, to the store and to Church. He’s even there to help with household chores, sometimes he complain but find me teenager that will not complain. My Mother and Grandmother to me is like a rose, their tears are like the petals once they’ve fallen and withered up the bush stands firm until it’s time to bloom another set of petals. My Father is quiet, but I can see the pain his heart endures every time I look him in the eyes. My husband won’t talk with me about how he feels, but he shares his emotions with other people when I am not around, sometimes I wish he would just say something. My sister is also quiet and won’t say much to me about it, but on the other hand, she still thinks that I should always do for her and think about me later, of course it’s why I love her, she’s my baby sister and I have her Spoiled. The kids in the neighborhood race to me when they see me outside, running just for a hug and a simple how are you feeling? Do you need help today?
God has blessed me to be able to attend a PHA Conference in Houston Texas in June of 2008. I was enlightened to have learned all of the information I did about living life with PH. It has changed my life completely, now I am inspired to raise awareness to other people about this Disease. I hope that in my endeavor to have a fundraiser for PH that I may change someone’s life forever. The support that I receive from everyone
Gives me a reason to FIGHT FOR A CURE!
In all that I go through, I know that God Will never put more on me than I can bear. Even when my clouds hang low I won’t complain because there is always somebody going through more than me. So I say to all Pher’s , family and friends when it seems as if it’s never going to end just STAND and let God see you through!
After leading an active, vibrant lifestyle, I suddenly found myself immobilized! As I try to think back to where this all began, it’s like trying to put a puzzle together. I remember the basketball season of 2004 getting short of breath while trying to run plays on the court. I had to stop running with them and just give directions. I went to the doctor , but he said it was bronchitis. I took the medication and it cleared up for a while. It was even harder for me to keep up with the kids in our classroom. I had to use the elevator to ge to the office, cafeteria and library. The stairs was taking everything out of me, turning my hands purple, and leaving me gasping for air.
It was on a cold day in January of 2005, I woke up feeling short of breath but I insisted on going to the grocery store with my cousin Stacey. While in the store, she kept asking me if I was okay. I told her yes because I didn’t want to upset her because she was expecting at the time. I went to my Mother’s house when I got home, Tiffany and Natasha was making pecan candy, they took one look at me and Natasha says something is wrong with you, your lips are purple. I then walked to my house stopping several times to catch my breath. I made it inside and my husband looks at me and says , to me , go sit down and I’ll put the groceries up. I went to the bathroom to look in the mirror but by this time I am completely out of breath , my lips hands and feet are purple. I can’t yell for Tarais so I call Averil from my cell phone to come and take me to the hospital. When she arrives at my house, she looked at me and said are you crazy, you will not die on me in my van. Tarais dialed 911, it took all but three minutes for someone to respond to the call. Gerilyn was an EMT on call that day, when she heard the address she responded to the call without waiting for the ambulance. I’m glad she did, she saved my life. When the ambulance arrived , all I remember hearing is we’ve got to roll we are losing her fast. Unfortunately the doctor in the emergency room said it was a severe asthma attack and that I could go home after several hours of taking breathing treatments.
Another month has passed and there is no change. I live in the lab having blood drawn, I’m having to call in sick on a regular basis and I’m missing most of our softball games because my hand can’t take the cold and I am in constant pain. I make another doctor’s appointment ,making sure that he understands that something else is going on other than asthma and bronchitis. By this time, I have to make an appointment with the dermatologist also because now I have ulcerated blisters on two of my finger tips..
It’s now March and my fingers aren’t healing. The dermatologist performs a biopsy on my fingers, he’s puzzled by the results of the test, he continues to treat me for my fingers but he insisted that I see my doctor because something serious is going wrong with my health. By this time I feel as if I’m on a roller coaster ride that just won’t stop rolling. I go back to the doctor again , this time he makes appointments for me to see a pulmonary specialist and a rheumatologist.
I’m in the office of the rheumatologist with thoughts running through my mind, if I can’t breathe than why am I seeing a doctor for arthritis . After my exam, I feel like I have been questioned by a lawyer and still have no answers. He sends me to lab of course and then to do a CAT Scan of my lungs.
It’s now May and my steps are getting shorter and harder to make and my lungs feel as though they are always going into spasms. I get a call from the rheumatologist to come in for a visit the next day. My Grandmother and I sit patiently in the waiting area, I’m thinking to myself I can’t believe arthritis can cause all of this. The nurse calls my name and takes us to the room, the doctor walks in and says Tera, I have bad news for you, you have a Lung Disease called Scleroderma. He goes on to say it’s uncurable but there is a treatment that can possible slower the deterioration of your lungs, he went on to say that he was sending me to a cardiologist because he was afraid that it maybe something wrong with my heart also. As part of a treatment plan he put in a request for me to take chemotherapy for my lungs. I looked at my Grandmother and I thought to myself, oh my God ! I’m going to die!
