Archive for the ‘Uncategorized’ Category

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. 

Had another biopsy yesterday, two weeks after the last positive episode. I admit I am a bit unnerved about this whole thing. So I had to ask what’s next. Considering my last cyclosporine level showed I was not therapeutic, not by a long shot, I won’t be surprised if this one is too positive. How positive is the question. I got the sense they are not going to mess around. If this is a ‘2’ after the steroid pulse, I’m in for the big guns. So sitting waiting for the call. We were to go to the beach this weekend. I have started two pilew – one for the beach, my preference by far, and one, which I hope to dismantle shortly, for the hospital.

The good news is I did dismantle the hospital pile; the bad news is the biopsy was again a ‘2.’  I’m grateful the docs are willing to do another steroid pulse, a bit stronger this time, and also increase the other immunosuppressants. So I am at that the beach and battening down the hatches. I have my worry stone with me for karma. I wrote my group email about the “good, the bad and the ugly”. I envision packman-like objects (made by my own body no less) chewing on my new heart. So now my plan this weekend is to sit with my worry stone, summon my positive karma which has gotten me through so far and  envision those packman cells being blasted away by the steroids. That and hang on – I won’t say ‘for dear life’ yet again, but it did occur to me.)

The beach has been very therapeutic for me as water always is. I have shed tears, called up inner strength, held my worry stone, recalled enormous support from my friends and family and am willing this away. I sent an email to my primary cardiologist as he knows me best and actually has seen the slides of the biopsy. He was so sweet to have the coordinator call me to make sure I was OK. I said I knew it was the steroids too, but I was freaking out. The resolve is getting the right immunosuppressant ‘cocktail.’  Hopefully no real damage done to my new heart. My hemodynamic readings are great. Next clinic is on Monday, biopsy Thursday. I am envisioning packmen gone and ever so liking it.

I will admit I am scared. Through all the latest trials and tribulation I don’t want any bad things to happen to my new heart. I am coming down off the second steroid pulse. The down is always harder for me. Very spacey. I do still however have a lot of energy. Cleaning things here that haven’t been done in a while or maybe ever. Feels good. A very interesting thing happened today though. It’s powerful. I mentioned to someone recently that I haven’t had a sense of my brother for quite some time. It didn’t really bother me. Well hey, he’s back big time. In my cleaning frenzy I came across some of my brother’s stuff.  Most important to me was the Celtic cross he wore. I will now wear it until things settle down. Eerie that it fits right into my scar. The second thing was talking to my sister-in-law today. My nephew married and his wife is pregnant! They will have a son. The Hassett lineage will live on. And he will be called “Seth,” the name my brother adopted. Cool!

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 I am kind of getting used to the new deal. It’s summer. I am not at the lake. I am, however, trying to make the most of my summer. Slathered in 70 spf sunscreen, hat on, long sleeved breezy silk top over a tank top, out I go for a walk or sit in the backyard to take in the birds, the flowers, my latest book.  A different summer, but I can get used to it. I think my physicians would be proud. No pressure about the lake and sunscreen and hats stashed everywhere, the car, my purse, upstairs, downstairs. Those other guys – my transplant buddies who are enduring treatment for skin cancer – made an impression on me so I am taking care as best I can. Hard as it is, I am behaving.

Part of my new and different summer is to just get out and enjoy all Portland has to offer. And isn’t it grand? Right on schedule after Rose Festival, summer arrived. It’s so beautiful! Took in the Waterfront (there it is again) Blues Festival. It was very cool, great venue, great artists, great people. On the second day with Kathryn, I squeezed (rudely, at first) in next to a woman. We exchanged pleasantries. It was very cool in the morning when I left home but by late in the afternoon when the sun came out, it warmed up.  Per my new plan, I was covered pretty much head to toe. Happened to have on a black jacket and cropped jeans. When my neighbor asked if I wasn’t getting too warm, I explained why I needed to be covered. She shared her story – recovering from ovarian cancer. Then Linda Hornbuckle came on and sang “grateful.”  My neighbor and I looked at each other. No words necessary.

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 bumpy road with her. 

The steroids weren’t as bad as I had anticipated. A bit wired, my house got very clean. Dusted places I haven’t even seen before! I had some trouble sleeping but I expected a whole lot worse. I only hope they did their job and my body behaves and stops attacking MY NEW HEART. I envision Pac man-like creatures eating away , and then I get really freaked and have to go back to Lamaze breathing. Another biopsy soon will tell the tale.

