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{ http://www.lennieweese.blogspot.com/,

"Hey, I am Allie and I just got a heart transplant. I have been blogging about it offline for awhile, but reading other Tx patients blogs has really helped me. So I am putting mine out there to help others! Enjoy! By the way, I got the name "Girlfriends guide to heart transplants" from a book Rachael (from the TV show friends), the pregnancy book she read was called, "Girlfriends Guide to Pregnancy".

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Allie
Member
Username: Alliebuggy88

Post Number: 2
Registered: 06-2010
Posted on Wednesday, October 20, 2010 - 09:06 pm:   Edit Post Delete Post Print Post

Hi, I am Allie, I had a heart transplant November 2009 and my blog is
www.lennieweese.blogspot.com
Allie
Member
Username: Alliebuggy88

Post Number: 3
Registered: 06-2010
Posted on Wednesday, October 20, 2010 - 09:08 pm:   Edit Post Delete Post Print Post

Wednesday, October 20, 2010
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").

from lennieweese.blogspot.com
Allie
Member
Username: Alliebuggy88

Post Number: 4
Registered: 06-2010
Posted on Wednesday, October 20, 2010 - 09:09 pm:   Edit Post Delete Post Print Post

Monday, October 4, 2010
"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
Allie
Member
Username: Alliebuggy88

Post Number: 5
Registered: 06-2010
Posted on Wednesday, October 20, 2010 - 09:10 pm:   Edit Post Delete Post Print Post

Tuesday, September 28, 2010
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.
Hostess Meagan
Forum Leader
Username: Newheart14

Post Number: 1412
Registered: 01-2009
Posted on Wednesday, October 20, 2010 - 10:06 pm:   Edit Post Delete Post Print Post

Hi Allie,

Welcome to Transplant Buddies and thank you for sharing your blog with us. I have enjoyed reading all of the above, and I plan on reading the rest when I have a minute.

I hope you keep your blog up and visit us often.

Take care,
Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF

- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan

Allie
Member
Username: Alliebuggy88

Post Number: 6
Registered: 06-2010
Posted on Thursday, October 21, 2010 - 08:00 pm:   Edit Post Delete Post Print Post

Thanks Meagan,
I hope my blog provides support for those going through the same thing, I know reading other peoples blogs have done that for me.
Allie
Allie
Member
Username: Alliebuggy88

Post Number: 7
Registered: 06-2010
Posted on Saturday, October 30, 2010 - 01:08 am:   Edit Post Delete Post Print Post

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 comming.
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. lennieweese.blogspot.com
Jack R
Member
Username: Jack_r

Post Number: 55
Registered: 08-2010
Posted on Saturday, October 30, 2010 - 01:42 pm:   Edit Post Delete Post Print Post

Hello Allie,
Congratulations. It is a difficult journey when one, as young as you, hasn't a lot of life lessons to fall back on. Remember the emotions are normal (even for a Heart Transplant 6 years out and much older then you). Some can be tied to steroids and others given the enormity of this journey.
As you are already aware other people have, if they can, great difficulty understanding the totality of what has transpired. More importantly they aren't aware, as you are learning, the limitations regarding timing of medicines , exposures, clubing (no alcohol) etc., we manage to deal with.
Enjoy life and continue to seek {and you will find} your own balance. Your also a great roll model for your peers who may be facing health issues.
Have a nice day.
Jack R
Kate/Jeremy's Mom
Member
Username: Dixieluvinchik

Post Number: 214
Registered: 06-2009
Posted on Saturday, October 30, 2010 - 11:40 pm:   Edit Post Delete Post Print Post

Hi Allie,
Welcome to transplantbuddies, I'm enjoying your blog so much. You are an inspiration!
Love,
Kate
Kate/Jeremy's Mom

Jeremy donated Easter morning,4/12/2009

-"How can we not be organ/tissue donors?" -Jeremy D. 11/28/80 - 04/11/09
- Baton Rouge,LA. USA-
Rise
Board Administrator
Username: Rise

Post Number: 14767
Registered: 05-2003
Posted on Sunday, October 31, 2010 - 11:55 am:   Edit Post Delete Post Print Post

Hi Allie

I love your blog. keep on posting. I am going to add a link (start a new thread) to the top of your blog for you to add your friends blogs or whatever you like.

Enjoy! love your attitude!
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Jackson Memorial Hospital

Join Facebook

Questions- Contact Hostess Rise

My Photos on Transplant Friends

Allie
Member
Username: Alliebuggy88

Post Number: 11
Registered: 06-2010
Posted on Monday, November 01, 2010 - 04:11 am:   Edit Post Delete Post Print Post

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!
Allie
Member
Username: Alliebuggy88

Post Number: 12
Registered: 06-2010
Posted on Monday, November 01, 2010 - 04:28 am:   Edit Post Delete Post Print Post

Thanks Jack for the reassurance and advice and for taking the time to read my blog.
Kate, you are inspirational! Donor families are always the inspirational ones. I just got incontact with my family and am learning more about them. I was so glad they were okay with having open communication. Have you heard from any of your recipients?
Rise, thanks for adding the link.
-Allie
DAP1122
Forum Leader
Username: Dap1122

Post Number: 2106
Registered: 05-2008
Posted on Tuesday, November 02, 2010 - 07:19 am:   Edit Post Delete Post Print Post

Allie,

Glad you finally arrived at TransplantBuddies!!

