some ramblings

I've written a lot of facts the last couple posts, so I think it's time for some rambling.

I am feeling pretty good about my whole heart situation now. I feel like I am finally being taken care of. As soon as I met Dr. Ahktar on Oct. 31, I had a feeling that he would take care of me. He was very friendly, but truthful. I felt like I could trust him. 

And I was right. 

He really got things moving and the fact that he contacted the pediatric cardiologists personally, that same day, and called me personally...that meant a lot to me. He could have easily let it filter through the office to his secretary, and it would have taken a lot longer to get moving.

A big thank you to Dr. Ahktar!!!

After I met with Dr. Ahktar that morning, I decided that I no longer wanted to be a patient of Dr. Stein. A Dr. can't "steal" another Dr.'s patient, but a patient can decide to switch doctors. So, I called Dr. Ahktar's office to ask how I could go about switching over to him. His secretary said that Dr. Ahktar had given her my file, and that he wanted to take me on as his patient, and that he was possibly going to dictate a letter to Dr. Stein to do this. Wow! I found out later that Dr. Ahktar isn't accepting new patients right now, so Wow! again!

It's not that I didn't like Dr. Stein. He is a very nice, gentle, caring man. But to not have done anything further to look into all of this, after all these years... However, when I met with Dr. Ahktar, he said that he had read my echo years ago. And I know other cardiologists did to. So, what happened? Did other cardiologists offer their opinions to Dr. Stein, and since I was his patient, it was ultimately up to him what was done, and he did nothing?? Or did all the doctors that saw my echos decide that it wasn't worth looking into? And if that's the case...why is it such a big deal now?? Sigh...I don't know if I will ever know all that happened.

But what I do know is that I am being very well cared for now...and I am so thankful!!

Even though the thought of surgery is scary, I would way rather face it now when I'm young and healthy, rather than wait and face it if something ever goes wrong. So, everything is good. I'm prepared to deal with whatever decision the surgeons come to. I will still be nervous for sure, but I know it will be the best thing for me. Then I will be done with all this once and for all. 

Over the years, in the back of my mind, I have wondered on and off about my heart. What was going on...is it really nothing to worry about...and I going to keel over from a heart attack one day? Dr. Kakadekar told me that I was very lucky to never had any problems, lucky that there was no damage at all to my heart. Especially being active and going through 2 pregnancies with no problems! I think of all I have done in my life, especially during pregnancy (bike riding, major day hikes)...and I feel very blessed to be fine. My guardian angel must be working overtime protecting me!!

Well, I think that's enough ramblings for now...

the angiogram

I arrived bright and early at 7:00am on Dec.7 for my angiogram. I was prepped and ready to go, with a valium in my belly at around 8:00. The valium was good to have, and calmed my nerves. I was wheeled in to the angiogram room and noticed about a dozen people! Wow. They froze me and started the procedure.

Even though I was frozen, all through the procedure, my leg ached where they were working and fishing wires up to my heart. The doctors were happy with the pictures they were getting, and everything was going well. There were 4 cardiologists in the room, one doing the procedure, and 3 observing. I was in good hands...lots of good hands! At one point, they took a break to discuss what they were seeing. They discovered that what they thought was going on in my heart, wasn't actually what was going on. That's why an angiogram is so good. It leaves no question as to what's going on. Very detailed.

It turns out that both of the vessels coming off of the aorta, feeding my heart with blood, are in the right spot and fine. The problem is that I have an extra vessel, attached to one of the vessels that is feeding my heart with blood. This vessel empties into the pulmonary artery (the artery that goes to the lungs). So, the vessel is stealing some of the blood intended for my heart and pumping it to my lungs. 

Overall, the problem is much simpler than they thought. It is still possible that they will do surgery to fix it, but the surgery would be less complex. Instead of moving a vessel, they would be tying off an extra one. However, there is another way that may work. It is experimental, so I don't know if they will go for it. They would go in through the groin, like the angiogram, and place a plug in the extra vessel, sealing it off. The decision of what to do will be made by the team of surgeons in Edmonton. There is also a group of cardiologists from all over western Canada that meet by video conference, once a week, to discuss rare or complex cases. They will be meeting about my case and offering opinions and discussing options.

They closed my PDA during the angiogram, so one problem down, one to go! 

They were finished everything around 10:30. They need to put a lot of pressure on the artery after the procedure to stop the bleeding. This is very important, since it's a main artery, and if you bleed, it can quickly lead to trouble. They stopped the bleeding and sent me up to my room around 10:45. Just as they were wheeling me out of the elevator, I started to bleed. They rushed me in and put more pressure on. It was all fine, but it's amazing how quickly I bled!