After that little digression, let’s get back to the “spread the word” thing. I am honored to have been asked to be a part of a new video for Donate Life Northwest. It will be shown at the annual fundraising breakfast in November and it’s about second chances. They want to capture me doing things I couldn’t do before transplant. We chose three venues: walking the waterfront and including my 4 year old, 100 pound rescue Airedale named Rex. He’s a load for sure and while I walked him before transplant, I couldn’t really contain him around other dogs – he got too excited. He’s just curious. We are working on it though and he’s coming around, kind of like me. The photo shoot with Donate Life Northwest volunteer and professional photographer Christiena was awesome. I loved her and Rex did too. And the waterfront walk is definitely part of my post-transplant life. I am down there so much for clinic, blood draws, etc. It’s just nice to get out of the medical mode and walk along the beautiful scape and take in all the wonders of the world. Blessed am I indeed!

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 bumpy road with her.

Speaking of cutting oneself some slack…I have had a few bad days. I remember reading a book called “Sick Girl” before my transplant. I actually read it a couple of times and now plan to purchase it to have on hand. When I first read it, I was disillusioned. I couldn’t imagine someone whining so. I never got a sense of joy or gratitude, just a whine. Well, now I kind of get that space too. Not that I could write a book about it nor even probably this blog entry, but I do get it.

I am sick of the drugs – the changes, the side effects, the unknown from day to day. The migraines came back, my whole body ached, feet and legs the worst on the day of my last biopsy. I woke early in the morning with a migraine. I had been toxic again on the cyclosporine. Because of all the drug changes I knew this biopsy was important. I had tried to reschedule because of a very special birthday luncheon I was invited to for a dear friend and it couldn’t happen. The docs wanted me then!  So I knew I had to get there. I felt like a Saturday Night Live skit. I took hold of my bedside arsenal and attacked. I squirted Imitrcx in my nose, I took narcotics, I dissolved anti-nausea drugs under my tongue. I put a suppository into my rectum and I slept it off as best I could.

I made my 12:30 biopsy but the tears rolled the whole time. I don’t think these physicians have ever seen me cry, and I believe I unnerved them. I just kept saying it was a bad day and I would be okay. And  I was, but it got worse. Biopsy results showed a more significant rejection than ever. Now more drugs, high dose steroids meant to wipe out the antibodies attacking my new heart. I am getting ready to fly high and hold on.

Asking for karma from the heart gods and everyone else.

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 will post to this blog every Wednesday so you can ride this bumpy road with her.

So, spread the word – I do! I met with a gentleman today who was recently listed for a transplant. It was good to have a concrete reason to sit down and put some thoughts in writing. This has been on my ‘to- do’ list for a while. I broke it down like this:

1. Bring comfort measures for hospital. I included things like your own pillow and a great pillow case; a scarf to deal with the steroid flashes; warm socks and a fleece to boot; diversion materials like books and music, an important photo
2. Identify a spokesperson. You all know how important it was for me to have Kathryn communicate with my masses
3. Plan for the post three months: get things done, have a plan for food, for drivers, create a nest, have diversion
4. Random thoughts – And probably my most favorite piece of advice and this – (I wrote on paper spontaneously so will have to recreate but it went like this)  LAUGH; get your head in the right place, expect some lows, look for the gifts, cut yourself some slack.

Yes, these are the really important things when getting ready for a new heart and going through a transplant.

I hope and I think I did pass on a few bits of wisdom, and I think I met a new friend!

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 will post to this blog every Wednesday so you can ride this bumpy road with her.

Today is seven months. My prophecy about feeling more energy and maybe turning a corner stands true. Except for the neuropathy and spaciness on the new drug, things feel good. I had an interesting and informative clinic visit last week. Met with my primary cardiologist who does all my biopsies and has known me through the whole end-stage failure thing. You remember him,  the “well Susan” guy. I wanted to see him at six months. Kathryn did too.

One of his first questions was, “what about the lake this summer?” I told him I took it off the table. He said,  “Thanks,” and looked very relieved that he didn’t have to deliver the bummer news.

Back to the visit, his take is the same as ours but he put a very positive spin on the 1R biopsies – the five that I have had in the past five months. He did remind me that I have also had five zeros but that was early when I was flying high on all those drugs. I wish I could have pulled that response out of my brain but due to the spaciness, I didn’t. What he said was that is his goal -1Rs are good. It means that I am not over immunosuppressed and that he is helping me in the future. He’s saving me from all the really bad stuff like lymphomas and other cancers. Compared to those big guns migraines are a drop in the bucket. He said one other thing that resonated with me (and again in my spacey state couldn’t respond so I sent him an email).

Here’s what he said, “We transplant patients to give them back a quality of life.” How very true. What I should have said and did email him was this,

What you and my donor have given me is my life back. And right now that means being a mom to my almost 17 year old to whom I am very tight (what a gift!)  and while independent he still very much needs me  (an explanation here – who else would wash those wound up white basketball socks; who else would feed him every few hours, balancing the carbs and proteins; who else would make his bed; check his bags before sending him off to basketball tournaments all over the country and who else would be such a proud mom and love him so profoundly?) So back to the email, before transplant there were many times I couldn’t be there for him and that hurt both of us. We are both now very grateful.