This is an INCREDIBLE site!!

Hugs, DAP @ My2ndHeartBeat :-)
New blog/web page -
My2ndHeartBeat
Dap's Email

Heart Tx - 5/11/2007
DAP
Ohio, USA

Join our Transplant Buddies Calendar
Allie
Member
Username: Alliebuggy88

Post Number: 14
Registered: 06-2010
Posted on Sunday, November 07, 2010 - 11:41 pm:   Edit Post Delete Post Print Post

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
Kate/Jeremy's Mom
Member
Username: Dixieluvinchik

Post Number: 218
Registered: 06-2009
Posted on Monday, November 08, 2010 - 10:02 am:   Edit Post Delete Post Print Post

Hi Allie,

Thank You, I have received letters from CJ, (got his liver from Jeremy.) I get a letter from Mona,(received her cornea tissue from Jeremy) at least once a month. We are a lot alike, and she makes me laugh.

I write to the two kidney recipients, and the other cornea recipient every six months, well, eight months last letters.Ha! I'm slipping.

We knew when we left the hospital that everyone had signed the papers to write/meet us someday. It is a great comfort to hear from them.
Most of my family are registered donors, so it is our plan to help someone,( just like me.)
Love, Kate
Kate/Jeremy's Mom

Jeremy donated Easter morning,4/12/2009

-"How can we not be organ/tissue donors?" -Jeremy D. 11/28/80 - 04/11/09
- Baton Rouge,LA. USA-
Allie
Member
Username: Alliebuggy88

Post Number: 16
Registered: 06-2010
Posted on Sunday, December 26, 2010 - 01:31 am:   Edit Post Delete Post Print Post

Hi Kate,
Thank you! I just got another letter from Olga (Ruben, my donor's sister-the person that raised him). Since this is the time of year that she lost him, and I know that she is really missing him, I am trying to write her about once a week. I know that she really wants to meet, but she speaks spanish, and I don't. Have you meet any of Jeremy's recipients?
Allie
Allie
Member
Username: Alliebuggy88

Post Number: 17
Registered: 06-2010
Posted on Sunday, December 26, 2010 - 01:32 am:   Edit Post Delete Post Print Post

Saturday, December 25, 2010
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.
Allie
Member
Username: Alliebuggy88

Post Number: 19
Registered: 06-2010
Posted on Saturday, January 01, 2011 - 01:30 pm:   Edit Post Delete Post Print Post

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.
Allie
Member
Username: Alliebuggy88

Post Number: 21
Registered: 06-2010
Posted on Friday, January 07, 2011 - 08:59 pm:   Edit Post Delete Post Print Post

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.
Allie
Member
Username: Alliebuggy88

Post Number: 25
Registered: 06-2010
Posted on Sunday, January 09, 2011 - 04:54 am:   Edit Post Delete Post Print Post

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!
Allie
Member
Username: Alliebuggy88

Post Number: 26
Registered: 06-2010
Posted on Sunday, January 09, 2011 - 05:11 am:   Edit Post Delete Post Print Post

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!
Allie
Member
Username: Alliebuggy88

Post Number: 27
Registered: 06-2010
Posted on Monday, January 10, 2011 - 02:02 am:   Edit Post Delete Post Print Post

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.
Allie
Member
Username: Alliebuggy88

Post Number: 31
Registered: 06-2010
Posted on Wednesday, January 19, 2011 - 12:24 am:   Edit Post Delete Post Print Post

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,".
Allie
Member
Username: Alliebuggy88

Post Number: 37
Registered: 06-2010
Posted on Sunday, March 13, 2011 - 11:10 pm:   Edit Post Delete Post Print Post

Hi everyone,
I am now almost 14 months out of transplant and this June I am doing a 100 mile bike ride around Lake Tahoe! Please check out my personal web page ( http://pages.teamintraining.org/sf/ambbr11/aweese )to see my story, progress, and why I am doing this ride!
Thanks!
Allie
http://pages.teamintraining.org/sf/ambbr11/aweese
Allie
Heart Tx at Stanford
Nov 20, 2009
Restrictive Cardiomyopathy
lennieweese.blogspot.com
anderson111
Member
Username: Anderson111

Post Number: 6
Registered: 02-2011
Posted on Monday, March 14, 2011 - 07:45 am:   Edit Post Delete Post Print Post

hii I want to know about heart transplantation so please help me...
Allie
Member
Username: Alliebuggy88

Post Number: 40
Registered: 06-2010
Posted on Wednesday, April 06, 2011 - 11:35 pm:   Edit Post Delete Post Print Post

04/06/2011 3.5 Hours of Neuro testing!!! Donít they understand Iím 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 Karaís house because I left my HUGE purse in her car last night (which included my driverís 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 wonít 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.
Just another crazy day of testingÖ
Allie
Heart Tx at Stanford
Nov 20, 2009
Restrictive Cardiomyopathy
lennieweese.blogspot.com

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