To make sure that your artery clots and starts healing properly after an angiogram, you have to lay flat on your back and still for 4 hours. They said I could go at 4:00. What a long day! At about 3:45, they got me up to walk around a bit and see how I was feeling. I walked a bit and started feeling light headed, so sat down, then laid down. The feeling subsided, but a few minutes later as I was still laying down, it got worse. I told the nurse. She checked my leg and said I was swelling (which means internally bleeding from the artery). I was feeling worse by the second at this point. The nurse started yelling for people, and I remember a lot of people running and working on me. They started an IV and took a blood sample to check my hemoglobin level. As soon as they started pumping me with fluid I started feeling better. Phew!

Since I bled again, they kept me in another few hours to make sure I was ok. I got up about 6:45 and felt much better. We arrived home at 7:00 with instructions for me to lay flat all night...just in time to watch Sara open her birthday gifts!

I took it easy the next few days, and now am feeling pretty good. A little sore and stiff, and I have one huge nasty bruise...but other than that not bad. I am not allowed to lift anything over 10lb. for 7 days, which is interesting...Jacob is definitely over 10lbs.! Derrick's Mom and my parents were here through the weekend, which was a huge help! My parents left on on the 11th, so now during the day I'm on my own. I'm managing pretty well...figures that at the same time all of this happened, Jacob came down with bronchitis...blast! So, he's a little more needy right now.

I don't expect to hear anything before Christmas about the surgical team's decision. I will let everyone know any news as soon as I hear.

Thanks for all your prayers!!

how it all came about

It all started with a trip to Canadian Blood Services, sometime in 2000. Derrick had recently started working there, and encouraged me to come down and donate. I mustered up my courage and headed down. In the screening process, it came up that I had a heart murmur. I was asked what kind it was. I had no idea...only knew that I had been told since I was a child that I had one. No problems, no meds, just a murmur. I was not allowed to donate until I found out what kind it was. So, off to the dr. I went.

My dr. referred me to a cardiologist, Dr. Stein, to look into it. I met with him and had an echocardiogram done (an ultrasound of the heart). It was discovered that I had PDA (patent ductus arteriosus), which is a heart defect. When you are born, there is a tube that connects the aorta and the pulmonary artery, so that blood bypasses your lungs, which aren't functioning yet. This tube is supposed to close within a few days after birth. Mine didn't. Find out more at www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html

Since this had never caused me any problems, Dr. Stein wanted to follow up with annual echos to monitor the PDA, but assured me I was fine and never had to worry about it.

At my annual echo in 2002, the tech doing the echo noticed something strange and went to alert the resident to check out what she found. In the mean time, I'm laying on the bed trembling, imagining what on earth could be wrong. The resident said that there was some problem...that I may even need a valve replacement someday...what??!! I thought I was fine and had a harmless murmur!! I met with Dr. Stein after the echo, and he assured me that everything was fine, that the tech had seen something she hadn't before, that technology was getting better all the time, so something new showed up on screen she wasn't used to seeing. I was told to continue as usual and not worry. I went on to have my annual echos in 2003 and 2004.

Sometime after the echo in 2004, I was in to see my family dr. She said that she received a letter from Dr. Stein saying that he and a colleague had discussed my echo and decided that I should have an angiogram. An angiogram is a test where dye is injected into the heart, and photos taken. It is a super detailed test that can clearly show what is going on in the heart. I was shocked, since I was always told there was no need for further investigation. So, I carried on as usual, waiting to be contacted with a date for the angiogram. I didn't hear anything. 

Time slipped by, and one day late in 2005 I got a call from Dr. Stein's office. The secretary was updating files and was wondering what my status was. I was thinking...shouldn't you be the one telling ME what my status is??? Hmmm... Anyway, I told her that I was on the list for an angiogram, but I was pregnant at the time, so didn't know when I could come in for it. She said not to worry, I wouldn't get in until my baby (Jacob) was about a year and a half.

Again, time slipped by without me hearing anything about a date for an angiogram, or even a date for my annual echo. It was May 2007 and Jacob was almost a year old. A friend of ours, Jeff Booker, is studying to be a cardiologist. So, naturally, he is interested in hearing the latest about my heart saga. He was able to look into my previous echos and chat with me about what may be going on in my heart. I told him that Derrick and I are wanting to have another baby, and he encouraged me to have an angiogram before getting pregnant. Then everyone would know, once and for all, what's going on. So, I called Dr. Stein's office to see where I was on the angiogram list...hoping to get bumped up so I could get it done and over with and we could continue on and try to have a baby. Dr. Stein's office didn't have access to "the list", and referred me to the cardiac cath lab. (where the test would be done). I spoke with someone from the cath lab and was told I had been taken off "the list" in May 2006. What??!! Argh! I was told to make an appointment with Dr. Stein, and if he wanted me back on "the list", I would get be put back on.

