04/06/2011 3.5 Hours of Neuro testing!!! Don’t they understand I’m seeing them BECAUSE my brain is fried!

04/06/2011 3.5 Hours of Neuro testing!!! Don’t they understand I’m seeing them BECAUSE my being is fried!

So the point of this blog is not to just talk about my boring everyday life, but to talk about my transplant life and what is going on with it, it may seem mundane and boring, but I think I get to do a lot of things that I would have never have done without the transplant.
So today started out with my mom taking me to by friend Kara’s house because I left my HUGE purse in her car last night (which included my driver’s license, debit card, and health card). This was just more proof that I needed to get tested by the neuropsychologist-which I went to next. Basically, a neuropsychologist tests how you think through many different kinds of testing (like reading back numbers in an order, doing math in your head, using building blocking to make a shape, draw abstract ideas, etc.). When I first got there they had me fill out a 16 page survey before I even met with the neuropsychologist, 16 pages!!! It asked everything from if my mother had a normal pregnancy to if I had migraines. And then came the 3.5 hours of testing.
I won’t get the results for a few weeks, but they are supposed to be able to be used as a tool to help with my learning and going and back to school so I am excited to get the results.
After I picked up some “goodies”…some Gabapentin…from the pharmacy (it’s for the nerve damage the was caused during my surgery and is in my hands and feet), but even though I did not have to wait in line for it and had to order a TONE (the tech could not believe I was getting that much) I did not have to wait more than a minute! So they were goodies-especially since have been out for 3 days and I am getting SORE!

PR SATURDAY!!!!!

04/05/2011
Last week some major milestones happened. On Saturday I biked 50 miles!!! Would have never thought I would be able to do that. I would have never thought that I would be healthy enough to bike that far and that hard, and unless Lance Armstrong is telling you he did it, biking 50 miles is pretty hard to do. The total miles for this week were over 120 miles!!!

Earlier this week I also had a MAJOR spill on my bike and I think I cracked the top layer of my sternum. They doctors are not sure what is going on with it and have done numerous tests, but the bottom is still held together, but there is definitely a hole in my sternum going the length.
I had my first 3 month follow up with the heart transplant clinic; this is the first time I have been able to stay away from them for more than a month! I have always felt sick in a month and felt that uh-oh feeling that I just needed a checkup, but this quarter I told myself there was no way I was going to go in with in the three months, and I made it! And I got a 23 (on a scoring range of 0-34, but anything under a 34 is good) on my Allomap, this is the lowest that I have ever gotten!
Natalie a lung transplant patient and transplant buddy passed away this Tuesday afternoon. She was 33 years old and was an amazing person. She graduated from college while undergoing chemo for non-Hodgkin’s lymphoma, the effects of the treatment ultimately cost her, her lungs and then her life, but she always lived her life to the fullest and was such a sweet girl and was one of my first recipient friends I made at the donor network while we volunteering at many events.
Even since my many notes that I wrote to my donor family in December I have been meaning to write again and just get an update. When I came into the clinic my social worker gave me a note from my donor’s family! It had a picture of my donor, Ruben, his older daughter (who is 9 years old and the mother of his children) (he also has a 2 year old daughter) and another picture with his mother and his 2 brothers and 3 sisters. I also found out Ruben was 36 years old when he passed. It was somewhat hard to get the letter because without the letter I could always think of him as a single being (without a family, children, etc.) but now that I see that he a regular person and I could relate being a donor to someone I know, which is a great but scary gift. Rubens final resting place is in Colima, Mexico where his parents live. His sister (who was his next of kin) is still in Fresno, and she would like to meet with me but I am not sure about his daughters or other family members.

Exciting News

My friend Jonathan is getting his heart transplant tonight-Valentines day-how fitting! He was in the hospital over christmas on IV milrinone, but because he does not have an ICD he could not go home. Then he though he could stay off the milrinone for awhile, so he went home, but was a status 2, for about a month! He had to go back to the hospital last Friday to go back on the Milrinone. Then the gave him the IV pump like I had and a life vest (like I was going to get) and let him go home for 1 day for his younger brothers birthday. Jonathan is 17 years old and I meet him at my heart transplant support group when he was an inpatient and trying to entertain him on facebook on chat-I have not talked on that since highschool, he made me sign onto that lol!. Although we are a few year apart, we have a lot of sililarities! He is supposed to be in his senior year of high school, but is having to take the year off to get a heart transplant. Amazingly he is taking it in stride! I am having to do the same thing with college.
I have been talking with Jonathan and for so long about the transplant, I am so excited for him tonight and I can't sleep!-It's midnight! I am remembering what my transplant was like, how I was feeling, what the afternoon, evening, night went.

I feel like my blog is naked! I haven't taken any pictures in FOREVER and I have nothing to put on here!

So it has been 14 months since my heart transpant. I am now ready and able to start doing things that I was not able to do before my heart transplant. I have found that Leukemia/Lymphoma Society (LLS) can help me do this and allow me to give something back in return. In the last year I have been in and out of the hospital and have seen many different things. I had the unique and very difficult experience of going to the department where cancer patients were being given chemo. This experience has only added to the connection I feel to LLS. That is why I have joined Team in Training (the fundraising arm of LLS). They will prepare me to ride my bike for 100 miles around beautiful Lake Tahoe, in one day!
Since its inception the Leukemia and Lymphoma Society has raised over a billion dollars. This has made a huge difference in the survival rates of blood cancer patients. Not only does the money raised go towards research, but it also goes towards patient services. Because of the support that I received during my recovery, I have realized just how important this aspect is for patients with blood cancers.
The financial commitment that I have made is $3,500. Please visit my website, at: http://pages.teamintraining.org/sf/ambbr11/aweese to donate directly to LLS via credit card and to get updates on my progress. Donations can be made by check to the Leukemia Society. And of course, your donation is tax deductible. If you would like to make a donation and are able, it would be greatly appreciated if it could be made by Monday, March 14, 2011.

02/09/2011 Not a ZERO-But Happy With What I have!

