Birthday

1/7/2011
I have been feeling a little "under the weather" from the medication change, but Tuesday I had my biopsy and convinced my doctors to changes my meds back and now I am feeling back to normal. Really though, after getting my labs back, all that I think was wrong is that my magnesium and potassium were REALLY low. As soon as the office got the results, they called me and told me to take 8 pills of K+ and 900mg of Mg and in a few hours I felt waaaaaaaaaaaaaaay better. Some of the antirejection medications make mineral and vitamins leach from your bones and body and I think that was what was happening to me. When you do not have enough or you have too much K+ and/or Mg you can have irregular hear beats which can make you feel really rotten. I really thought everything was going wrong with this new medication and I was rejecting again, but after I took the K+ and Mg I felt fine and then the next day I got my biopsy results and it was another 1R/1A-which is no change on the rejection (I always have minimal rejection) and the inflammation went down! So now I am trying to get off the prednisone AGAIN and will go back in 2 months (after I have been off for awhile) to see if everything is ok.
If I was a normal heart transplant patient by now I would be off the prednisone, have a regular medication schedule, getting labs every month (I get them about every other week to every week), and go to the clinic every three months. Knowing this, I just did not feel that it was a good time to start nursing school, so I finally emailed my counselor and told her to push me off until the fall of 2011 because of the complications. I feel good about this decision because it will give be more time to get back to normal and do things that I would have never been able to do.
Well I just celebrated my 23rd birthday! I have to thank God and my donor for letting me be with my family for another year.
The next part not everyone may agree with or want to read, but my blog is about an honest account of what it is like to have a heart transplant.
On my birthday, the one present I really wanted was to not have to take my 3 sets of many pills. The day was kind of a hard day because for many days before and after I was not feeling well and by that day I felt like I should just get to be a Princess and not have to take my meds, but I still did. I have never missed a dosage of my medications, but I still have a love hate relationship with them. I love them because they keep me alive (thank you Norm Shumway for realizing cyclosporine prevented rejection!) but I hate them because they can make me feel sick (I must take them with food), I hate the taste and smell of them and I hate sorting through them knowing that I must take them-this is part of my rebellious nature. But I am back to feeling "normal" being back on the myfortic.
So for my first post of 2011 I am posting my resolution and that is to just keep on with what I did with 2010-be thankful for my new life and don't hold back! Go out, have fun, do stuff! Volunteer with CTDN so all the people I know waiting for their transplants can get a chance at their new lives!

