My Ice Bucket Challenge

To my fellow transplant friends:

I finally got the ice bucket challenge. I wasn’t even sure what ALS was. Then I saw this video, and I cried. ALS makes a heart transplant look like a walk in the park. Count your blessings fellow transplantees.

 

 

Letter from My Donor Family

Hello I have a new chapter in my experience with organ donation.

I received a call from my heart transplant coordinator on Tuesday. It was out of the ordinary to hear from her. I do not have an appointment till next month and I was not waiting on any lab results or anything. When I got the call it was strange. As strange as it was I was not really prepared for the news. It was kind of an emotional moment. I thought to myself oh no I have not even read the letter yet.

I had many mixed emotions run through my head over the next 24 hours. I have been thinking over the last few months about what I was going to say to my donor family in my letter to them. I had gone through many scenarios in my head. What if they did not want to hear from me? How do I say I am happy I got this heart without making it sound like I am happy their loved one passed away? What if I did not get a response from them how would I feel then? Well now a letter from them was on the way so I was relieved in one sense, they made the first contact. But I still faced a big unknown what did the letter say and who was my donor?

Well the next day I got the letter. It was hand written in Spanish. I am from Arizona and new my donor was also so that part was not surprising at all. The letter had been translated and typed out. I read it several times in English then read it in Spanish.  My spanish is very week but I understood more than I thought  obviously it helped having the translation next to me. The letter was very well written. It made me cry which I was prepared for and expected in some way.  But I was not prepared for how touched I really was.

I am happy to learn some things about my donor. What I learned was touching. He was only 17 years old and a junior in high school. I had overheard a doctor and had a clue that my donor may have been young. Confirming that gave me a chill. Privacy is part of the process and I completely understand that.  So after a little over nine months of wondering I am happy to learn more. It was nice of the family to share some things with me about them. Learning about him and his family is important to me.

His Mother wrote the letter and was very nice wished me well and was glad that her son could live on in a sense in me. Obviously I am very happy to have received my heart and cherish the gift of life I have received. She told me that he has two younger siblings. I feel saddened by their loss. Having dealt with the loss of a wife and the loss my daughter felt losing her Mom I have empathy for the whole family.

The family wants to meet me and my family I am happy about that. I would like to know more about my donor and his family. Now I have a big dilemma. What do I say in the letter to his family? It is the old cliché, “Somehow Thank You is just not enough”. And it is not in my opinion. What can I really say that captures how much their gift means to me?  How sorry I am for their loss? I think that is why I want to meet them I think I can only show them how happy I am to be alive. How grateful I am for there choice and generosity.  I don’t know if I can come up with words to express that.
Has anyone had any experiences with meeting a donor family?    Or writing a letter to them?

Gergorio

Organ Donation

Hello I am Gergorio, a recent heart transplant patient.  Valerie has posted a bit of my story in the contributor section of her blog. After recent news concerning Justin Bieber’s support of organ donation awareness I thought I would start a new post telling of my own background with organ donation.

When I was 16 years old and got my driver’s license I had a choice to check the organ donation box.  I think at that time I thought, “Why not? Nothing is going to happen to me, I am invincible!”  I was a typical teenager.

As I grew older I came to realize things do happen.  I lost a few friends to serious accidents and life and death got real. But, it was not until 1996 that I learned a lot more about organ donation.  I was 32 years old I had been married for 12 years and had a beautiful 9 year old daughter.  It was in an instant that I learned what if felt like to be part of a donor family.

I was working from home and it was about 10:00 a.m. when I got a knock on the door and was told by a police detective that there had been a serious accident.  My wife had been involved in a car crash and had not survived.  She was pronounced dead on arrival at the hospital.

The next few hours were crazy as one could imagine. In the midst of some terrible feelings I got a phone call asking me for permission to use my wife’s organs and tissues for donation.  I did not even hesitate, the answer was yes.  The man on the other end went on to tell me how or what they might do… all of that is a blur.  But knowing she may have been able to save a life or help someone else in some way gave me a bit of peace.

I was never contacted by anyone after that.  I really did not expect to be.  I knew due to the circumstances of her death that no major organs could be used.  The idea of the gift was enough I did not need to know specifics.  I have wondered at times what was used but I put trust in the donor network that they would utilize what they could in the best possible ways.