So, in January I went off Prednisone-for good-finally! A year late-but defiantly worth the wait! I thought I was rejection/having more problems with restriction in my heart like I had in December went I went off the Pred., so I had an "emergency" heart biopsy for the next morning, but it showed up with the same results I have when I take my small maintenance dose (5 mg) of Prednisone (I got a 1R/1R-so still rejection). This was finally the good news I have been waiting a year for. I was supposed to come off the Prednisone last January, but because of my rejections and inflammation issues I had to go on many tapering's of it. I don't have to go back to the transplant offices until March/April and I don't have to have another biopsy until November (or unless the Allomap gives faulty results-I am not a fan of Allomap-it is a relatively new test and is still working out its kinks and I never get good results. But, hopefully since I am off the prednisone I will start getting better Allomap results).
A few weeks after the biopsy I started feeling better-it takes awhile for me to feel better after getting tapered off the prednisone-it is pretty hard on your body. I started riding my bike more, and I signed up for Team in Training to ride 100 miles in June!-a century ride! I am getting to do something that I have always wanted to do and something that most people don't have time to do. I am loving cycling and exercising! I got into cycling because it was the only exercise that was not hurting my back (laying on my back for hours during and after surgery hurt my back), but I was finally able to get a shot in my spine and it HELPED! so, I am able to do more walking an do different excercising.
I am working in speech therapy on my memory and hopefully that will help me. I don't know about it so far, but the brain is elastic so I am trying to work it out more and hopefully it will come back soon. I am taking one class this semester just as practice for next semester at SMU.
It is getting exciting to a.) be getting healthier, and b.) getting used to everything and just get into my routine and c.) being able to move on with life! I am getting more used to everything transplant related (like meds causing me to be nauseous, the pain in my legs, my migraines, and my memory). I haven't updated this in so long because I have been so busy and I am filling up my days again!

Hilly Road Ahead

01/18/2011-A Hilly Road Ahead
The morning started off waking up at 7:00 am-I have not woken up at that time for quite a while and it was pretty difficult to do, but I am trying to make new habits and going to bed earlier and waking up earlier is one of them.
So by 9:30 am-I met my Auntie and Uncle (who are brother and sister to my mom) in the parking lot of a closed down Mervyn's) with my "Auntie" Meena to go for my first real (non trail) road bike ride. It was good-mildly hilly, but not awful. I did not have to stop on any hills and walk up them-and I did not have to shift to first gear at any of them. It was a total of 11 miles, which was pretty good for my first day out. We were going to make it a little longer, but the next signal is REALLY busy, so we turned around a signal early and that took off about a mile or maybe 2.
Some of those hills looked so hard to do and that I could not do them, but once I was on them, I could not stop and just got through them. I sort of surprised myself that I did so many, and such steep hills. The other day I tried to do one hill and I could not do it. I think it has a lot to do with warming up my heart. During surgery the nerves to my heart were cut so I have no autonomic nervous system (ANS) the system which tells you to fight or flight. So this means I have to warm up, this can take a good 5 minutes or more. I think it also helped that my Auntie was there and she would not take it if I walked up the hill.
So I have a new exciting work out schedule-I am training-which is a total surprise, but I will tell you all later. It is mostly an exciting because it is with family, and possibly with one of my best friends!
So-to the medical stuff-at first I typed studd-I wish there was a medical studd-preferably a Dr., but I would take a RN.
So my Immune Cell Function Test (this shows how well I am immunosuppressed, it is bad to be to under suppressed-you will always get sick (like with colds) and are more prone to cancer and other things) or over suppressed-your body will be fighting off the organ) from a few weeks ago came back not good, and they gave me the choice to either up my Myfortic or my Gengraf (I was smart and choose the Gengraf) so the doctor upped my Gengraf a very little bit (it has bad side effects (I choose Myfortic over Gengraf because I think Myfortic makes me feel worse than Gengraf and I don't think I could tolerate anymore Myfortic). So a week later I took the test again and it ends up that I was the smart one and choose the right drug because after taking a break from the Myfortic in December (to go on Rappamune to see if that would help with the nausea and end the chronic rejection-which it did not-it made me sicker because it depleted my potassium and magnesium) my drug level test showed that my body is not absorbing my Myfortic (which is pretty serious-since I tapered off prednisone and was off of it-so I was only on 1 anti-rejection drug, all transplant centers require 2 drugs, some 3). Actually the nurse said either you arn't taking myfortic or your body isn't absorbing it, and I immediately started promising her that I take it ever day as prescribed. So we decided that I am not absorbing it. So I am running out of anti-rejection drugs that work. I got them to give me the name brand of cellcept-I have to make sure that I only have to pay my small copay and not a gillion dollars because I can not take the generic-I thought it was going to kill me.
Anti-rejection meds that work: gengraf, name brand cellcept, rapamune (but would be a last resort)
Anti-rejection meds that don't work=prograft (can't see when I take this), generic cellcept, myfortic
And this is all kaiser is giving out anymore, I have heard of neoral, and Imuran, but Kaiser did not offer it to me. So let's all pray that my ICF will get better (and I will still feel ok) with the cellcept (I haven't taken it in a year).
On a funny side note-I called the transplant coordinator at 4 because I knew my lab results should be back by then, but she still had not talked to the Dr. about them, so she had to call me back. Well I was out running errands and I though it was going to just be a few minutes more, so I waited in the parking lot....for 40 minutes. And then I finally left. And of course 5 minutes later she called me and told me about the med change and wanted me to run out and get the new meds. In my head I though: "So, basically I have only been taking 1 anti-rejection medication for a month, what is one more day, I will go out tomorrow after rush hour,".

