and I’ll cry if I want to!
What now?
Well, I made the trip to the Mayo Clinic in Jacksonville. First, what an awesome facility. Everyone was extremely nice and so many smiles. Rare for a place filled with sick people.
Second, sigh. To say I am in a serious state of depression would be an understatement. I know I went there to find out if I could get on the heart transplant list, but I guess deep inside I was hoping they would say I was just a fat hypochondriac and send me home with a diet that would fix everything. It would appear that things in my own little world don’t always turn out the way I think they should.
The doctor was extremely nice and talked to me until I understood everything. While I do understand everything, it was overwhelming for hubby and me.
The doctor made a point of saying “I’m thankful you self-referred yourself when the doctors didn’t act fast enough, but I wish I had met you six months ago.”
Boom! First bombshell.
He explained about the stages and even drew pictures for me. He was kind of enough to remind me that my heart is “HUGE. I mean huge!” The average heart is the size of a fist. My heart is more than 3 fists. But I knew it was enlarged, so no surprise there. But then he said, “The life expectancy for someone in your condition with this heart is two years.”
Whap! That one knocked me breathless. My heart broke when I heard my husband gasp behind me.
So then we talked about options.
1. Medicine. Not hopeful because that is what we have been doing for last five years with no success.
2. LVAD. If you don’t know what this is, visit this link. http://en.wikipedia.org/wiki/Ventricular_assist_device
3. Heart transplant.
Obviously the transplant is the lesser of the evils, but there is still so much to do before I know if I even qualify.
Then the doctor said, “If you had waited any longer for one of your other doctors to refer you, it would probably be too late. I think we have you here in time.”
Kapow! So having two sets of doctors did me how much good?
Don’t get me wrong, I like all my doctors. They have helped me tremendously, but shouldn’t they have known to send me? What exactly were they waited for? They all asked if I was on the list, but none sent me. A little bit of anger there, but I’ll get over it.
The doctor went on to explain that there are certain protocols in place that are to be met before a person is even evaluated. But he feels I am too far advanced with heart damage to wait and has approved an expedited evaluation to get me on the list sooner. He says I am a great candidate, but still need to go through the evaluation, but quickly. They are setting up my appointments as we speak and he wants me on the list within a couple months.
Once I get the transplant it will mean at least 2 months in Jacksonville living while I go through rehab and all my follow up appointments. This is fine because I have great relatives there.
I am not sure this has all sunk in yet, I just keep thinking that I can’t do this; it’s too much; I’m not strong enough. Hubby is trying to be strong, but he looks at me differently today. I wish he didn’t have to go through all this, I know he didn’t sign up for any of my excess baggage, but I thank God he is with me, because if I can do this, it will only be with him holding my hand. I have no strength without him at this point.
I know I need a positive attitude and I will get around to it, I’m sure, but right now I just want to curl up in a ball and cry until it all goes away.
Journey of the Heart 
Thank you for sharing your journey online, so other people who need to know will have the warning that we ultimately need to be actively responsible for our own health. YOU KNEW what the doctors couldn’t possibly know: What it felt like FOR YOU. I’m so happy you’re getting the attention and treatment you need, and hooray for your husband! Give each other big squishy hugs from me. 🙂
I love you. hugs, hugs.
Karen,
Curling up in a ball is definitely acceptable on this
occasion-therapeutic even.
I think you are strong, just even for writing this
Blog post. I believe that reliance on God is good-because
of the proverbial, “He is strong in our weakness.”
And what a great hubby! He made a vow and he’s
sticking by it: in sickness and in health…
Enough advise from me,
God bless, get well (getting older is annoying,
Isn’t it!)
I love you, honey! I wish I had a magic wand I could wave and make it all better, but the good part is that you’re in the right place and good things are going to happen. I pray for you and your hubby daily. You are one tough chickie. You’ve got this!
{{{{{{Hugs}}}}}}}}
You’re heading in the right direction. You can get through this.
10 out of 10 for being pro-active … have a good cry. Scream and rage at the doctors who didn’t send you there. It won’t hurt them and you’ll feel a whole lot better for letting that anger out … then, get down and (continue to) do whatever it takes to live!
Wow. That’s a lot to process in one sitting. So very glad the Mayo Dr is agreeable. Hang in there, lady. You are so strong. Keeping fingers crossed you get a heart very soon.
Karen…you probably know my story but when I was evaluated at Mayo Jacksonville I was 68 years old with an ejection fraction of about 10. I should have been sent to Mayo a lot earlier, too. Don’t know why I wasn’t. The good news was that even at age 68 I got a heart in 13 days. I know that doesn’t happen for everyone but I also know Mayo has an excellent record in obtaining organs. I live in Jax…you can call me anytime. 904-434-6512.
Karen, we’ve been talking for a while and I just wanted to let you know how much I’m pulling for you. As you know, I went through something similar. My heart was also huge, ejection fraction below 20, meds weren’t working, defibrillator added to keep me from going into “sudden death.” As you also know, the transplant cardiologist concocted a whole new “cocktail” for me and sent me home for a month to complete the evaluation. Lo and behold, when I returned and did all the tests, they said my ejection fraction was 50 and to go tell my cardiologist there’d been a miracle! That’s been five years and I’m starting to slow down again, but I have faith I’ll overcome once more. So the moral of this story is: don’t give up. Miracles DO happen. By the way, I am not a Dick Cheney fan (shudder) but I have ordered his new book which just came out yesterday and tells about his journey. I can’t wait to read it. Hang in there, you’ll get through this.
Karen, thank God you were smart enough to go there on your own! I know that you are in good hands, and pray that all works out! May God bless and keep you in his thoughts!
Karen, I am so truly sorry to hear this sad news. I hope you get some good news that could change this situation around. I’ll be saying prayers that you can get a transplant soon and have a quick recovery. Please keep us posted. Thinking of you.