So it was a very long day in Jacksonville today but all the testing is done. I had everything done to determine if my PH is primary or secondary. First was the blood draw - 13 tubes in all!! Then I went for all the pulmonary stuff. I had PFT's - which I hated. I had to do an exercise test where I stepped up and down on a set of stairs. After 1 minute and 41 seconds I had to stop because my heart was pounding and I was starting to get short of breath. I was scared I would pass out but after resting for a minute I felt fine. Then they drew an ABG - the girl was good. It hurt less than the lab draw! Then I had my six minute walk where I walked around the halls for six minutes! Every minute they recorded how far I went, my oxygen level and my heart rate. Everything was stable. I then went to cardiology for my echo, chest xray and EKG. Last but not least I had the VQ scan to determine whether or not there are any blood clots in my lungs. That was probably the worst test only because for the first part I had to hold a mask over my face and breathe in and out - I felt like I was being suffocated - it was awful. The rest was a piece of cake - just lay on the table while the camera takes pictures.
After everything was done I waited to see the doctor. He seemed much more friendly this time (probably because he was ready to start a 3 day weekend!) He said everything so far looked fine so he pretty much determined I have primary PH. All along I knew this was going to be the outcome. I am ok with it and ready to fight :) Next Wednesday I have my cath scheduled. During the cath they will give me meds to see what will help bring down the pressures. I am hoping and praying I will be on oral medications and not IV. I guess I should be happy to be on whatever works but continuous IV is just another hurdle I don't want to have to leap. I guess I will cross that bridge when I get there.
Eric and I stopped for dinner on our way home. There was a cute 5 month old baby sitting near us and it made me a little sad. I still haven't completely come to terms that I can never get pregnant again. I basically try not to think about it. When we got home Ashleigh was so happy to see us and that made me feel sooo much better. We were all playing upstairs and she was cracking up laughing - probably the biggest and cutest belly laughs I have ever heard :) It made me realize how very lucky I am and how much I have to fight for!
I want to say thank you to everyone for all their positive thoughts and prayers. It helps more than I can say. This has been tough to deal with but is made a little easier knowing we have so many people who love and care about us and will do anything to help. I have to especially thank my mom - I definitely would not be able to get through this without her. She has been here since I had the first cath. Since I can't pick up or carry Ashleigh she does it all for me. And thanks to my Dad for letting her stay here - it can't be easy :) I can't wait for Dad and Katie to come down in a couple weeks!
Friday, May 28, 2010
Sunday, May 23, 2010
How it all started
So I figured the easiest way to keep everyone up to date on what's going on with my situation was to start a blog. Plus I thought it will be helpful to me to get everything off my chest.
About six months ago I noticed I was feeling short of breath walking up the stairs in our house. I just figured I needed to start exercising more - I must be out of shape. On February 12th I passed out for the first time in almost four years. A couple weeks later I passed out again. I chalked both up to the neurocardiogenic syncope I was diagnosed with four years ago when the passing out started. At the beginning of March I decided to go see my cardiologist because the shortness of breath was still happening and I thought he should know I started passing out again. He basically thought I was out of shape but since I am young, don't smoke, am not overweight, blah blah blah he would do a thorough workup. At the end of the month I was scheduled for an echo and stress test. During the stress test I passed out. I walked for less than four minutes. I completely freaked out everyone in the office. They said they have seen very few people pass out during a stress test and none as young as me. Even Dr J was nervous which scared us. At this point I think he knew something else was going on. He ordered a stat CT of my coronary arteries which was done two days later. For that test I had to take two different meds which both lowered my blood pressure. While walking out to the waiting room I passed out again. This time I think it was just because my BP was so low. I ended up going to the ER, got some fluids and was sent home. I went back to see Dr J and he decided he wanted to send my to see a cardiac specialist at the Mayo Clinic in Jacksonville. My appointment was scheduled for May 21st. He did breifly mention pulmonary hypertension but didn't make it seem like a big deal so we didn't really think too much about it. Oh and the cardiac CT was fine.
In mid May we started getting copies of all my records from Dr J's office to bring to the Mayo. In his dictation of the echo and the office visit he stated I have mild pulmonary hypertension and my pressures were elevated on the echo. We started freaking out because we had been researching PH on the internet and it's all pretty grim to say the least. We decided we wanted to have a cardiac cath done because that is the only way to definitevly diagnose PH. I had the cath done on May 12th and sure enough my pulmonary pressures were high and I was officially diagnosed. The next day I had a TEE done to determine if I had a hole in my heart that could be causing the PH. I never thought I would hope and pray to have a hole in my heart! Unfortunately it was negative (if there had been one it was possible to be repaired and the PH could have been resolved).