Pump Head

01/09/2011 Pump Head
So I guess I have been in a writing mood lately because I think this is the third day in a row that I have written, usually I start out reading friends blogs and commenting, but lately I have been riding a lot-and when I ride I get lots of deep thoughts and this is sort of the therapy.
So from the heart transplant surgery I got developed this condition (that will go away over time) called pump head-that's it's real name-you can look it up on wikipedia, isn't it such a vulgar name? Basically what it is, is memory loss-of different kinds (short and long term) caused by the surgery-when I was on the heart lung machine. There are many theories what actually goes wrong with the pump, one of the things is that your red blood cells are crushed when they go through the pump and are ruined-but there are many other theories.
Anyways-I am talking about this for a reason. For awhile I have noticed that it is so weird the things I actually am remembering/remember. I have forgotten many things from my long term memory, it somewhat feels like I have a slight amnesia-I know the basic things like my name, family, etc. But some things that I expect myself to remember I am not remembering. They kind of catch me off guard because I just don't expect it and I am always surprised.
I have gone to church for my whole life and this morning we were singing songs in church that I have sang my whole life, but I could not remember the words, I had to read them from the screen. It was it kind of made me all the sudden evaluate my life and what I really value. I am having no problem telling people about medical crap-sorry, but I can real off a whole load of stuff, it took me 2 days to remember 20 medications I had never heard of (the dosage, why I took them, and when I took them, etc.) (and I am not just talking about knowing medications-I am a nursing student so just knowing about general stuff going on) but I totally am forgetting verses that I have always known-I just draw a blank.
I know it is important to know about my health, but it made me think that I also need to put a lot more time in reading the word. It is so weird how it took this pump head to figure this out.

This is the stuff they don't tell you about

02/08/2011 This is the stuff they don't tell you about!
So I was watching this cheezy movie about heart transplant patients; yes I must watch and read all books about heart transplants, fiction or non-fiction to either learn more or to see how close they really capture what it is like to have a heart transplant.
After one of the characters got their heart transplant, they were speaking to a fellow heart transplantee about just how great they felt-"You know, the stuff they don't tell you about". I have been thinking about writing this for an hour now, and now I can't put it into words, but after my great night I can totally relate to this character.
The stuff that they did not tell me about was how all the sudden I would be more out going and willing to try more things. I have done more things with friends, gone out with friends of friends, and tonight I went to a friends work party as her "date". I think in a way the transplant has given me some sort of confidence because I would have never done these things before.
The night was amazing! I got to meet some really cool people, a Chief or Surgery for UCSF, SF Judge, and many Lawyers, and some guy tried to pick up on me-this was the first time since transplant (I inadvertently covered my scar with a scarf-people ALWAYS stare at my scare when I talk to them- so I don't know if that made me more approachable). but I turned him down-he smoked and had a tattoo on his neck :(. I am so glad I went, it was just such a cool adventure.
Today was Katies winter ball and I woke up early (10 am) and ran out to the craft store and bought peacock feathers and made her a headpiece. I think it actually looks really cool and really good. It really got my creative juices flowing in another way. I love how lately I have been back into doing art-for fun. I get inspirations from watching movies or just looking at materials I think of something amazing I would like to make.
I love Katies dress that we picked out about 5 days before the dance. I will have to post pictures later. Last year she was very formal, this year she was very fun.
I got to do her hair fun, and touch-up her highlights which turned out amazing looking-he hair was looking to blond.
And finally, Jackie always does her make-up, but she is away, so she asked me to do it. And I though I could do a fine job, but that it would just look like everyday make-up since that is the sort of make-up that I do, but then my creative juices started flowing and I blended the colors of her eye shadows to make it look like a peacock-to keep with the theme. Even my grandmother and mom liked it! Their only complaint-and my grandfather was very pissed about this was that the dress was pretty short-but you gotta have fun!
So we both had a great night! This is what the doctors don't tell you about!

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.

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.

11/15/10 Survival Mode

11/15/10-Survival Mode
I am not sure if I have written on this topic before, but even so, more thoughts came up about it when I was at a TRIO meeting last Thursday. One person there needs a transplant, but they are nervous of the surgery (which everyone is-who isn't scared of any surgery? but for anyone out there waiting for a transplant, all I can say is it was not as bad as I though it was going to be) and they don't like to take medicine (I will get to this later in the post-but I feel for them here also).
Before I got my heart transplant I steadily took more and more medication starting the January before the transplant (January 2009). From January to July I did not really feel like I HAD to take every dose. Then in July I HAD to take more medications and to function I HAD to take every dose, but I guess because of my age and my rebellious nature, every once in awhile I skipped a dose. When I skipped one of these doses I felt awful, at this point I was taking anti-arrhythmics, diuretics, K+, etc. I think though it was good to get to go through this experimental phase then because now I know how quickly I will feel sick if I miss just one dose. Before the transplant I NEVER took liquid medication, no one told me that I would have to take liquid medication after the transplant for awhile, so it was quite a surprise to me when I was given it in the hospital right after transplant. At first I almost said that I could not take it, but I decided before I made a fuss, I would at least try and take it, and I was able to take the medication. This is when I think my body was in "survival mode", I was able to do things that I would not normally be able to do, like have multiple IV's put in, and other painful things. I think at this point after surgery my body was doing anything it needed to survive and I think this mode lasted for many months after. It was a hard few months after the transplant also, the first few weeks when the tweaked my meds and I had to have a cath every week (my neck was sooooo sore) were really hard. Fore many months the all of the medications made me sick and my back was a mess. But eventually life has gotten much better and in a few days I will be 1 year out and I think I am out of this survival mode and into a more normal life mode. Now it is easy to take all of these medications. Someone was asking me yesterday how many pills I take a day, and I told them it was about 50 total (some are more than one of the same pill) and they were shocked, before transplant I would be shocked, but now I don't think my medication regimen is that bad, I am pretty used to it.
In heart news:
One of the nice things about transplant is that you have gone through all of this pain, so after you can go through nearly any painful thing. One doctor told me that an injection in my back was going to be pretty painful-I honestly did not notice it. I had to get things burned off my skin and the doctor told me to tell her when I could not handle the burning any more-it really never bothered me, I just wanted the stuff off and the procedure done so I just told the doctor to finish it so I did not have to do this again. After she said that usually people tell her to stop as soon as she starts. After getting a heart cath and a heart biopsy I feel like I could withstand just about anything.
I went off Prednisone-for the 2nd (and hopefully last) time (on Saturday Nov 13-a day to be marked in my Tx history)! I am having a biopsy on the 1st to make sure everything is ok, except for being tired (which is expected) I feel fine, no irregular heart beats, so I think all is well and I am done with Prednisone for awhile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

11/6/10-"I Don't Buy Green Banana's?"