I’m driving home and I’m thinking of how will I tell my parents , my sister and my brother along with my husband and the rest of my family and friends that I have a life threatening illness that has no cure. My Grandmother sees the fear in my face and the tears falling from my eyes as she’s whispering a Prayer to God. She said to me , you know how to Pray and I taught ya’ll to depend on God for everything and right now is no time to Doubt Him.
It’s the end of July and I’m at my second visit with the cardiologist, he says that he need to send me for a test ASAP! The test was scheduled for August 3, 2005 , I walked in not knowing what to expect. My Mother (calm as she think she maybe ,until it’s all over then she breaks down) tells me to stop being nervous it’s just a simple test. Well let me tell you, that test landed me in a hospital room with tubes in my neck going to my heart. I had lay flat on my back and could not move for the next 24 hours. When I looked into my Mothers eyes, I could see that she had been crying. Later on I see my Grandmother and Averil walk through the door then my Tee Cheryl and Stacey(of all people, she cries when I cry), not long after they arrive my Godparents show up with this look on their face as if they know something that I don’t know. The next morning my doctor comes into the room and says my love, you have a very rare heart disease called Pulmonary Hypertension which has no cure. I’m thinking two life threatening illnesses with no cure, way to go Tera.
I’m two years into my marriage , just purchased a new home now how do I go home and lay all of this on my family. I felt like someone just ripped me open and had taken every ounce of joy from me and my family. I was empty , lost and in dismay. Never did I think that nothing could happen to me, I’m just used of taking care of everyone else, now someone will be helping me to get through the rough times.
The storm before the storm came on August 23, 2005, it’s my first day of chemo, my Mother and Grandmother was there to support me. I signed in and waited anxiously for the nurse to call me. When my name was called, I walked through the door and I started to tremble and the tears rolled down my face, just as I started to calm down, I heard a call for Code Blue. It was for a patient on the other side of the room. A team of doctors rushed in as if we were in a Trauma Unit. I thought to myself, if this is what chemo does to you , this is my first and last treatment. They put me in a room another patient since I was nervous. She said to me, baby cry if you want to because this is your life, but it’s not as bad as it seems, it gets easier every time you walk through that door.
Three days later we are packing up our home in Boothville, LA , headed for Amite, LA in the wait for Hurricane Katrina to make landfall , praying that she wouldn’t destroy our hometown. On August 29, 2005, our lives would change forever . I woke up to a power outage and I’m on oxygen and have no back up tanks. I had just started using oxygen, so I didn’t know who to contact. Every one in my family is worried about me, so I told them I was fine. As the days passed by , I could feel my breathing getting worse but I didn’t say anything. Finally , I got in touch with the oxygen company and they had an office open ten minutes from where we were. Thank God we got in touch with them we were out of power for three weeks . Some nights Averil had to drive me around town just so that I could cool off in her van with the A.C. running wide open freezing her. I felt sorry for her but my lungs surely appreciated the air.
Now I’m really feeling empty and lost I’m faced with health issues and the lost of my home and vehicle. I go to my rheumatologist for my checkup and he tells me that things are still looking the same and there is no change in my health. Well he lays another one on me, he advised me not to move back home for at least seven years because of the bacteria, it wouldn’t be healthy for my lungs. Now we are faced with having to make Amite, LA, our new home. I know that life takes us in many different directions and we must find the courage and hold on to Faith in God to move on, but at what point do I start to move forward. I continued to take chemo until January 2006.
On April 11, 2006 which was my 34th birthday, I went to visit my lung specialist. As he walked through the door, I didn’t see that smile on his face that he usually greeted me with. I asked him where was that smile that used to greet me with? He said Baby Girl we need to have a serious talk, so I said okay I’m listening. In the middle of our conversation he asked me to go home and get my business in order . I asked him what did that mean, he looked at my Mother and said to her, I’m giving your daughter 4 to 6 moths to live, those are my thoughts from looking at all of her test results, then he turned to me and said I’m only speaking from a doctors point of view I am not God, He has the last say. I took a deep breath to hold back the tears. On the drive home, I was very quiet ,my Mom on the other hand as calm as she seems, I could hear the fear in her voice as she talked with my brother on the phone. She looked at me and said it’s okay just live your life to the fullest, live each day as if it was your last day, enjoy your life. Every one took the news hard as expected. My brother came to visit one evening and I could tell that he had been crying before he came inside, he asked me, Tut how can you walk around with a smile on your face knowing that you might die, my answer was I had made Peace with God and whatever His decision was it had to be. But the truth of it was , I was living to die, I would wake up each morning wonder at what hour of the day I might die. I didn’t tell a soul because I wanted to feel brave, I felt that if I could hold my composure that I could keep every one else together.
