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.

Blessed are we (well almost, but that’s for later) -Tacrolimus levels are stable, no headaches. Life is good, very good.

We had our angst day, our annual angst day, the day our son goes to his pediatric cardiologist exam – the ECHO result, the day my life will either stop or sing. It SANG again. His septum is beautifully thin, no cellular evidence of disease. His physician does not believe he will develop it. We had the gene testing discussion. It was a very good discussion, my son was involved, didn’t totally understand it all and the ramifications, but it’s a start. We will continue to talk, but for now we have what we need. He is disease-clear and will play varsity ball. He’s getting college calls. All is good. All is very, very good.

We had a gathering of some very dear friends over Labor Day weekend, some of whom we haven’t seen in a while. It amazes me what people say to me now. How good I look, how much energy I project, how loud my voice is. I thought I hid my illness much better than I evidently did. My favorite, if you can have a favorite statement from someone who is talking about you being ill and now being well, is from the guy who does my hair. His comment: “You smile from the inside now.” I like 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.

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 my birthday weekend and it was very special! I spent it with family and friends. It’s what I have learned is most important to me. I knew it would be emotional on many levels – for many folks as well as from many folks – and it was.  I am just downright glad to be here celebrating another one. And when I look back at what has gone down this past year, I almost feel I don’t have a right to be here. Were it not for my donor and organizations like Donate Life Northwest, and my OHSU physicians, I wouldn’t be! And wouldn’t you know it, at this juncture, of 9 months post-transplant, we may have gotten the cocktail right. Immunosuppressant level is good, and no migraines for a few weeks on 2 prophylaxis drugs. Woohoo, indeed! I am almost afraid to commit that to writing! I am blessed and all is good.

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.

Question #2.  What things am I able to do after transplant I couldn’t do before it? Again, I wanted to say something profound, something a little different, yet truthful. Here’s what came to me last night. I see things a bit differently now, a little brighter. I am able to let go of the little things (well as long as I am not on high dose steroids!), take a deep breath, shrug my shoulders and do things that matter to me personally. Okay, so that’s the psychological side. The physical side is easier. I have an abundance of new found energy. It took a while to come, but it’s here now and I am embracing it. I can walk my 100 lb. Airedale. I can climb Cascade Head at the beach and marvel at the beauty, and most fun of all, I can simply stay awake!

And question #3: What has transplant made you most grateful for? I could simply respond “everything” and that would be true but too cliché. So I won’t. I have said this to many and I mean it genuinely. I am truly blessed to have a new heart and I know it. I know personally having lost my brother that not everyone who needs an organ who is listed and waiting and desperately ill receives one. My family and I are humbled by the outpouring of support we have received from family, friends and mere acquaintances this past year. We are in awe of the medical technology, the pharmacology and the professionals who keep me alive on a daily basis and have been there from the get go. And most important to me is that one person – my donor – who gave of themselves so I could have a second chance to live. As I have said, it’s all good. And, of course, we had to record it more than once. There were a few tears shed.

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.

Here’s an up for you all. A real up! I’ve been asked to be part of Donate Life Northwest’s video shoot for the annual Lifesaver’s Breakfast. So yesterday I was preparing, not that I haven’t been thinking about this for awhile but today was the actual shoot, and darn if my hair didn’t badly need coloring, but isn’t that so minor in the scheme of things? The breakfast theme is Second Chances.

Question #1: How has transplant provided you and your family with a second chance? Well, I thought about that for awhile and what unique perspective I could bring to this question since there are other recipients involved. I thought about freedom from debilitating disease, but then there are those with liver and kidney disease who have had a way more difficult time than I.  Then I thought about my new found energy but decided to save that for question #2. So I focused on “being there.” Yes, being there! Being there for my 16 year old son who at times doesn’t think he needs a mom – but he still does. Being there as a wife to my husband of 27 years who has been through a lot with me. Being a friend to the best friends a girl could have. Being there for others going through the transplant process which can be difficult at times, and being an advocate and educator for the need for eye, organ and tissue donation. Yes, that’s it.

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’m going to continue on this theme of the ups and downs, the bumps per se of transplant-land for the next few blogs. I’ve had a bit more time to think, a bit more insight, and this is what I have come up with. While it has been 9 months since my transplant, I still have one foot in the hospital. It’s not just the biopsies, clinic visits and blood draws. These past few months especially have been trying. The rejection episodes are really scary. It has been touch-and-go as to whether I would have to be admitted for the big gun drugs or whether the high dose steroids would suffice. That was very difficult and probably even more stressful on my husband who was done with the blood pressure cuff and thermometer in the family room months ago.

Having been through 8 years of heart failure, being placed on the transplant waiting list, going through transplantation and recovery and having a somewhat difficult post transplant course because of the drugs has been tough on everyone. We try hard as a couple to shield our son from the day-to-day stuff and that too is hard: careful of conversations, of what phone calls will come at what time, what bags are packed and where, what plans are made for whom. Will I have a massive, debilitating migraine that will ruin plans for the day for all of us? Will I be in the hospital for a week or go to the beach as planned? That gets tough, probably more so on others than on me.  I can just roll with it, or try, and say it’s all good.

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.