Last Entry of 2010

12/31/2010-Last Entry of 2010!
I have to sneak in one last entry of 2010! This has been one amazing year! A lot of hard work, many, many struggles, a lot of learning, changes, going out of my comfort zone, getting many opportunities and experiences that most people don't normally get, and a full year with someone else's heart!
Heart/Health wise this year started off really tough and it did not turn around utill the last few months. I had bad rejection many times and was on prednisone tapers that were anywhere from 1000 mg of Prednisone/Solumedrole to 100mg of Predrisone to being off for 3 weeks (and I finally got my face back! but now I am back on the prednisone so it is gone again). But I was so lucky that I did not have the antibody rejection and have to stay in the hospital, the worst I had was having to go in 3 days in a row for IV medication.
I am also so fortunate that this heart feel so strong! It honestly feels....undescribable...I don't know if everyone is walking around with hearts feeling like this, but you if you are, you are some lucky ducks. Even on my worst days, when the medication makes my heart feel so weird and the beats are off, or the rejection was bad, I still feel way better than when I was 5 years old-before there could have been that much damage to my heart. I said this to someone before, it just feel so good, so natural with this new heart. To not have to have something mechanically keeping your heart going (like a pacemaker, LVAD, ICD, etc.) the mechanical stuff is great for an emergency, but it is not the same as a real heart. It is not great for people who are still highly active and/or will need the mechanical support for long-term use.
I am finally used to the right heart caths! You can poke me in the jugular as much as you want! I am getting used to the nausea, sort of. I changed one (of my 3) antirejection meds to from myfortic to rapamune (because my biopsy showed mild rejection/inflammation. I am not liking the rappamune, it has done a number on me and I am hoping I can go off of it at this next appointment. So far my headaches have gradually returned, I am short of breath, by blood pressure is high (normally it is perfect and I don't even have to take anything to lower it! I am so lucky!) and I am still nauseous, and I don't know if the acid reflux is worse all the sudden or it has been bad for a while and I have just not been paying attention (the antirejection meds really rip up your stomach so you are put on 2 antacids). But yet all this was not enough for me to call the doctors office early and get a sooner appointment or get try to get off the meds.
It is just starting to hit me-13 1/2 months later, that this is not really my heart. I got this heart because poor person died. I know I could not have prevented their death, and my illness had no correlation to their death, but it has just started hitting me that this could have been one of my family members (or myself) who got in a fatal accident and died (it happens everyday). I think I came to this conclusion with all of the excitement over the float in the Rose Bowel Parade and seeing all of the donors florographs-it put a "face" on the donors (like how being a volunteer with CTDN and talking about my transplant I am trying to put a "face" on transplants, it was just one of those moments), so many of the donors are so young, like my age, you just don't expect people to die young. But it also makes me remember that I have to live for my donor and their family, and the life I was given will not be in vain.
I have gotten so many experiences that I (probably) would not have been able to do/been given if I was in school/working/did not get the heart transplant. I got to travel and live with my sister and cousin-away from my parents. That was sooooooo cool! I grew a lot closer to my sister, we had a lot of fun, and learned about how to rent a house and set it all up-without any help from our parents!
I have gotten many speaking opportunities, many volunteer opportunities with CTDN, and a internship with a nurse educator. At all of the place I learn so much-and hopefully I am again putting a face on transplant. These opportunities I would not have been given without the transplant or if I was in school and they have been so cool.
One thing I have tried to do this year and will try to do in 2011 is be a support person for the younger people that need a transplant. I did not know anyone young that had a transplant, it wasn't until 6 months out that I met some friendly transplant people at TRIO, but it wasn't until I went and talked to another young person in the hospital that I met someone closer to my age that had/needed a transplant. The reason this makes a difference is so many of the people that are transplanted at my hospital were near retirement when they got their transplant, so they just retired. I am just starting my life and I still need to go back to school, so there are a whole different set of issues with me and it is nice to talk with other people my age to see if they are struggling with the same things. But for me I definitely had to step out of my comfort zone to even go to groups like TRIO, much less talk to people my age about transplants, but I think that this was is such a pertinent part of the transplant process for someone waiting, that one of my goals (and if you are the prayerful type-you can pray for this) is to keep stepping out of my comfort zone and talking with transplant people.

12/21/10 Medical Catch Up

The above picture is me and Heidi and her 3 year old daughter Ashley(who I FINALLY got to meet! (because of the whole no kids in hospitals thing last year because of the flu)-she is sooo cute, now I see why Heidi missed her soo much) Heidi and I got hearts (she got a kidney too!) on the same exact day and shared a room in the North ICU at Stanford (she was a great room mate and has been my one room mate ever at the hospital!) and she was in the room next to mine for a few days at Santa Clara before transplant. She looks so good, I did not recognise her, she is doing so well. I think this will have to be an annual event (taking the pic of us). This was at the heart transplant Christmas party which had 300 people and it was so packed it ran out of food. It was so much fun and so good to see transplant friends and get updates. Time went so fast I did not get to talk to everyone I wanted to or for as long as I wanted to. Again, Dr. Weisshaar made a touching speech that I will try to write about in another post (but I never got to last year!).
So, I still have not finished my post about my Thanksgiving (which I had a life changing story :)! )and just a ton of other events that actually have to do with my transplant (like I spoke in front of about 250-300 people, and I rode 20 miles!) and I have started other posts, but I have just not finished them. So today I am just going to get caught up with what is happening medical-wise because it was somewhat of a change.
So I had my annual check over November 30-December 1 (It is a 2 day process filled with that must be done on a Tuesday and Wednesday because Monday you have to have new blood tests, Tuesday you must get an EKG, Chest X-Ray, Echocardiogram, and a physical (and go over your whole cardiac history with your new heart (it took for just the clinic visit took from about 1-5). It was basically saying goodbye to my old heart, and going over what has gone on with this new one (which is actually alot, when it is supposed to just be a normal heart like everyone elses). So Au revoir my 1st heart-I think we all need one last picture