11/6/10-"I Don't Buy Green Banana's?"
I think that the only people that like the songs that make you appreciate your life by talking about the singers impending death are people who are not sick, people who will never be sick, people who are perfectly healthy. People who are sick, people who might not make it until they are 40, or people who have lead "different" lives because of an illness detest them. Do I honestly need to be reminded to live like I was dying, or that I might not get to eat the produce that I just bought?
At lot of this comes because Dr. K, against the wishes of other members of the team (but for very good reasons) decided to lower my prednisone by half-hopefully to get me off of it eventually. Last time I did this I was in Texas, rejected, went to the ED and made and emergency flight home. I know everything will be fine and I have always pulled out of the rejection, even if it does take some IV solumedrol, but I don't like what it does for the long term effects/damage of my heart. Will this episode of rejection not make this heart last as long?
I do not need these songs because I appreciate the life that was given to me and I always will. I know that a lot of transplant patients say that once they get back to their normal life, they forget to live like they had a second chance. I know it is easy to say that that would never happen to me, but I am certain it will not. I have too many reminders everyday of what my life was, taking my medication everyday, going to clinic visits, getting dreaded biopsies, etc. For so long I was too exhausted to do ANYTHING and was just pushing through life, now I am actually getting to enjoy life, and I get to see the difference!

The songs I am refering to are Tim McGraw's-Live Like You Were Dying and some other guy's I Don't Buy Green Banana's

10/31/10 Back to School

10/31/10 Back to School
So I am taking a class for Jackie so she has units, but she doesn't have time to take it. I picked a class that I had taken before, that was easy, that I had gotten a PERFECT score in, and that I thought would be a breeze (International Business-just in case you were wondering). My brain is just starting to get the wheels going, but it is really hard to get the rust off. It feels good to get into the groove of things again, I have never known anything besides being in school-that has been my career for almost 20 years and the thought of being able to go being able to go back to school next semester is really exciting. Even though this class is busy work, I actually started to enjoy it because it was just nice to be back in the educational setting. It was so weird because I have not necessarily forgotten so much, but I lost it from my memory-it somewhat feels like an amnesia that I am rebuilding. Some of this information feels familiar, but some of it I am having to re-learn.
So anyways, here is my little set up, where I saved up all of my (Jackie's) homework for the week (because my textbook did not come until Saturday) and I worked for 4 hours straight, and I did the extra credit (but I don't know if I did it right-but I always attempt extra credit!).

And I have to say I wrote this and spell checked it and it said there were no misspellings-wow, I think that is progress people!

10/30/10 Accomplishments

10/30/10 Accomplishments
I like to think that my (so far short) life has been marked by my accomplishments, that is one of the reasons why this year has been so emotionally hard on me and besides getting up every morning, (which believe me, some mornings was a feat) I did not accomplish very much.
But when I have ran into people I have not seen in awhile and they ask what I have done I love to tell them that I have gotten a heart transplant. It kind of shocks them because it is such a rare thing to get done, and people act like I did something good. I don't get why, I think they are just sort of shocked.
They say: "Oh, I graduated from UC Berkeley and I am going to Stanford for Med school, what are you doing?" And I can say (without batting an eye): "In November I got a heart transplant," and they almost fall over. They think they have "one-upped" me with the whole Berkeley-Stanford thing, and then they hear my story and they did not even know what was coming.
Oh, and I would like to point out that this time last year I was a permanent resident in the hospital until January, and I have not been back since (to live there) and it feels good! But everyday I go through the emotions and the major events of what happened the days of my illness. Jackie, my sister, who has a big, hot shot job, is going to buy me a present for staying out of the hospital for a year :)

The picture is of a giant cupcake that Jen made and I made the icing for (but did not eat).

10/19/10 Practicing Life After Transplant

So I am long overdue for an update. Life has been really busy, I have just been really looking forward to getting to Texas-to see my sister, volunteering, being with family, and just the everyday heckticness of life. I am almost exactly one month away from being a year out!!!!
I must start out with a hilarious incident that happened when I was volunteering with the California Transplant Donor Network doing grand rounds with the pediatricians the day before I left for Texas. Right after transplant I used to always wear clothes that covered my scar, but they don't make clothes for women like that, so I scrapped that idea and have just gone back to dressing normally. At the end of the presentation people always come up and talk to me. I was wearing a V-Neck shirt and everyone that talked to me stared directly at my scar! I expect this in the normal public, but not really from doctors who see scars everyday. So later that day I was talking to my sister on the phone and she said that next time that happens to ask the person if they have a question. Well the last person I talked to was the 80 year old Chaplin-I don't think in the 10 minute conversation I had that they looked at my face once! It does not bother me at all, I just think it is too funny!
I feel like I still have so much to write about my transplant life, but yet it is so hard to pinpoint what I want to write about. Earlier today I started to write just a general update, but it just felt so generic that I stopped. Later in the day I was writing an email to a heart/kidney transplant friend (Hi Bob-http://www.txtrib.blogspot.com/) and I finally thought up a good-original blog, its sort of a two-fold subject.
Originally when I went to Texas with my sister in the end of May, we were planning that I would move down here with her and I would come back home every so often to go to doctors appointments. Well I had to get immediately home because I felt sick and had an issue with heart rejection. At that point in my transplant I was about 7 months out.
It feels great to be back here, to see my sister, to get away from the stresses of life. But after I got here and "let loose", I realized this is a practice run. There are so many things after transplant that I had to make into a habit to do, like take medications 3X a day, take my vitals 2X a day, refilling my medications, being in contact with my doctors, etc. Being on vacation and really taking care of yourself is another thing that I have to learn to make a habit of doing.
When I first got here, I thought: "Hey, I am on vacation I am going to sleep when I want, eat when/what I want etc." and because of the time change my medications schedule got off-even though I have NEVER missed a dosage-EVER! But after two days it made me feel not great. It just made me realize that I had to keep in the motion of normal life if I wanted to stay feeling well. There is so much of this transplant life that I still have to learn about and this is just one of the things, that I can't just basically be lazy.
So, the other part of this is that I am beginning to feel like I am in the "free and clear zone." I am not sure of this because I still am waiting until next month to have my annual, but things are getting easier. I have not had major rejection since may-minor since July, I am getting used to the nausea, less migraines, and I am getting used to the back pain. I am working out the foggy head and at the yearly the doctor will decide if I need to see a specialist so I feel more confident about returning to school. Medication is working for anxiety, I honestly don't feel like I am getting anything from the therapist they hooked me up with-she is nice, she just doesn't seem to understand what it is like to have a chronic illness, and I just no longer feel the need to see her, I feel like a long of the people I have met in the transplant world have helped me think through the issues I had with my transplant better than any session I had. Life is just getting into a good rhythm! I am starting to think about making plans, I am seriously considering going back to school in January or if it doesn't work out in the Fall-like a school I have to go to-like physically go to, not online. This trip just made me realize that the original trip I was not quite ready to take, I was just not quite there health wise and I think that the minor rejection sent me back before I did anything too stupid; although this time I drank the tap water for three days before anyone told me that you are only supposed to drink bottled water! Should I make my plane ticket home now, or wait out the three weeks?