That was my first experience with organ donation.  Well, approximately 15 years went by and I again was going to experience organ donation. This time, however, I was on the receiving side.  On May 18, 2011, I received a new heart.

There are no words to express my feelings to my donor family.  I have not met them and do not even know who they are.  My transplant coordinator recommends not trying to contact them within the first year after transplant.  I realize now why that is recommended.  It has been almost nine months since my transplant and I cannot even imagine what I will say to them.  It is something I think about often. I hope someday I am able to meet the donor family and find words that can express what their gift means to me.

Of course I want to say Thank You to my donor family but somehow that does not seem like enough. Does anyone have any experiences with meeting or talking with your donor family?

High Risk Pregnancy

Atticus Catticus

My 6-year-old Atticus, who I adopted on "$19.99 Adult Cat Adoption Weekend."

Before I go into this blog post, I want to make it known that I am not pregnant. I do not have plans to become pregnant soon. But yesterday I heard the words “high risk pregnancy,” and it made me rethink pregnancy, but probably not in the way you would expect.

I always considered adoption even before I knew that I would have a high risk pregnancy. I know that I would provide a loving home for a child, and I would rather that be for a child who isn’t guaranteed to have one.

While talking with my transplant coordinator about one of my medications and the danger it puts on unborn babies, I told her I was worried about my birth control. I wanted to make sure I was on the best I could be to make sure I don’t actually get pregnant and end up with a damaged fetus. And that’s when she went into all the steps I would have to take if I do become pregnant. And while I don’t have plans (yet) to do that, when she said I would be considered a high risk pregnancy (even with a perfectly planned pregnancy), I suddenly felt sad.

Seems you want what you can’t have – or what is difficult to have. While I always wanted to adopt, now I can’t help but feel sad that if I do want to be pregnant, it will be risky for me and the baby. And I’ll have to get biopsies again. Ugg! As if being pregnant isn’t already enough visits to the doctor!

These are things to think about later, I imagine. I don’t have to worry now. But I am in a serious relationship, and I know he wants kids, but I don’t want to scare him away to bring this up to soon to him…

Maybe I can just keep adopting cats.

The Little Things

Not much to report on, just a few little things. And I hope they stay little.

First, I’m having a little pill issue. We are all aware of my pharmacy issues, so I finally switched to a pharmacy that is open until 9pm (versus my old one that closed at 5pm). So I picked up my pills Sunday around 8pm, and it was closed! Only open until 6pm on Sundays, it said. So I think I need to go to a Walgreens 24-hour pharmacy. So I did miss a few doses of pills during that time, not to mention it’s hard to get to a pharmacy even by 9pm when I’m a busy 20-something going to school most evenings until 9:15pm.

Second, I have a little sunburn. A few weekends ago, I went sailing as usual. But this time I took my dad, my rock. A few minutes into the sail, he mentioned how he finally went sailing with me because I was now an experienced sailor. I said, “no, you’re the experienced one!” He hadn’t sailed in almost a decade, yet I was still relying on him to be there if the boat got out of control. Well, that is what he expected me to do.

I panicked. Granted, it was low wind, so we never lost control. But I couldn’t take my hands off the tiller, which meant I didn’t apply any sunscreen. So now I have a little burn on my shoulder.

Finally, as you might have figured from the above little issue, I have a little anxiety. My new medicine Cellcept warns it might cause anxiety. I’m hoping I can control this little issue.

Next step is to assure these little issues don’t turn into rejection, skin cancer and full-blown anxiety. Or are these little issues lingering because of my little anxiety? Which came first, the chicken or the egg?

A Dime a Dozen

Today is the 12th anniversary of my heart transplant. From high school theater to the college mascot to sailboat racing, the past dozen years were packed with adventures of a typical teenager and 20-something. People were always surprised to hear that I had a heart transplant, if they ever found out.

On the 12th anniversary of my heart transplant, I can say I worked hard to graduate from high school, earn a college degree, land a perfect job in marketing and public relations, pay the rent, attend graduate school and still have a social life. But my heart transplant rarely, if ever, negatively affected those achievements.