His response: “seems the gift you are giving to your son and others is the true gift that transplant affords. I hope you will continue to spread your positive message to others.”

So there you have 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 will post to this blog every Wednesday so you can ride this bumpy road with her.

I think reaching six months is a big deal. An anniversary to celebrate and a point in transplant which all my doctors said, “Oh, you will feel so much better.” And you know, at six and a half months, I am starting to believe them. Yes, we are still dealing with a lot of the side effects and changing drugs and doses all the time. But here’s the deal. I feel more energy for the first time in a very long time. I still sleep 12 hours (and there is usually hell to pay if I don’t) but when I am up, I am up!

I love it when my friends have to stop on a walk before I do. I now remember my physician also saying that the failure piece of me would take a while to overcome and that’s what I think may be happening. That whole fluid, shortness of breath, fatigue thing (well maybe not the fatigue thing) so if that is gone and the cardiac rehab is done, and my new heart is good or maybe even great, then all we have to figure out is that drug cocktail thing and everything will be great…but 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 will post to this blog every Wednesday so you can ride this bumpy road with her.

So I have a hero story to share. It overwhelms me to even think about it now. I made my first and hopefully because of it, my last big, stupid medication faux pas. I went to the beach for Memorial Day weekend with my husband. A dear friend came in from Dallas (Texas, not Oregon). My son was in San Francisco for a basketball tournament. I took out a whole box of each of the doses of cyclosporine that I take. You know extra drugs in case of a tsunami, I am thinking, be prepared. All well and good except I left those two boxes on the bathroom counter and never put them in my bag. Bummer.

I discovered my error Friday morning when I filled my pill box for the day. I called the OHSU Specialty Pharmacy and told them of my error. They figured the best plan was to Fed Ex a box to me. Cool, way good, I think, only to learn several hours later that Fed Ex won’t deliver to the beach on Saturdays. Another bummer. But, here’s the deal and the unbelievable hero story. The pharmacy tech calls me and says she and her husband love the beach, come all the time, don’t have plans for the weekend and she will personally deliver my drugs because I have been through enough and deserve a little R &R with friends! (I would have had to go home two days early if not for her!) Saturday morning my hero arrives, drugs in hand. Talk about customer service! Oh, the letters I will write on her behalf.

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 will post to this blog every Wednesday so you can ride this bumpy road with her.

It’s my six month anniversary. I remember the last time I thought about a six month anniversary. It was April 1985. It was my six month wedding anniversary and I was back in San Francisco- the scene of the crime! My husband and I were married on a yacht in the Bay compliments of my brother, who arranged the whole affair. It was fabulous, intimate with only very close friends and family. Anyway, on this date  in 1985 I happened to be back in SF at a conference. I decided to send my husband some flowers. I won’t tell you his first response and who he thought the roses were for, but he got better after that!

This six month anniversary is one to celebrate, six months with my new heart. We are working better together and from that standpoint things are good, really good. The drug thing still needs work, but we will get there.

So here’s what I did to celebrate my six months. I posted my donor family letter, it’s out there now in their hands. It felt very good to send that off. I attended a Donate Life presentation – a play, scripted and acted by a young man whose brother received a transplant when he was five and ultimately died. It was very poignant to say the least. Talk about laugh and cry, and Kathryn again was right there with me. I also walked as part of the OHSU Cardiac Rehab “All Stars in the AHA Heart Walk”. It was three miles around the waterfront and it was fabulous. I got my picture taken as a “survivor” and so I am, and very, very grateful to be one. I intend to stay that way.

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 will post to this blog every Monday and Wednesday so you can ride this bumpy road with her.

 You are told to expect it at least once. So, I was not surprised for a couple of reasons. The first was my level of immunosuppressants was low for several days. Appears I am very sensitive to the drug and ping-pong back and forth between too high and too low with a few perfect days in between. The second being the day I couldn’t get my evening dose of drugs down due to the vomiting. So I have had my first sign of rejection.

 At the fifth biopsy, seven weeks post transplant. They say this is a common time because one of the powerful immunosuppressant drugs administered in the ICU a few days post-op is wearing off. I don’t have any symptoms of rejection, which is why they do the biopsies to catch it before there are symptoms or more importantly before there is any damage done to the heart as my body tries to fight off this perceived intruder. My right heart pressures are good. Because my immunosuppressant levels are high again, they do not have to do anything else. That is good and I am not upset. Could just be one little spot on one of the five biopsies they took. Will find out more at my clinic visit Wednesday.  For now, let’s get the other things under control which is happening with the levels coming down again.

  Just another bump in this amazing journey. It remains all good.

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.