I saw Dr. Stein in the summer of 2007. Again, he downplayed everything, said I was fine, didn't need an angiogram or a transesophogeal echocardiogram (an ultrasound of the heart done from inside, by putting a tube down the throat) and to go ahead and get pregnant. They would do a few extra echos during the pregnancy to make sure everything was going well. He joked and said, "I hope Jeff didn't scare you too much!" He said he would arrange for me to have a routine echo within a month, since I hadn't had one since 2004. As for the reason I was taken off "the list"? I was told to not worry about the list...some people are on the list that shouldn't be, and some people aren't on the list that should be...and the the list has gone through some changes and restructuring. Huh??!! So, needless to say, I was a little uneasy about the way everything was always smoothed over and downplayed. That's fine if that's the truth...but after all this time, I wanted to get to the bottom of this once and for all!

I was contacted by the cath lab in early fall 2007, wanted to update my file and figure out what's going on. Again... shouldn't they be telling ME what's going on, not me telling them?? Anyway, I told them that I had seen Dr. Stein in the summer, and that he said an angiogram wasn't needed. The person on the phone said, "Oh. Ok, I will go ahead and take you off the list then." What??!! I thought I was off the list in May 2006?? Argh!! What is going on???

At the end of October 2007, out of the blue, I was contacted by Dr. Ahktar's office (Dr. Ahktar is a different cardiologist who specializes in echos). They said that I was referred to him by Dr. Stein to have a transesophogeal echo. Ok...I thought I didn't need one! And still, I hadn't been booked for the routine echo! They had a cancellation on Oct. 31, so I was booked to come in.

I arrived at the hospital on Oct. 31 and was prepped for the procedure. Dr. Ahktar came in and reviewed my file. After doing this, and chatting with me, he looked at the nurse and said, "Why is she having this done? She doesn't need this, she needs an angiogram." I thought...you are kidding me...are you serious?? He said that he remembers seeing my echo years before. It is common that cardiologists with view and discuss different cases with each other, for other opinions, insights, etc. He said that doing the test would be very cool and provide great pictures, but wouldn't give them the answers they need. Only an angiogram would do that. Since I hadn't had an echo since 2004, he said that he would get me in for one that morning. While I was getting the echo, he would try and get a hold of the pediatric cardiologists to let them know about me and my situation. I needed to see a pediatric cardiologist because the problems I have are congenital, which means I've had them since birth. My head was swimming with questions. I wanted answers, and was tired of being bounced around for so many years. I told Dr. Ahktar that I needed to trust him that he would take care of this and do what he could to get to the bottom of this, once and for all! He assured me he would. 

Dr. Ahktar explained that along with the PDA, I have a vessel that's not connecting in the right place. When the blood returns from the lungs oxygenated it is ready to be pumped out to the body through the aorta. Off of the aorta there are 2 vessels that feed the heart muscle with blood. One vessel is fine. The other is connecting from the pulmonary artery (deoxygenated blood) instead of the aorta. So, this vessel would possibly need to be moved to the right place. If they decide this needs to be done, it would have to be surgically. Wow. He told me not to get pregnant before this is all figured out. A pregnancy puts stress on your heart, and he didn't want to chance it. Yes, I have had 2 very successful pregnancies, but it is a risk. So, no baby for now. Dr. Ahktar wasn't able to get in touch with the pediatric cardiologist before I left the hospital that day, but he personally called me that afternoon to let me know he spoke with them, and their office would be contacting me for an appointment. Thank you!!!!!

I was contacted by the pediatric cardiologist's office mid November and went in for an appointment at the end of November. The 2 doctors, Dr. Kakadekar and Dr. Tyrell share patients and work together closely. I met with Dr. Kakadekar. He explained that they would do an angiogram soon, and would be able to close the PDA during the angiogram, by inserting a plug into it. They other problem would need to be fixed by surgery, in Edmonton, in about 2-3 months. So, by the way he was talking, surgery wasn't an if, but a when. Wow. Scary. There's only one way to get at the heart...open heart surgery. Wow. Did I already say scary?? My angiogram was booked right away, for December 7, Sara's 5th birthday.

So, that's how it all came about...and finally, I am getting an angiogram.

A very brief post

Hello,

Welcome to Shawa's blog. We'll be putting some more information, some background on the whole reason she might need surgery, etc. in the near future. For now, we just wanted to let you know that the blog is up and running. Feel free to leave comments or send us an email anytime.