The pic is when I took my nana to the hospital, she had an allergic reaction to the flu shot, but I still had to wear the mask-the duck mask (ask all the other patients called me in a wisper "look at that girl in the duck mask").

"Professional Volunteer?"

So, I have "moved up in the ranks" of volunteering (I got a REAL badge!) and now I get to run around the hospitals with the paid donor service lesions (the people that work for the organ procurement agencies-the people that meet with the donor families or schedule training event dealing with organ donation for hospitals). We only got through a very small part of Santa Clara's HUGE county hospital and an even smaller part of Santa Clara Regional Hospital, but I learned so much today. It was great to be there today for so many reasons:
Many hospital workers had never met a recipient: Even people that directly deal with donor deaths had never met a recipient, so I think it was nice for them to finally see that they were actually doing something, that the organs and tissue were actually getting somewhere.
I learned more about CTDN and how they acquired the tissue bank and more about tissue banking: CTDN is a very complex network and there is so much going on with it that there is always more to learn. Thankfully Mina was training a new hire, so we were both learning the ropes. This is good for me because I think I would like to work for something like CTDN one day and it gives me experience with it. It is getting me out in the hospitals and familiar with the hospitals, and I already know when to call CTDN, which is more than I can say for some experienced nurses. Did you know CTDN does an audit of hospitals to see if the hospital staff missed possible donors. I also learned more about tissues donation. There is all this hype about organ donation because it saves lives, but tissues donation also saves lives and I just learned more about that side of donation.
Hot Doctors: We all agreed the ED has the best (looking doctors, and friendliest! doctors). Since two out of the three of us not married and would be perfectly fine with marring a doctor, we decided me must visit the ED of every hospital-for an extended stay. Infact, we got invited to the Halloween party of one hospitals.
New Friend/Good Conversations: There was LOTS of driving and LOTS of traffic, so it was good that everyone was so open, friendly, and talkative, sometime those kinds of rides can be sooo awkward! I got to hear Kari's liver transplant story-she was transplanted when she was 9 years old! And I finally got to hear Mina's husbands story. That was such an emotional story. Sometimes hearing a story like that makes you wonder how someone can get through life. Mina has been going to school for counseling, going through what she has gone through she is so in-tune with the transplant world and our talk was better than any and all the therapy sessions I have had combines from all my transplant career.

A Perfect Day With a Heat Transplant/A Perfect Day Without A Heart Transplant

I got this idea from the excellent blogger extraordinaire Josh at his blog "Welcome to Joshland" (http://www.welcometojoshland.com/2010/08/my-perfect-day-stolen-post-idea-from.html) you have to check him out, his is an all around cool guy and has funny blogs, medical videos, etc. and is an inspiration for people with life threatening illnesses. He has struggled with Cystic Fibrosis and Cerebral Palsy all his life. I am jealous of the CF community because they have such a great community, the heart/transplant community is just starting to build up, but is not nearly what the CF community is. One of the things I would like to work on is to make my community as great as their, to provide support to my fellow patients. Josh also inspired me because my best friend's brother also has Cerebral Palsy and has had major struggles his whole life, so he has taught me a lot more about it. Anyways on to my post:
A Perfect Day With A Heart Transplant:
My perfect day is actually a day spent at the doctors office. I know that sounds so weird, who wants to be at the doctors, right? But, it is a whole day that me and my mom spend alone, together, we talk together for about an hour there, have lunch together-talk, talk in between appointment, and then talk in the car ride home. We treat each other that day, the hospital is in a fun place, Santana Row, so we go shopping and go out to a great lunch and just get to spend quality time together and indulge. It makes actually being at the doctor, and the pain (like if I have to have a heart cath) so much easier. At the end of the day I don't want to leave my mom.

I honestly don't know where my life would be if I did not have my heart problem. I think I might have gone to art college for Jewelry or fashion, I either wanted to design purses or wedding dresses. I know the whole fashion thing sounds weird since I am not all that fashionable of a person, but I love to dress other people, not myself, and I love purses. And I know that it sounds weird to want to design wedding dresses if you are not crazy about weddings, but it was actually for specific people.
But since I have my illness, I have really gotten interest in medicine. I think that if I had the stamina to get through medical school (to get through the long hours and then residency) I would do that. I would love to go now, but I know if that is really a possibility. I am somewhat glad I have my illness because it sort of awoke me in life. I went from a really fake life, not really doing anything to help society, (I hope I don't offend anyone by saying this) but what does a hair dresser really do to help people, it is a really fake job, you constantly have to tell people they look amazing-even when they don't. I feel like when I become a nurse I will be able to help my fellow transplant patients, like really help them. I have a lot of patience and compassion for people, which some people in the medical field do not have and that makes being in the hospital a lot harder.
Okay, so know that I have actually written this post I realize this is not at all how I meant for it to turn out. Part of it was about a great day with a transplant, and part of it is how my life would have turned out without an illness. What can I say, my mind still goes in a million ways, hahah.