Don't I have the creepiest look on my face, lol

When I came in to the clinic I also got a letter from my donor's sister (but that is another post) (IS ANYONE GOING TO BE AT THE ROSEBOWEL OR KNOW ANYONE WHO WILL BE THERE-and will see the floats before hand and can put/take a picture of the rose I am going to dedicate to my donor please email me asap) the donors sister really wants to meet, which is surprising because it just seems so soon, like her two letters do not seem like she has not gotten over her brothers death, and usually when you hear of people meeting with their donor family it is after years-but again this is a whole nother post, and I would like to share my letters with everyone because everyone who has read this has been so supportive of me and my recovery and inturn part on meeting the family.
So, we came back the next day (usually for heart transplants caths are done on Tuesdays (which are just biopsies to check for rejection), but because this is an annual (which is a right and left heart cath) and they take soooooo long (like an hour) they do them on Wednesdays. (They take biopsies, check the pressures, and make sure the arteries and veins look good in the transplanted heart) My heart looked pretty good except that it was a little stiff (which at first I thought might mean that I was getting Restrictive Cardiomyopathy (which is kind of like a stiff heart and you get it from a virus, congenitally, or from a heart transplant), which I freaked out for about an hour, but then the doctor came back and I asked her and she thinks that it could be from the rejections I have had, or that I was in an episode of rejection. But my arteries looked great! (which is usually a big problem post transplant and even if you have great cholesterol (which I do!) you still have to take a statin because your blood against the donor arteries and veins causes hyperlipidemia).
The actual process of the left heart cath went ok, much better thank at Lucille Packard Childrens Hospital (LPCH-Stanford Children's Hospital). As soon as I felt the littlest bit of pain Dr. Weisshaar gave me some more Lidocane, so it wasn't too bad. The worst part was she pressed on my bladder for like 30 min with a sonogram to look at my artery and vein (which eventually made me have to pee) and the laying on the table and laying in a gurney after for 4 hours in recovery so that my artery would clot. So, back to my bladder.
So, the biopsy came back 1R/2A and my allomap came back 33 (when the cut off for my doctors is 34 so technically I would have been fine which somewhat scares me and makes me not trues Allomap even more), which means that I have inflammation. If everything had come back ok, I was not going to have to go to the clinic for 4 months!, but since I had this result of inflammation, I had to go back in a month and have a biopsy. I went back on prednison, but just to 5 mg, I did not have to do the whole prednisone taper and I changed my myfortic, which I was taking 720 Mg 2X a day, to Rappamune, which I started off at 1 mg and then had blood work to see my levels and now take 2 mg and will stay there. Even if I was not having the inflammation issues we were thinking about switching to the Rappamune because of my nausea, but now I think I just have a different type of nausea (this may be TMI, but now I am just sort of like throwing up in my mouth), but it has many positive benefits like it is better on your kidneys and it is better for not getting skin cancer. I was really scared to try this because the doctor freaked me out because she said that this could cause permanent lung scaring and (before we knew about the inflammation) I said I was not going to switch because I did not think it was worth the risk, but then it was no longer a choice and so far, so good! So I think I have tried every kind of anti-rejection med but neroral (which is another kind of cyclosporine).
I praise the Lord that I only have to have this left heart cath on the odd years, I hate them! But I have heard that the dobutamone stress echoes are also not that great. For me the whole issue with the left heart cath was the horror I had at LPCH, I think the cardiac surgeon actually cut my femoral artery when he put in the cath because I had a HUGE whole and massive bruise and it was sooooo painful I screamed and they did not use lidiocane or anything to calm me down. After I had this last cath, even though it went so well, I just got so emotional when I saw my mom, I started crying. I think it will take a few times of the left heart cath (and getting used to it going well) before I can get it in my head that it can go well-that surgeon left me with some emotional scaring.
One last story to leave you with. My pain doctor, who I have told I can not take NSAID's prescribed me an NSAID, but I did not know it was an NSAID. Before I took it, I called the transplant clinic to make sure I could take it. The nurse checked with a doctor (which took forever-and of course it was the 1 doctor I can't stand and always screw up) and the doctor gave it the clear to take it. So I take it around 5 pm. Before bed I go through and start reading all those papers that you get with your meds (I always do with my new meds) and I read that it is an NSAID. So I freak out and call my mom to see if I need to call the on call transplant cardiologist, she thought if it had been this long things should be ok, so I waited until the next day. I called the same doctor back and told her it was an NSAID (which I guess she did not realize) and she told me I could not take it. I was origionally told that 1 Advil would shut down my Kidneys from a reaction with my antirejection meds, so I am a little nervous.

After the whole annual me and mom ran down to Carmel and had a very nice day and a nice lunch at the forge in the forrest.





12/21/10 Medical catch up.