On October 31, 2006, six months later I was rushed to doctor’s office because I wasn’t feeling well and my breathing was shallow. I was thinking to myself, Lord I know I’ve had six moths to prepare for this day but just wait, don’t take me yet please, I’m not ready. Dr. Ventura looked in my eyes and told my husband to turn the wheelchair around and head for the emergency room. They started working on me right away. My Mother showed up and my husband was torn apart, I don’t think they were much good for each other. By this time I knew that she was having a hard time excepting the fact that I was sick. Later on that evening, who shows up at the hospital but Stacey. Little did I know that she had called in sick and stayed home because she had felt that something was going wrong. I was of no help to her because I really thought I was going to die, it felt good having her at my side although all she could do was cry, I couldn’t talk to her so I just held her hand and we cried together. I found myself on a thirteen day stay in the Critical Care Unit at Ochsner Hospital .
The doctors were puzzled by what was going on because they couldn’t get a diagnosis from the blood test. They started sending blood work to doctors at universities in many different states. Non of the antibiotics were working and the oxygen was breathing 100% for me. Dr. Ventura came in and told my Mother that he was doing all that he could do but he was losing me. I had a deadly pneumonia and my body was not responding to the medications. I started praying Lord if you can DELIVER Daniel from the Lion’s Den, then Lord I know that you can HEAL me. Five days later Dr. Ventura comes into my room and says this must be a miracle from God because I had made a 360 degree turn with my breathing, they were able to turn down the setting of the oxygen.
I am currently taking a medication named Ventavis for my PH and it is working well, it has put me back on my feet. I Thank God everyday for my family and friends. God is my ROCK but they are my stand. They stand to give me encouragement every time I see that little smile on their faces when I do things for myself with some limitations but I count it all JOY! My Son is my sunshine, of course he is your average teenager, but I can get pass that. He’s always there when I need him, come rain or shine he’ s carrying oxygen tanks to the car, in the house, to the store and to Church. He’s even there to help with household chores, sometimes he complain but find me teenager that will not complain. My Mother and Grandmother to me is like a rose, their tears are like the petals once they’ve fallen and withered up the bush stands firm until it’s time to bloom another set of petals. My Father is quiet, but I can see the pain his heart endures every time I look him in the eyes. My husband won’t talk with me about how he feels, but he shares his emotions with other people when I am not around, sometimes I wish he would just say something. My sister is also quiet and won’t say much to me about it, but on the other hand, she still thinks that I should always do for her and think about me later, of course it’s why I love her, she’s my baby sister and I have her Spoiled. The kids in the neighborhood race to me when they see me outside, running just for a hug and a simple how are you feeling? Do you need help today?
God has blessed me to be able to attend a PHA Conference in Houston Texas in June of 2008. I was enlightened to have learned all of the information I did about living life with PH. It has changed my life completely, now I am inspired to raise awareness to other people about this Disease. I hope that in my endeavor to have a fundraiser for PH that I may change someone’s life forever. The support that I receive from everyone
Gives me a reason to FIGHT FOR A CURE!
In all that I go through, I know that God Will never put more on me than I can bear. Even when my clouds hang low I won’t complain because there is always somebody going through more than me. So I say to all Pher’s , family and friends when it seems as if it’s never going to end just STAND and let God see you through!
Tuesday, November 18, 2008
Marilyn's Story
Today is PH Blog Day so here I go. I was diagnosed in 1997 with Pulmonary Hypertension, a rare, incurable disease that cause s high blood pressure in the pulmonary artery between the heart and lungs and can lead to heart failure. I've been on several therapies including IV infusion 24/7 for six years ; now I am on an experimental drug, some pills that I take twice a day. I have come a long way and I feel better now than before I got sick. Twent y years ago, the only treat ment was a heart - lung transplant . Thank God for modern medicine and possibly a cure in the future using stem cells from the patients own bone marrow. Everybody enjoy the holidays. Peace Out.
Your Phriend,
Marilyn
Woodland, California
Your Phriend,
Marilyn
Woodland, California
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