In talking with other transplant patients, sometimes I hear, “I can never go to a baseball game again,” or “I need ‘clearance’ to travel.” If you use common sense and take care of yourself, you can do all of the above.

One woman on Twitter was upset that I showed my scar in my Twitter photo. I think most of us would be proud to show it, especially @rockscarlove. She pushed my further asking if I got medical “clearance” to travel abroad. Of course I talked with my cardiologist before going, but calling that a “clearance” is an overstatement.

What it boils down to is that I’m just like everyone else. I’m a dime a dozen! And the past dozen years prove that.

Don’t forget to wash your hands!

A Note from my Father

Twelve years ago, on Father’s Day, I got a call from the hospital with my new heart. In honor of Father’s Day and my anniversary, I am sharing a letter my dad wrote to another parent with a child in need of a heart transplant. 

Teenage Heart Transplant – A Father’s View

Val was diagnosed with Restrictive Cardio-Myopathy (RCM) at age 9.  She was listed at age 14 and transplanted at age 15.  She’s 24 now.

Symptoms/Diagnosis.  As she said, we saw symptoms as young as age 5 when she couldn’t keep up at soccer and was the slowest girl in running laps.  She would also say, “I can feel my heart” at times, like on walks.  The pediatrician finally caught a murmur and referred her to Children’s at age 9.  At Children’s, not everyone could pick up the murmur; it apparently was slight.  It’s entirely likely that a pediatrician with less sensitive ears would have delayed diagnosis for possibly years.

How to Know When.  The best indication we had of her decline and how close to needing a transplant was the stress test.  Each test has a number.  As her condition worsened, the numbers came down.  I plotted it all on a graph and asked her cardiologist at what point a transplant is needed.  As I recall he said between 12 and 15 is when a transplant is needed.  Her numbers started in the 20’s (I think 30-40 is normal) and came down with almost each test.  (They leveled out once or even went up, giving us some hope, but went down the next test.)  Sure enough, just as the number hit 15, her cardiologist listed her.  (If I can find it in electronic form, I can send you Val’s graph.)

Shortly before Val was transplanted, she had periods of no energy.  She was still Priority 2.  One time I had to go to school when her friends called from play practice.  Val could not get herself up from the floor (it started because she was laughing too much).  But she was in the play for the real show.  As she said, she could not make it between classes on time.  She was just about to get to the point of not being able to do normal activities, and we were planning on home-schooling her that Fall, when we got the call in June.  That was one full year after being listed.

She was lucky: she got transplanted while still Priority 2.  Her cardiologist was talking VAD if she got to Priority 1 with no donor available.

The Transplant.  The surgery itself is apparently “just another” open heart surgery.  You just have to get over not wanting your daughter getting needles and tubes stuck into her.  She and you will get a little more used to that as she gets catheters in the months before-hand.  But at the transplant itself, I finally counted up all the tubes going into Val.  I recall there being approximately 10.  I measured post-op progress by how many had been removed.

As far as worrying about something going wrong in the surgery, all I can say is (1) the statistics are really good, (2) Children’s is as good as it gets, (3) pray (or smoke or knit or whatever you do), and (4) there’s not much you can do about it anyway.

It’s “just” heart surgery, but you hate to see your kid go through it.  But there are other parents and kids who have already gone through it multiple times before the transplant.  Val was lucky in the sense that RCM was the “only” thing wrong with her.

While I think Children’s is about as good as it gets, it is still a hospital.  There is no one really responsible for complete patient care.  Each doctor or nurse has a specialty role.  They don’t coordinate that well.  Sometimes doctors will contradict other doctors or even their own previous orders.  And they don’t always write stuff down for nurses; they just leave verbal messages or orders.  I recommend you stick around your child and listen to what the doctors and nurses are saying and what’s happening with your child and what she’s saying.  And you be your child’s champion.  You might have to ask hard questions or even refuse to go along with something.  Don’t assume anything.  There are a million people coming into your child’s hospital room, each doing things or asking things.  And they apparently don’t talk to each other or compare notes.  (The assigned nurse in the IC is an exception.  She will know just about everything going on with your child and is usually right there.)