Yesterday was 9 months since my transplant. That’s what it takes to grow a baby. As a former midwife, I can use that as an effective analogy. While in one sense I have new life, new energy, new freedom from disease, I did not expect all the ups and downs the drugs (or the trials of parenting) bring. But it’s all worth it. It’s all good. My latest biopsy result was a 1, so it appears the rejection scare has been taken care of by the two high dose steroid pulses and returning to tacrolimus as my primary immunosuppressant. The migraines have returned but are better managed with a whole arsenal of drugs from prophylaxis to prevent them to triptans and narcotics and anti-nausea meds when I do. We don’t have the levels quite right yet.  I’m still Alice in Wonderland, too high or too low with just the slightest change of a drug, but we’re working on it. I have faith they/we will figure it out and hopefully soon!

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.

A second interesting thing happened the same day as the winery tour. I’m trying very hard to adhere to all those new rules and regulations in the “red book” of post transplant living. Avoiding exposure to the sun is another hard one for me. I am a sun worshiper, made harder by living here in the Pacific Northwest. But adhering to this rule?  I am, for the risk of skin cancer for me now is very, very high. I have purchased lots of 70 SPF sunscreen and keep it in my car, in my purse, in all the bathrooms. I have bought hats – lots of hats!  Hats that I previously did not like to wear have become standard attire this summer. I have also bought lightweight, long sleeved blouses to go over tank tops and longer shorts and capris.

So today, I am dressed in a tunic with long silk shorts and a big straw hat. This woman comes over to me and says, “I like your costume.” Costume? I think, hmmmm. “I can’t be in the sun” I say, reserving the real headliner for later if I need it. “Neither can I” she says, although I can’t help noticing her linen tank dress. “Where did you get your tunic?” she asks, and I reply honestly that I can’t remember because I have been buying a lot of things like these the past few months. “May I touch it?” she asks. ” Go away!” I think to myself.

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.

A very funny (I think) thing happened today. I can see this scene so vividly if this blog becomes a book, book becomes a movie scenario.

It is an absolutely quintessential Oregon summer day, cloudless blue sky, no humidity, high 60’s heading into the 70’s. A friend is in town from Dallas and a neighbor has a wine club membership in the valley. We plan to taste some wine and have a basketful of good food. We have a lovely drive, listening to good music, watching the clouds clear. We pull into the winery and I choose a table – in the shade, of course. Have just slathered myself with SPF 70 sunscreen, and my neighbor says my car now smells like the beach. I pull my bottle of Pellegrino out of my bag along with my big straw sunhat.

I am just taking in the beautiful vista when I feel an arm around my neck and turn to see my transplant cardiologist with a big grin his face. I say to my friend, “Well, my day has just gone to hell in a hand basket” and laugh! Just then my neighbor, unaware of what’s going down, returns with three tasting glasses and places them on the table. It was classic. And again I am blessed, because before my physician and his friends leave, he returns to our table outside and says, “It’s all about quality of life, Susan”.  And so it is. And by the way, for anyone who wonders and I have gotten many questions regarding this matter, the “red book” given to all transplant patients which goes through the rules and regulations of post transplant life, says “avoid alcohol in excess.”

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.

The word ‘rejection’ is ominous!

I have been thinking a lot about the word ‘rejection.’ It’s not one that conjures up warm fuzzy feelings. In fact, it’s just the opposite. For me, it has brought mostly fear and sadness. Whether it’s rejection from love, a college admission letter or now most important my new heart transplant, the word ‘rejection’ is ominous indeed.

I had my next biopsy, the one that was to determine admission to OHSU for the big guns, or more optimistically that the two high-dose steroid pulses worked to devour the antibodies my body is making against my new heart. I was calm during the biopsy. A little angst when the first catheter didn’t go right in but the pressures and hemodynamic function were good as they always have been. My physician recommended an ECHO just to make sure things were good. It was awesome to see my new heart on the screen – four chambers with a nice thin septum in between! Now comes the hard part of waiting for the results. Hope to have them back today, but I am not counting on it.

I waited until 7 pm to call the transplant coordinator. No dice yet. That’s ok. I sat down with a glass of wine and chilled and thought good things. Stayed really busy all the next day. Big bag packed for the beach, little bag for the hospital. Call came at 3:00. A 1R! WHOO HOO!! The steroids did their job. Happy! Happy! And the tacrolimus level is on target. Didn’t hear about the ECHO but assume all is well on that front. So it’s off to the beach for some R&R and a bit more cleaning but the steroid pulse is wearing off.

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.

So, it’s a bit more than scary now. To hear your physician say (and I could palpably feel the angst) “you are rejecting your heart”. First of all, I am still in denial of the whole illness thing, then there is the whole transplant thing, and now there is the whole rejection of the new heart thing – and at 7 months! What’s up with that? Well, it’s these gosh darn drugs that are keeping me alive but just aren’t working right.  So it’s back to Tacrolimus and battening down the headache arsenal, but that is okay with me. I have always said I’d do whatever is needed to protect me new heart, and I will deal with the side effects. When I described my arsenal, my doc made me laugh. He said “you are a street druggie’s haven.”

P.S. don’t tell anyone.

And here’s the low down: if the next biopsy on Thursday is another 2, I get admitted for a week (a long time to spend in the hospital) for the big guns. The kind I had the first 4 days after transplant when I had no idea what was going on. But poor Kathryn and Fred did. I assumed I was just floating on my float in my lake. I so hope I don’t need to do this again! Biopsy is Thursday at 9:00am, and we should have results later that day. Husband and I had planned to go to the beach soon away. So now the plan is to wait for biopsy results and then go the beach – doesn’t that sound like a nice plan? I’m packing for the beach (ever the optimist thanks to my commitment to my brother Seth) but also putting a few things aside for a week’s stay at way more than the Hilton. Must demand a room with a view like last 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.