Posts Tagged ‘Hypertrophic Cardiomyopathy’

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

I had an interesting insight, an “Aha” moment, this week. Stems around denial of my illness – how sick I really was, how sick I needed to be to receive a new heart, that I have been transplanted and actually have a new heart, how iffy that went and how it goes now. Here’s what I came up with, and this should keep my therapist working for years! If you are not sick, you can’t/won’t die. Now, how’s that for a coping strategy? I mean, it’s perfect! It makes everything else fit together for me. Things like how do you prepare for a heart transplant? How do you as a mom to a teenage son whom you love more than anything in the world think about the impact of your death on him at this stage of his life? I mean he doesn’t even make his own breakfast or wake himself up or do his laundry (or put his laundry in the basket, for that matter!). How do you, going off to the OR, look at Kathryn in the hallway and think “there will be no more fun?”

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

11/11/11. Interesting numbers, interesting day, interesting reflections for me especially.

One year ago today on this date, Veterans Day 2010, I received a call about a heart for me. An experience we now affectionately refer to as the “trial run.” But what memories we have of that day! Fred, Kathryn and I had to discuss how we would handle this day going forward. Were we to remember it – and this was my vote – as Veterans Day every year?  That would just make it so much easier.  We have so many things to remember, and I am on so many brain-numbing drugs, and it’s a good day to honor it all, be it veterans or donors. I am not sure I ever got a conclusion from Fred, just lots of memories. But oh, from Kathryn!!  This day is no longer important. It’s the real deal that matters, the day that really trumped it by far. She made me laugh. Always a good thing.

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

I was reading my church newsletter and was very struck by a column entitled “Have you made peace with God yet?” I have to admit throughout my illness and Seth’s death I have struggled with my faith and my faithfulness. I have found comfort in the fact, or shall I say belief, that I am at least a spiritual person. The next article in the newsletter brought me even further comfort and maybe even joy. It spoke of how so many find God in nature. “Yes!” I wanted to shout out loud. “This is me.” I have made peace with my God, for nature is where I intensely feel a spiritual presence – when I am out walking, breathing the air, when I am at the lake or the beach. It was a similar sense of awe at every birth I attended, the power of life and the raw beauty of a newborn. And I can convey this feeling to the new life I now have in my chest. So yes, perhaps in a sense I have made peace with God, and if not fully, perhaps I still have a bit more time.

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

We are at 11 months – yahoo!! Getting close to 1 year. An anniversary, an important one according to OHSU. I am getting a long list of appointments to set up: angiogram (yuck) instead of a biopsy, which means a groin stick and all-day lay down, echo, bone density, yadda, yadda. But the good news is after this one, the biopsies go to every 3 months. I know at least the parking guy will miss me! The last biopsy result was a ‘1.’ We were hoping for a ‘0’ – hasn’t been one for a very long time. However, it also means I’m not overly immunosuppressed, and that’s good in the long run for all those other bad things. But you know my mantra by now – it’s all good and it is 11 months!

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

Get through it I did! Well, maybe I should wait until the evaluations come rolling in, but I feel pretty confident I did okay. When I got to talking about me, the so-called “3^rd perspective,  “ I led in with video shot in 2007 by Donate Life Northwest.  It shows me talking about my brother Seth and the registry, all with confidence that if and when, when and if I needed a transplant… And I talked about the rocky road (oh, boy!) until November 20, 2010 when I received my new heart. And by God, if those 30 sophomores and juniors didn’t start clapping! Now, that is not a reaction I had prepared for, and all I could do was laugh! Way better than blubber.

This may even trip the Dr. Kim-in-the- vineyard funny scene in my movie. I will forever remember this moment. And I have shared it with many!

The only thing I wish I had stressed more is my gratitude for my donor.  Next time.

I came away understanding how meaningful it was to me to be “back on the circuit” for Donate Life Northwest telling my story and how poignant it was for me to stand up there with a new ending to the third perspective – my life.

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

Another first today: I spoke with a new ending!  I thought I would blubber, but I didn’t. Perhaps it was because I had an hour and a half with high school students and I felt I had to keep them amused.  So I kept moving among pieces of my story – my donation perspective from my work history to  my brother and then back to me, which kept me – steroid me, Neurontin me, Topromax me -  very distracted as well. No time to focus on blubbering.  All efforts focused on keeping on task.

I worried and stressed over this presentation. It came on faster than anticipated because of a last-minute need for a speaker, and I felt compelled to help. I was close to being ready so I jumped in. I was preparing for a Discover OHSU! presentation and was working with Donate Life Northwest staff on the new ending with different media including photos (“a must”, they said) of my hospital stay at OHSU.  Pretty graphic, but very engaging for high schoolers.

So off I went to Rite Aide and blew up and posted on construction paper very graphic photos of myself, all the while thinking, “How the hell am I going to get through this?” I spent the few hours before leaving for the presentation watching the Donate Life Northwest video and refining my points.  Worry and stress, worry and stress.  Want to get it just right!

