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Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process. She will post to this blog every Wednesday so you can ride this bumpy road with her.

So from hell and back in 24 hours. The next morning, not a pajama day at all because I am up, dressed for my walk and sipping some homemade, no sodium soup (light meals are all I can handle these days) when the phone rings. It’s the cardiopulmonary lab, they have an opening in 45 minutes. I am out the door. (But after I call the office of Donate Life Northwest, because the reason I am up and dressed is that I am to speak for them at OHSU. I am an active volunteer, telling my story to whomever will listen in order to raise awareness of the need for organ donors. I tell them I will be there, but I will not be there until after the first presentation. It should have worked, but you know the best laid plans……)

As I make my way to the Hill,  as I have done a hundred times across Terwilliger Blvd, I am struck with the magnitude of this test and IT’S results. I am suddenly less sure of my intent. Perhaps I should just go to the students…It is much easier to tell my story than to actually have to live it.

I have had this test – the MVO2 – several times before. I know the drill and more importantly I know the numbers. The numbers that will get you listed. I have a deal with the physician, whichever one attends the test. I will not get on the treadmill unless I have their commitment that they will tell me the number at the end. This guy knows me, the deal is solid.

Now I have worked my whole life in healthcare and I know things go wrong. Equipment fails, computers shut down patients have complications. But do all these things have to happen to me, today? They do. All hope of meeting my obligation to Donate Life NW and the students ebbs away as I am hooked up to EKG leads, attached to a pulmonary function machine, with tubes stuck in my mouth and a nose clip on. Not to mention that my cardiologist walks into the lab, says, “good morning, Susan” and I can only think oh-oh. And then he smiles, that smile I am getting to know, and takes my picture, saying  “for later”.  Does he mean AFTER?? Hmmm…

Things get resolved as they usually do and I am off and walking. I am determined to beat the odds, exceed expectations and earn my summer trip home but I am worried. I work hard but hear comments, “is her pulse ox really 93 on room air?”. That is not good. I keep working knowing the treadmill is going to speed up, going to incline faster and faster. I point to my effort/symptoms on a chart, it’s severe. The treadmill slows. I have done 17 minutes, less than last time, my lungs feel like they will explode and I am lightheaded. All is lost for talking to the students. They have left.

But. But here’s the thing. My score is 21. 21! That’s huge in transplant land. I may have just secured my summer. I pass the students walking down the hill and apologize for not showing up. But they sense my giddiness. I tell them I think I just booted myself off the transplant list.

I am glad I have a therapy appointment next to process all of this.

*disclaimer*

The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process. She will post to this blog every Wednesday so you can ride this bumpy road with her.

Post 6

So, I think there is a song that goes, “Mama always told me there’d be days like this”. Well not my mama, but…. It is a day like that. Really bad chest pain which was what woke me up. Often does. It’s Wednesday, a telecommute day for my husband, which means I get to sleep in and he gets our son off to school. I plod downstairs, still in pj’s to get the paper. He says, “don’t know if you should read this or not. If it will make you feel better or worse”. And this is before coffee? And there on the front page of the Oregonian is the headline, “Captive to a Wounded Heart” and a diagram of a ventricular assist device and an image of a defibrillator. There is an accompanying story of a brave young girl, another heart failure patient heading for transplant complete with comments and quotes by my physicians. Remember my texture comment, IT’S getting all too real.

Then it gets worse. Still in my pj’s (I actually love pajama day, days when I kick back, feel no obligations looming, accept my fate –kind of and hang out). The phone rings. It’s the cardiopulmonary lab at OHSU calling to reschedule my appointment. THE appointment, one of the definitive test appointments to being placed on the transplant list. And not only are they rescheduling it, they are rescheduling it for a month, A MONTH, later. It was actually 5 weeks to be exact. Ouch, that was unacceptable to me as a patient, as a nurse, as an administrator, with so much riding on it. I have the presence of mind to share all of this with the poor scheduler and ask to be put on the cancellation list.  Thank God it’s a pajama day and I have no obligations because I crumble. I don’t usually loose it but I did. I know my husband wished he was in his office downtown, and not downstairs. It was not pretty. I think I yelled a lot……

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.