What. A. Day.
I am completely drained, exhausted, part of me wants to cry, and part of me is completely at peace. Most of the day the doctor's office will do that to you.
Today was a big day I'd been looking forward to. Today was the day I was going to get to meet with my cardiologist who I haven't seen in 4 months or so. I usually see her nurse practioner, but I asked to see the doc because I had been feeling so lost and needed to get the state of the union from her.
Nick warned me not to get my hopes up too high for the appointment, but in typical Jana style, I thought of nothing else for the past few weeks, wrote up an extenisive list of questions, and read every article I could find online about my condition. I'm nothing if not thorough. : )
Well, to me, the appointment was a big fat bummer. Nick saw it very differently. The main thing I was hoping to get was an action plan of something different we could do that could really improve my energy and quality of life. Maybe get Sparky another wire to help the pace of my heart. Maybe try a new drug. Maybe some fancy new treatment. No. She said all she wanted to do was keep ticking up my drugs. And I started crying in her office. I just felt so stuck.
She did have quite a bit of encouraging news to tell us, but I was in no mood to hear it. She said the results of the bike test I did a month ago were actually pretty good (the nurse practioner read the results wrong) so my heart can withstand excercise pretty well, so keep up the cardiac rehab. She also said my heart has shrunk a tiny bit (about 4 millimeters). That is a miniscule amount, but it's not getting bigger. And that transplant in the next few years seems pretty unlikely. Which is certianly good.
All in all, it was an ok visit, but I told Nick I think the problem is I almost feel like she's being too positive about the whole thing. To me, she's acting like this condition is not that big of a deal. Nick sees her as being optimistic and not dwelling on the bad stuff. I'm just not sure if I like her approach. So I'm kicking around the idea of getting a second opinion. Not that I think someone else will say something different, I just wonder if I'll like the way someone else says it. I haven't decided yet, but I'm positive I need to sleep on the idea and not making any decisions when I'm this loopy.
So the second doctor's appointment...I don't think I've told most of you this yet, but Nick and I decided to go see a Perinatologist (high risk obstetrician). We aren't ready to have kids yet, but we thought it would be a good idea to talk to someone that handles cases like mine, just to get the lay of the land.
It was to our good fortune that I was referred to one of the best perinatologists on the west coast. He actually invented a test that looks at the aorta and can tell how the heart will respond to pregnancy. He routinely has 2-3 people with cardiomyopathy in his care at any time. He's kind of a big deal. : )
He was straight-up awesome. He was super blunt, but also very caring and he was acutally willing to give me options and tell me what our course of action would be in each scenario. He gave me the facts and I will love him forever for that. : )
He starts off by saying that he virtually never tells anyone not to get pregnant. He likes a challenge, he likes to help people have their families, he's not scared of much. He said I was one of about 4 people he has told to not get pregnant right now in his 30 year career. My heart's pumping capacity is simply too weak and the likelihood that I would die during pregnancy is almost certain.
But he then went on to say we need to wait about a year to 18 months to see how much my heart has improved. He wants my ejection fraction to get to 50% (it's 20% right now). If we can get there, we should be able to have a baby. I would be monitored incredibly closely (like going to the doc 2x month at first, and then going to 2-3x week near the end). I may end up on bed rest. And it's still risky, but he said people have babies all the time like that. This is the best case scenario.
The next scenario is if my heart gets worse within that time. And if it does, then it's transplant time. And he said having a baby a year after a transplant is no problem at all. Almost as low risk as any other pregnancy.
Then there's the scenario where my heart improves some (say to 35%) but I can't get over the 50% hump. That's the hardest scenario. We could weigh the risks of pregnancy at that point, but it would be a very serious conversation. We could also wait and see if my heart got better in the years that followed. As much as we don't want to wait for years, the doc said we could wait 5-10 years if we have to. I just hope that's not the case. And then there's always adoption. We'll have a family no matter what. It's just a matter of how we get there.
We talked about drug changes, and tests he would do when I got pregnant and it was all very good information. He also talked about how much weight loss can help, so that is our next plan. It is one of the only things I can control in this whole mess, so that's where I'm going to focus my attention for now. It's got to be slow, but I know we can do it. He wants to see us again in a year to see where my heart's at, and we'll reasses then. And he said to take this year to relax, enjoy each other, work on getting better and don't worry about this stuff. We'll handle whatever the answer is when the time comes.
All in all, I was SO relieved to talk to this doctor today. It was just what I needed. I felt understood, encouraged, excited, happy, informed and hopeful. That's exactly what I needed and it makes for a great start to the weekend. Nick was super happy with the appointment too and I think we can let some worry go for now. I may still make the second opinion appointment, but maybe not. Maybe I just need to trust the process and give the medicine's time to do their job. Patience is not my strong suit, but this diagnosis is turning out to be a crash course in patience. So I'll try.
I'm going to pass out on the couch now.
I love you all!
Jana
ps, did anyone see Grey's Anatomy last night?? Whew, I had to pause it 3 times just to let my heart calm down. McDreamy!! No!!!!
5/1/2010-Thinking ahead
Hi All,
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Love,
Jana
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Love,
Jana
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