A turly inspiring person

So normally I would not write about fellow heart transplant patients 2 posts in a row, but these two ladies just struck me. This lady I am going to introduce you to is so inspiring. She won this years essay contest for the Ride of a Lifetime contest, after you read her story I will explain why she touched me so much!






Jennifer Shih
Atlanta, GA
Heart Transplant Recipient

The phrase “the best laid plans of mice and men often go awry” from Robert Burns is very fitting for transplant patients. I was a Pediatric Cardiologist fellow 5 years ago when my plans went awry. I had just finished 20 years of schooling, and 3 years of pediatric residency to fulfill my dream of becoming a pediatric cardiologist at Cincinnati Children’s Hospital, a very long-term plan. While on call one night, I felt a little tired and a was a little short of breath after climbing a flight of stairs to my office, so I decided to perform an echocardiogram, an ultrasound examination of the heart, on myself. I found unexpected fluid around my heart, which was strange since I had never been sick in my life. In fact, I was the perfect doctor because I rarely seemed to catch illnesses from my patients.

Because of the fluid in my heart, I decided to take myself to the ER. It was a good thing that I did because I went into cardiac arrest 6 hours after I performed the echocardiogram on myself. At that point, I underwent emergent treatment and a med-flight to the Cleveland Clinic. Upon arriving there, I arrested a few more times and my heart could not be shocked into working order again. To save my life, I was brought to the operating room to have a BiVAD placed to keep me alive until a lifesaving heart could be found to transplant. Since I essentially did not have a heart anymore, I lived in the ICU until I heard the news a heart had been found for me. It had been about a week since the time I was completely normal to finding out I would die without a heart transplant.

After my lifesaving transplant, I recovered for 3 months in the hospital and 2 years on disability. I wasn’t able to practice pediatric cardiology anymore due to the activity and risk of infection exposure. In that time I started the Have a Heart Benefit Fund with my friends. We raise between $10,000 and $20,000 each year to help fund transplant patient care, education, and research. I have always loved helping people and this has been a great way to show my gratitude to donor families as well.

I now have my heart transplant care followed at Emory in Atlanta, have gotten married, and work as a pediatrician in the neonatology department at Emory, while running the benefit. My transplant has made me a more empathetic doctor, since I can truly understand what it feels like to be a patient. It has also made me live life to the fullest even more than before and not take any of my relationships with family and friends for granted. I am forever grateful to those who give the Gift of Life.

Jennifer inspires me so much for so many reasons. She literally went as far as she could go as a pediatric resident and now is a neonatologist. When I started getting ill a lot and had to be around a lot of bad doctors, I decided that one day I would like to be a doctor and my long-term goal is to be a doctor, but I never though that would be a possibility since being a doctor is physically demanding. Reading Jennifers story just kind of made me realize it could still be a possibility. I have had my hopes set of pediatric cardiology, but in the last few months I had been thinking neonatology because the babies are so small I can physically handle them and they are less likely to be infectious.
She inspired me that she took the time off of work that she needed, she went back to work as a Dr. (she did not just get married and "quit" as a lot of young women do, while she was recuperating she volunteered, and she is giving back).
Her story just gives me a better picture of the future of my tx!

Hannah Jones-What would you do if you had been sick all of you life

So, a lot of the time I write when I am somewhere that I do not have Internet connection (I know-today where in the world could that be?) with the intention of uploading it the next day. I have (sort of) followed this little girls story and saw a special update on her, so I wanted to write a little bit about her and how I feel about her situations-which I wrote a week ago.

09/14/10 Hannah Jones
(If you are in the transplant world) unless you are living under a rock you have heard about the 13 year old girl from the UK who refused the heart transplant, but later when she became ill decided to take it. It outraged many people that this girl "refused" the transplant and then days before dying changed he minded and decided to be listed-potentially taking the heart from another person who had always wanted to live.
Tonight there was a special on Hannah and her family, 1 year after hear transplant. Hannah had AML (Accute Myloid Leukemia right after she was born, the Chemo ruined her heart and she developed Cardiomyopathy). What Hannah really said when she was first offered to be listed that she did not want to be listed then-how she said it on TV did not make it sound like she was ruling ever getting the transplant.
So, why would anyone care about this? I think Hannah was really smart to wait until she was ready to have the transplant. When I was 15 years old, at Lucille Packard, the transplant doctors tried to push me to get the transplant and I am so glad I did not get it. A transplant is truly a life changing event that you must commit your life to, and if you are a teenager you must have the maturity and the will that you want to survive. Waiting for the transplant to see how sick you could get without it makes you realize how much you needed it, how you really must take you medications, and how it was the right time. You hear so many stories of people who get Tx's who lose them because they do not follow their doctors orders (mostly do not take their medications). It is really sad because usually these people are depressed because they have just been through so much, the surgery in itself is a huge life changing event, then the medication makes you sick, and then the change in work, family dynamics, etc. But if the doctors had knowingly had given Hannah the heart earlier, she might not have taken the medication, this could have resulted in a wasted heart, that could have gone to another sick child, that would have been really sad.
I somewhat feel that I can relate to Hannah. Although I did not have cancer as a child, I have been sick since I was an infant and my parents has drug me to all sorts of doctors to figure out what is wrong with me. When I was about 17 years old I just got to the point that I did not care anymore if I got the Tx or not, I did not want to ever see a rude doctor, needle, or hospital ever again. In a way I was a lucky sick child because I was never treated like a sick child because we did not know I was seriously ill until I was almost 16 years old. I am happy for my heart transplant buddy Hannah, we are both about a year out and doing well!

Feeling So Much Better!

I am feeling so much better, back to being a human again! I am finally getting my medications "drawin in" to the right dosage and I am feeling better than I have in years. Helping my grandparenmother out (since she can only use one arm for 2 more months) has really tired me out, so I decided I did not need to use the sleep medication anymore. It has cut my migraines in half! Which just generally helps everything else.
I finally convinced the gastro to move my appointment to today, so I have been holding the food waiting to get the upper endoscopy and biopsy. I am hoping they don't find anything, but I am hoping they find the cause of the nausea and give me a magical pill to cure it that makes everyting better.
I have been doing so much, and I am so excited that I am able to do so much more! I am 99% sure I am getting a road bike for my re-birth day in Nov so I am so excited to get to use that and just generally get to get out and do stuff!
This week I have the TRIO meeting tomorrow, and Tuesday I get to see the Tx group at Kaiser, which I havent see all summer.

