T'was the Night of Christmas

12/25/10 T'was the Night of Christmas
Today and last night was PERFECT! I got to spend another year with my family (except my father, who has the flu so he is in quarantine :) and except for my father having the flu, I got all of the presents I want-to just be with my family. I honestly don't mean this to sound cheezy, and I know most people will not understand this because they have not had to really think about the thought about their death, but right after I had the heart transplant last year was the holidays and then my birthday and I did not really want any presents. I just thought that this was because I was too tired to think about that sort of thing, but I feel the same way about it this year. I would much rather have all my health-like have no rejection, have the back pain go away, get my memory back, etc. and be able to be here and with my family (and conscious) than any present that could have been bought.
So here is the run down of Christmas Eve and Day:
I was late for dinner to the Christmas eve party because I was running around and wore out too quick, I fell asleep before I left for the party and was awakened to my cell phone of my grandmother calling me to tell me dinner was being started. By the time I got there all the food was gone! But I had mashed potatoes, which were yummy!
This year instead of presents for Christmas eve my family did white elephant gifts, which was a lot less stressful than getting a gift (or gifts) for someone. And it was so funny watching people opening them. And they were really fun to buy.
Nothing too exciting about Christmas morning. My whole family went to my grandmothers house and had breakfast and then just the cousins did a secret Santa exchange. Then we sat around and talked for a few hours. I have had alot of fun getting to know my cousins girlfriend Anni lately, she is really sweet, and I got to talk to her a lot to day-too bad she is going away to nursing school in Napa for 2 years. Then the cousins and aunts and uncles had to go and just my family stayed and had hours de jour and a family friend came over and my grandmother made veggie soup (from scratch). My mom, sisters, and I opened gifts.
Last year I was too tired to really think about my donors family. But this year, now that I have been in contact with Olga, my donor sister, I just can not imagine being in her situation. From how it has sounded from her letters, she does not have a family and raised Ruben (donor, her brother). So she is alone for the holidays. What even complicates the situation more is that she speaks Spanish and I speak English. I hope she realizes the greatness that she has done with her act and the impact that she has had on my life and that it is because of her that I am getting to spend this Christmas with my family. I am still thinking about the if/how/where/when/etc. of meeting Olga, who wants to meet me-which I know sounds really selfish-I know I should be the person pushing her to meet me (and not the other way around) but I just did not think that it would happen so quick and I do not want her to think that I am a replacement for Ruben. I still do not think that she has gotten over his death.
The last two years my cousins has made me a special ornament for our Christmas tree. I feel like this is a special way of honoring Ruben in our close knit family.
So my family likes to get me funny heart shirts and here is my the ones I got for Christmas:
This one is actually a campaign for Pearl Izumi (a cycling company), my Dad got it for me


After I got the shirt and he told the guy at the check out why he was buying it for me (that I had had a heart transplant) the guy gave me this sticker, I am not sure it really fits my situation.


Jackie got me the following.
Jen (my cousin) drew the tin man in this one, and Jackie designed this, I think I am trying going to try to sell these shirts to raise money for my Team in Training ride.

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.

One Year Heart Transplant Anniversary!

So on with the saga of what has been going on in life:
The next day on my way to small group I got a text message from Audrey, AJ's sister. AJ is a patient I met a few weeks ago and was just listed for a heart transplant, I went and talked to him about my transplant experience. It was really nice to meet him and connect him because we were so close in age and that is hard to find. He is 25 years old and his sister just graduated from the same nursing school my sister graduated from-one year later. AJ is also looking to go to nursing school, we had very similar stories. Anyways-back to the text message-AJ GOT HIS HEART-exactly 1 year after I got my heart! Isn't that kind of weird? I told his sister we were heart transplant twins. I think he is getting out of the hospital on Monday (today) and is hoping to be at the Christmas party where I hope to see him and get an update.
After small group I back home to CLEAN/organize my room for my party. My family was having a party for my one year anniversary of my heart transplant and all that I have accomplished in one year with everything that has gone on.
The party was so much fun. I got to pick the menu, which was all carbs-cheeze spaghetti, Eileens cheese bread, salad, and strawberries. And for dessert Fentons ice cream. I wasn't expecting any presents because my family had already gotten me my bike:




a few months ago, but I got: a scarf from Beijing and perfume from Paris, cards, a book of quotes (they were funny quotes for days when you need a pick me up) and a bunch a stuff for my bike from my dad and gift certificates to the bike shop that I bought my bike from and that I am thinking about buying another bike from (I am thinking about doing a ride over two days from Seattle to Portland). It was so much fun to spend the night with my family and best friend and I am so thankful that I have them there to support me through this whole experience-without then it would be very difficult.

Giving Back

So I have had many mile stones and I wanted to write them out so hopefully they will get out over a few small posts. Here is the first one of the day before my one year heart transplant anniversary.
I guess it is good that I have been too busy to write about my one year heart transplant anniversary, but I really want to write about it before I forget about it. On Friday, November 19 I donated blood for the first time. Since I was by myself I don't have a picture, but here is a picture of the sticker I got:




I wanted to donate blood because it was one of the things that I was donated to me that I could finally give back. I was given many, many units of blood during and after my surgery-something like 9 units, so I feel like I need to replenish the supply. One bag of donation can save 3 lives. I took awhile to get through the screening process, but it only took me 4 minutes to fill the bag-because I have such a strong heart!
I thought about writing about what happened this day a year ago, but maybe in a few months.