It turns out your child has one doctor truly in charge at a time.  In surgery and then in the IC it is the surgeon.  After that (in the normal hospital room) it is the cardiologist, again.  Everyone else is less necessary.  If you need to, appeal to that doctor.  (There was a time with Val when the surgeon and her cardiologist were not seeing totally eye-to-eye on something, and it came close to a turf battle.  It almost came to “she’s my patient until she leaves the IC”; it didn’t, but there was some serious glowering.  I can’t remember the issue, but I think I was more on the surgeon’s side.)

Recovery.  Val had a fairly unique post-surgery problem.  They left her heart sack (pericardium) in, which was standard practice.  I later understood that they remove it routinely with all adult open-heart surgeries, but leave it in for children.  They remove it on adults because about 2% of the time it fills up with fluid and restricts pumping action.  Apparently, it almost never happens with kids (at least infants).  Well, that happened to Val.  It also happened with one other teen transplant before Val.  I’ll play doctor here, but I think teens are more like adults in this regard – it’ll happen about 2% of the time.  (There’s not that much data on teens; it’s mostly adults and infants.)

In Val’s case, she ultimately had to go in for a second surgery – not open heart, but open chest.  And in the meantime, there were scary moments when her heart was being “choked” and we had no idea why.  (Emergency room, the biggest needle you ever saw, near loss of consciousness – bad stuff.)  Then we had to drain it occasionally (tube in the chest), which I did at home for a while before the second surgery.  It was this second surgery (about 2 months after the first) that made her scar more visible; the first one was close to invisible, or at least no keloid.

You might want to talk to the doctors about removing the pericardium during the transplant.  For all I know, they do that routinely now for teens just like they do for adults.

If that little pericardium thing had not happened, the recovery would have been great.  She came home within a week of the transplant.  Her cheeks were pink.  She had endurance and felt fine (until the fluid built up).  And after her second surgery, all was well (mostly, see below).

Rejection and Medicines.  You’ll come to know the names and dosages of more medicines than you’d think you’re capable of.  They slowly take her off some meds and reduce dosages.  At the beginning, I think there were something like 7 or even 9 pill types.  After about a year, it was down to two, and has been ever since.

They started Val out on Cyclosporine I believe, which was their standard practice.  It had some side-effects, but they switched her to Prograf (FK) after we asked some questions.  She and we liked that a lot better.  You might want to ask about that.  For all I know, FK is now the standard.

Val’s rejection was usually mild (I think the number assigned was 0 or 1).  One time the expert who looks through the microscope was on vacation or something, and they used a back-up person.  That guy said the rejection was high and they called Val in for extra steroids to be taken intravenously, etc.  It’s not terrible, but nothing you want to happen either.  In this case it turned out the biopsy was misread.  There really wasn’t rejection (or it was low).  Apparently, the examination of the biopsy is more art than science, or takes lots of practice and experience.

You can expect some “low” rejection numbers.  They actually try to adjust doses so that they give you just enough to keep rejection away.  As they calibrate that over the months, it’s not unusual to see a rejection number above zero.  If numbers get high, they give her more steroids or something.  After a year it should all settle out.  At least that was all pretty copacetic in Val’s case (after the one false alarm).

The Out-Years.  Once Val recovered from the surgery itself (some sore chest, etc.), which took weeks to a month or two, she was normal by all counts.  She had energy and pink cheeks right after the transplant.  By anything I can tell, she is normal.  It is usual for transplant patients to have higher-than-normal pulse rates.  I think Val’s is about 90 to 100, even at rest.  She has a little hand trembling (where you hold your hand steady and see if it moves), which I think is a side-effect of one of the meds.  (Nothing bad.  Probably couldn’t be a rifle marksman.)  Other than that, pure normal.  You’d have to ask Val about the scar, but she seems OK with it.

She finished high-school, then college.  She played sports as much as she wanted.  Etc.  Nine years out.  All tests since that first year have been good.  Biopsies and catheters never go away completely, but they do them less often as time goes on.  (Now its like a cath every three years.)

Summary.  I probably scared you too much.  But things come one at a time and you’ll find you can handle them.  Your kid will do better than you do.  And some people have it worse.  You’ll see that, too, at Children’s.