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

It was bound to happen. I am at almost 11 months post transplant and have not been sick. Not even a sniffle. I told my family and friends back east this, and I guess I should have knocked on more wood. But then, I got to thinking about it during some of my 3:00am wake ups.  For the first 3 months post transplant, I really didn’t venture out much.  If I did, it was only to appointments (many) or basketball games, and then I was masked and gloved.  Plus I was on antibacterial drugs and antiviral drugs (with huge co-pays!)  So it’s no wonder that while my household came down with strep and pneumonia and I was freaking out and hiding out in our guest room, I never got sick. Well, until now.

Seems I caught some version of the pesky common cold for the first time since transplant. From an intellectual standpoint, I will be curious to see how my body responds, or more likely doesn’t, and how the transplant center reacts. Gargling with salt water and snorting it as well seemed to help for a bit, but now it has taken hold. I feel crappy and am having a full-fledged pajama day.  I debated calling the transplant center – you know, why bother them over a common cold, but then again, it’s new for me.  My blood pressure is low, I have a slight fever. Yes, these are the dilemmas in transplant land. I called.

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

Well, I did it! I got on a plane for the first time since transplant. I admit there was a bit of trepidation on my part and on the part of my physicians, but this was a very important event: the wedding of my other best friend, my east coast friend’s daughter.  I felt the need to be there for oh so many reasons.

I asked my doctor what the main concerns were and thought the airline travel would be number one, but surprisingly, the answer was a different environment – exposure to different germs, bacteria, viruses etc. I felt more confident with my decision then since this environment was my home for 15 years, and I have been back every summer for the last 5.  So I’ve been exposed to these bugs before. This was no foreign environment for me,  just for the new guy!

Getting on that plane I dressed for war, however. Armed with boots, leggings, gloves, long sleeves, long underwear, scarf, my own pillow and yes, of course, the old duck bill mask came out of the bathroom closet. I think it all worked well. When I went in for transplant, I made a promise to Liana (the bride) that I would dance at her wedding – and I did!

I saw a few cherished friends on this brief trip. I had to keep it under wraps for obvious reasons. The main purpose was the wedding and I kept it short for the doctors – in and out, long weekend for an important wedding. I was there for Kate and her family and for me to be part of it. I had a ball. I know there was curiosity about how I would look, feel, and behave. I think I passed muster all the way around, and there was an enormous sigh of relief throughout the Finger Lakes this weekend!  Can’t wait now for next summer when I can see the whole clan, stay for the whole summer, celebrate and enjoy life on the lake as usual – be back home.

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

I have been connecting with others, both those who are post transplant and those who are waiting. This is my work now, and it feels very right to give back. I had an interesting experience today around this topic in a response to my blog. Someone asked if the mom of a young man waiting for a heart transplant should read it.  I was surprised by the silence in the room. And to be honest, of the 10 people in the room, probably only 4 had ever read the blog, but they all looked at each other and said, “It’s very real.” I laughed. And so it is.

I did answer the reader who was about to refer me to her friend and her son.  I told her when I speak to those actually waiting, I tailor my conversation to what they can hear at the time and don’t scare the bejeasus out of them. At least not until they are ready! No, really, I always go slowly and always emphasize this is my journey, and that their journey will be theirs and likely very different. Every story I hear is different from all others, and that is why connecting with others is so important. Sharing our stories is so powerful because unless you have actually been there, you don’t get it.

So this meeting of 10 people was a Donate Life Northwest Speakers Bureau update. Yup, I’m ready to go back on the circuit. Excited to get out and tell my story again. But my story, at least the “third perspective,” the really personal part, needs to be amended! I need some time to think about how I will tell the story of my transplant experience, some time to plan a video or some such component. Maybe incorporate what I did for the Lifesavers Breakfast video on Second Chances. Some time to say it to about a million people before I can get through it without sobbing uncontrollably. A few tears are okay, even powerful with teens, but not uncontrollable sobbing. That’s embarrassing!

The author is a heart failure patient going through the post-transplant 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.

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 posts to this blog every Wednesday so you can ride this interesting, bumpy road with her.

We almost have the cocktail right! I was afraid to talk about it being so good. I kept knocking on wood, and then one night – boom. Woke up with a hammering head at 3 a.m. and already nauseated. Knew I was in for it, and I was. Bad, bad rest of the night and all the next day. Even the liquid morphine barely helped, but it did make me sleep a bit. I now have created what I call the “black box.” It contains the arsenal of anti-migraine drugs: the injectibles, the nasal sprays, the narcotics, the anti-nausea drugs.

But I have a new favorite addition I found in an antique store, and I just love it. It’s an old fashioned ice cap! And it works so much better than a plastic bag which leaks all over my head and bed. And filling the bag is the one tangible thing my husband can to do to help in an otherwise helpless situation. We have also increased one of the prophylaxis drugs based on this last killer migraine, and bless them at OHSU- they even mentioned acupuncture before I had to. I will follow up on that next clinic visit.

So while we are talking about the unpleasant side effects (now remember, my new heart is great , but the drugs are very difficult for me), the diarrhea is increasing and now becoming not only annoying but uncomfortable. They say it’s from the drugs. However, it actually has the benefit of helping get my core abdominal muscles in shape. Besides losing weight and having fit abs by summer, if this continues, I could actually wear a bikini again. But no one would notice, and I can’t be exposed to the sun! Now where is the justice in that!

The author is a heart failure patient going through the post-transplant 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.