09/03/10

09/03/2010
So I have had one crazy busy week full of doctors appointments, cycling, and running errands. I had five doctors appointments this week, I have already been on four rides, and we ran errands everyday, I did not have one "down" or not busy day. This was the first day that I took a nap in the afternoon, and now it is 11:20 and I can't sleep. I think if I keep up with this I can stop taking the sleeping pills!
The rides just got better and better each week, I got better and better, faster and faster each week. I finally fell like something is getting better-I was feeling like I could not get stonger- but after I could climb the hills and do the same rides way faster-I figured something must be going right.
The doctors appointments went pretty well. They started on Tuesday with a pain managenet appointment. It was an "intake appointment" to get introduced to the team and their system. I got switched to a new medication called Opana-which is a mixture of Oxycodon and Morphine. It is to get me on a more scheduled way of taking pain medication, I was just taking Percocet/Oxycodon when I felt like it, which was not working because I did not want to take it-or really know when it was appropriate to take it, so this gives me more of a schedule to take it.
The next appointment was with a social worker as a therapist. One of the things that I think more thansplant centers need to have is a Psychologist on staff that is for before and after transplant care, the Psychologist at my hospital is mostly for transplant evaluation. She was extremely nice, she was close(er) to my age and we connected really well. At first I was aprehensive about going to her because she is working on her hours to get her LCSW, but she is great, and gave me great refferals. I feel this is a good time to go to therapy, before transplant mostly the doctors made me feel like I did not have an adequate problem and that I was a whiner if i went to therapy. Now that I have meet others, I know that this is a major life changing event and that it is okay to go to therapy, and probably a good thing to do. Spending so long in the hospital, and then away from home and friends and family, now not being in school and work for so long, having major surgery, and now being on all of these medications, and having all of this responsibilities has just put a lot on me and I think that it is a good idea to talk this through with someone. The only thing about this is that almost no one knows that I am going, my parents, my sister, my bff Kara, and anyone reading my blog-which I have know told anyone about. I go to a hospital 45 minutes away, where I know I will not see anyone I know, but I am glad that I did because I do not have to worry about seeing anyone that I know and I found a great social worker.
That afternoon I went to a class on sleep hygiene. It was ok. Every doctor I go to tells me I need to go to this class, and keeps putting in a refferal for me to go, so I just finally went. It was ok, the only thing I learned was that I needed was that/thought about was that I just need to stay out of the house, tire myself out, not nap, and stick to asleep schedule-pretty generic.
The next day was to a psychiatrist to manage my medications. He was very nice. I was first given prozac and a beta blocker to help with my migranes. I did not have depression or hypertension, but the mixture of the two are supposed to help with migraines. The combination did not work and I was taken off the beta blocker because my blood pressure was too low and was given Topiramax for migraines and I am currently on an increasing schedule, but they have forgotten to take me off prozac. At a lot of doctors appointments I go to they have you fill out this form that has you select on a scale the range of tiredness, lack of energy, trouble sleeping, loss of intress in things you used to like, being sad, etc.- it is the depression test. So we talked a lot about my symptoms, most of them are just tirdness,lack of energy, trouble sleeping which every doctor has said that I am depressed, but I don't think I am depressed becuase I am not sad and I have not lost interet in what I used to like. I think the other symptoms I do have are side effects of medications, the other side effect I have is anxiety, which I know is cause by the prednison. I know it is caused by the prednisone because when I go on high doses it gets worse, but when it gets lower it doesn't get as bad. So he tried to just tell me to "work through my anxiety" and I just bluntly said I wanted a pill, and he gave me on, and I think it is working. So that is nice.
And sometime inbetween there I finally got an appointment with a clinical pharmacist. The clinical pharmacist was able to help my mothers friend a lot, but the one I talked to was totally freaked out by my medication list and was not even willing to see me, so that was sort of a downer for the week. But the rest of the appointments were great. One of the reasons I wanted to see the clinical pharmasist was to see if she had a better idea for a schedule of how to take my medicine because my nausea is getting worse and worse, I have an upper GI scheduled for the end of the month, but at this point I cant wait that long, so I think if the Dr. doesn't tell me by the end of Tuesday that he can do the Upper GI that week I am going to urgent care or the ER to get it done. The Transplant team is just like: "Oh, you are just going to have to live with this nausea for a year to 18 months" I had bad nausea before transplant, but not as bad as this. I am just waiting for my medication to come up.
So back to good things. I am hoping if it is cool tomorrow, to ride at least 20 miles. I really want to do the 64 mile Solvang ride in November and need to rack up some more miles. I have rode over 20 miles, but not in about 3 weeks. I would love to do that, it would be exactly 51 weeks after tx and in honor to Ruben.
I know I have said this many times before, but each day, and each stumble that I come across, I realize that I could do so well working in the transplant field. I am getting so much experience as the patient, things that a person that did not go through this would not know.
Jackie told us that she gets off December 22-26, I am so excited she will be home for Christmas, but not my new birthday, I am hoping maybe she will have those four days off and she could fly home? I would love if my whole family could spend the 19 and 20th with me.