On May 21st I had my appointment with Dr Burger at the Mayo. He is a leading specialist in treating PH. Eric had been freaking out the week before the appointment and I was pretty calm. I didn't think it was going to be so bad. Unfortunately I was wrong. My pressures were worse on the cath than I had thought. My PA pressure was 90/40 (normal is 25/10) and the right side of my heart is enlarged. He told us we need to be aggressive in treating this. I said whatever we need to do let's do it as soon as possible. First thing is to determine if it is primary or secondary. Primary just happens with no cause (only occurs in 5-6 per 1 million people!) Secondary is caused by something else (connective tissue disorders like rheumatoid arthritis, sarcoidosis, lupus, or a pulmonary embolism or other lung conditions). So this week - Wed, Thurs and Fri I have a bunch of tests scheduled to determine if something is causing all this. Next week I will be scheduled for another cath. During that cath they will give me meds to see what will work to bring the pressures down. Eric asked what the life expectancy is because everything we read online is very discouraging - 2-3 years for primary PH. He wouldn't give us any specifics but said if we can get the pressures down towards normal and not cause any more damage to the right side of my heart I will live. I have found a great website PHassociation.org that is very encouraging. There is no cure for this but there are different meds to treat it. Ten to fifteen years ago there were only 1-2 meds to choose from and now there are 8-9 with more in clinical trials. Hopefully someday there will be a cure. There are many people living normal, productive lives with their PH being controlled on meds. I will be one of those people :) I do admit that I am very scared and don't think this is fair. I keep hoping I will wake up from a bad dream but I know that isn't going to happen. I have to stay positive because I have a whole lot to fight for - especially my beautiful baby girl who is probably a miracle. My pressures were elevated four years ago on the first echo I had done. Because PH is so rare it was never mentioned but had I learned back then that I have PH I never would have had Ashleigh. Everything happens for a reason. Once diagnosed with PH pregnancy is out of the question because there is a huge risk of death. So my dreams of having a big family have been put on hold. For now I am going to treasure what I have. I will write soon once I know what the next steps are going to be.
About six months ago I noticed I was feeling short of breath walking up the stairs in our house. I just figured I needed to start exercising more - I must be out of shape. On February 12th I passed out for the first time in almost four years. A couple weeks later I passed out again. I chalked both up to the neurocardiogenic syncope I was diagnosed with four years ago when the passing out started. At the beginning of March I decided to go see my cardiologist because the shortness of breath was still happening and I thought he should know I started passing out again. He basically thought I was out of shape but since I am young, don't smoke, am not overweight, blah blah blah he would do a thorough workup. At the end of the month I was scheduled for an echo and stress test. During the stress test I passed out. I walked for less than four minutes. I completely freaked out everyone in the office. They said they have seen very few people pass out during a stress test and none as young as me. Even Dr J was nervous which scared us. At this point I think he knew something else was going on. He ordered a stat CT of my coronary arteries which was done two days later. For that test I had to take two different meds which both lowered my blood pressure. While walking out to the waiting room I passed out again. This time I think it was just because my BP was so low. I ended up going to the ER, got some fluids and was sent home. I went back to see Dr J and he decided he wanted to send my to see a cardiac specialist at the Mayo Clinic in Jacksonville. My appointment was scheduled for May 21st. He did breifly mention pulmonary hypertension but didn't make it seem like a big deal so we didn't really think too much about it. Oh and the cardiac CT was fine.
In mid May we started getting copies of all my records from Dr J's office to bring to the Mayo. In his dictation of the echo and the office visit he stated I have mild pulmonary hypertension and my pressures were elevated on the echo. We started freaking out because we had been researching PH on the internet and it's all pretty grim to say the least. We decided we wanted to have a cardiac cath done because that is the only way to definitevly diagnose PH. I had the cath done on May 12th and sure enough my pulmonary pressures were high and I was officially diagnosed. The next day I had a TEE done to determine if I had a hole in my heart that could be causing the PH. I never thought I would hope and pray to have a hole in my heart! Unfortunately it was negative (if there had been one it was possible to be repaired and the PH could have been resolved).
On May 21st I had my appointment with Dr Burger at the Mayo. He is a leading specialist in treating PH. Eric had been freaking out the week before the appointment and I was pretty calm. I didn't think it was going to be so bad. Unfortunately I was wrong. My pressures were worse on the cath than I had thought. My PA pressure was 90/40 (normal is 25/10) and the right side of my heart is enlarged. He told us we need to be aggressive in treating this. I said whatever we need to do let's do it as soon as possible. First thing is to determine if it is primary or secondary. Primary just happens with no cause (only occurs in 5-6 per 1 million people!) Secondary is caused by something else (connective tissue disorders like rheumatoid arthritis, sarcoidosis, lupus, or a pulmonary embolism or other lung conditions). So this week - Wed, Thurs and Fri I have a bunch of tests scheduled to determine if something is causing all this. Next week I will be scheduled for another cath. During that cath they will give me meds to see what will work to bring the pressures down. Eric asked what the life expectancy is because everything we read online is very discouraging - 2-3 years for primary PH. He wouldn't give us any specifics but said if we can get the pressures down towards normal and not cause any more damage to the right side of my heart I will live. I have found a great website PHassociation.org that is very encouraging. There is no cure for this but there are different meds to treat it. Ten to fifteen years ago there were only 1-2 meds to choose from and now there are 8-9 with more in clinical trials. Hopefully someday there will be a cure. There are many people living normal, productive lives with their PH being controlled on meds. I will be one of those people :) I do admit that I am very scared and don't think this is fair. I keep hoping I will wake up from a bad dream but I know that isn't going to happen. I have to stay positive because I have a whole lot to fight for - especially my beautiful baby girl who is probably a miracle. My pressures were elevated four years ago on the first echo I had done. Because PH is so rare it was never mentioned but had I learned back then that I have PH I never would have had Ashleigh. Everything happens for a reason. Once diagnosed with PH pregnancy is out of the question because there is a huge risk of death. So my dreams of having a big family have been put on hold. For now I am going to treasure what I have. I will write soon once I know what the next steps are going to be.
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