Just A Little But of Everything

So this has been one busy week, and today was only Tuesday! Sunday, I went on a Bike ride with Eric (my BFF and (boy) cousin-who is closest in age to me. I should have found a cute picture of us when we were little to put up, but I just thought of that and it is 11:00 pm and I have an 8:30 am apt that's 30 min away tomorrow. :/. Anyways, I went with he and his girlfriend Rachael, who is so sweet. She is a great girl that fits in with the family so well. Both of their fathers are really into riding-her father is a professional rider and my uncle is a coach for team in training and has done rides like the Death Ride a stuff. They both have really long legs and are very fast, and I have very short legs and I am very slow, but she was so sweet and just went with the flow and chatted and rode! That day I did not get up the last hill, but the next day I went on the same ride with my aunt (who is a triathlete and I think has done an ironman-but I am not sure.) and I made it up the hill that day! I was so excited! Since I have been riding so much (I really have-like 4 days or more a week for over an hour each day, about 10 miles or more-my heart feels great each time-the rest of my body is exhausted-lol) I bought a Camelbak-I was anti them because I hate the mouthpiece (its like sucking on a boob) but one of my medications causes dry mouth and I was having to stop for water a lot or I just got too dehydrated and got too dizzy feeling, and I am not that talented to reach down and get my water bottle, so now I have this. It has worked out well so far, and kept my water cool. Another reason for getting it was when I get off my bike I get dizzy and fall over, I don't fall over while I am riding, but when I am just standing, so now I don't have to stop-perfect. And 1 water bottle was not enough for me, this holds 3 liters. Anyways, 1 last thing about my new toy-it was the perfect weekend to buy it because it was $30 off to begin with, then I got $20 off because my dad was a member, so it was half price! I love getting to the register and finding out something I thought was going to be $100, is on sale and is now $50! Woot Woot!
Then Monday I did my little (literally she is less than 5 feet tall) sister's hair (I am a hairdresser). I highlighted her extra long hair and cut it. It took forever, but I was happy to do it, because I was not sure if I would be able to get through it, but I sat in a chair and made it! And I was happy to be able to do it for her, today was her first day of her junior year! Then I took her to get a new back to school outfit, and there was another sale-Woot! Woot!
Today, I finally had an appointment with the chronic pain clinic. It was ok, they prescribed me a new (stronger) medication called Opana. I was/ an kind of nervous to take it, but they really pushed it on me and I felt like I could not say no. When I asked about getting off of it, they said it could be no problem at all. Well I had this awful experience a few weeks ago where I switched from taking a lot of Percocet to Morphine (which made me hallucinate) and then to a low dose of percocet. No one warned me to slowly switch off, so I just stopped the morphine and switched to percocet. Oh mylanta, it was terrible, I should have gone to the hospital. I just though I was seriously depressed because I felt awful all of the sudden and I could not stop crying-I cried over everything-EVERYTHING. Looking back on it, it is funny how I reacted to everything, I had sever anxiety and would cry at the drop of a hat. So, anyways, I took the pill tonight it was supposed to make me drowsy, and I am wired.
So through these last few days, it is just another realization how fortunate I am to have this support system that I do. My Aunt, Uncle, Cousin, have been my encouragement to get out of bed and bike ride and are always telling me I am doing a great job. My BFF Kara is such a great friend. I can't believe she has stuck by my side, I am so luck to have a friend like her (and she isn't even related to me). She visited me at the hospital, at both Santa Clara and Stanford, our "weekend house" that we stayed at after the transplant, and she is now my connection to the social wold. Sometimes I am just not good at calling her back and such, but she is always understanding that I am not feeling well or am tired and is never mad. My Mom, she goes to all of my appointment so I don't have to be alone. I hate going alone places. And she is just always supportive and running errands for me. My Ante and Uncle(s) they all encourage me and are there for me and support me every way they can and do anything anything they can. My grandparents, they keep me busy and have given me one on one time with them after tx, and a quiet place to stay (my grandma just got a new shoulder so I am driving her and my grandfather around). My father, he is willing to do anything I want, or get absolutely anything I need. He took me to my first TRIO meeting and is going back with me. He always wants to be with me and calls me everyday.
To end on an excellent note-I know this is an extremely lengthy post, but I haven't posted in a long time, so it balances out. I GOT A LETTER BACK FROM MY DONOR FAMILY. I will try to write out everything tomorrow, including my letter, the family's letter (its short and generic) the donors picture and what the family wrote in this years Honor and Remembrance ceremony book.

Crickadoddle

about is a picture of my baby cricket, whom I missed when I was away from her (while I was in the hospital from October-January). I took the pic to send with my bio for a ctdn thing and for the trio youth group. She is a Siberian Crickadoddle (or a Pappillon)
So, I have had extreme nausea for quite awhile now, and I had a biopsy Tuesday and got the results today. Last week I lost 10 lbs in 1 week for not eating ( I have Kix for breakfast, no lunch, and no dinner, and maybe a snack with night meds like 5-10 small pretzels). I thought I was definitely rejecting, and I was almost hoping I was-so I could take massive doses of Prednisone and end the nausea, but no, I got the results today and it was just a 1r/1a, so my medications don't get changed. (The scale ranges from 0 (no evidence of rejection to 3 which is bad rejection). So tomorrow I am going to a gastroenterologist to see if they will scope my stomach to see if I have an ulcer or infection, but this is just a consultation, so I don't know when or if I will actually get this test.
I just can't wait to be fully recovered from the tx. This is one of the frustrating things of the tx, no one knows what is wrong and I just want to be normal, feeling well, and in school and working! I don't think I have ever wanted to go to work or school (or ever will) was much as I do now! But my mind is still on another planet and I can't remember anything.
But I am still thankful for this whole process, it has taught me so much and has slowed down my life from what it was-I was totally all over the place (working on more than one Bachelors degree at two different schools, volunteering, and working over 25 hours a week). As I like to joke-it has given me the gift of time-time off from the craziness of my normal life.
I have been trying to think of/do things to maximize my time that I have off. One of the things I am doing is (trying) to learn Spanish, volunteering as much as I can with transplant related things (I would like to work in the transplant field), lately I have been thinking about collecting data for a project I know I will have in nursing school that I could base around transplants.
So, in December I was asked-kind of pushed into speak at a religious women's event and I just don't know what I am going to talk about or how I am going to do this speech at all. Almost everything I have done for CTDN I have almost winged it, and I joke with my mom and grandmother that I am going to wing it, but I honestly don't really know how I am going to deliver the speech. Usually I am somewhat funny, and I really have to be serious-which I am not. And then my mom says I can't make it sad-which would be the next thing to do, so I guess I will deliver a boring speech? Hahah, like I said, I think it will go best if I "wing it"