Sunday, February 28, 2010

Blogs so far

Sunday, November 29, 2009-Last Day At Stanford!
I am so excited to get to the hotel tomorrow so I can use their gym. I can believe tomorrow I will be able to run! I have not done it since June 9, 2003. I just realized that all those dreams of running will become a reality soon. I can't wait to start strengthening this heart and getting strong. I am thinking I will be able to run with everyone else soon, maybe a half marathon? That would be so cool, a dream come true. I feel invinsible, that running and everything will be no problem, that all the sudden I am going to be able to loose the weight. I literally have dreamed at night of running, and I can not believe that soon I will be able to do it. And then it hits me, I am not preparing my self, this is going to be hard work, I am going to have bad days, running is going to be hard. I have to get the weight off and the prednisone weight off. I am worried I am not going to want to eat organic, I will eat junk and that I will stop brushing my teeth 5X a day, or worst of all, I will get bad at taking the medicine because of the side effects. In the back of my mind I am worried that everything is not going to go as smoothly as it has been. When I look around at all of the other transplants, I think something must go wrong soon, how can it all be so good? When is this going to get taken away from me? Sometimes I get overwhelmed with worry that I will need a pacemake or this time even worse-an ICD. I watch my heart rate and rhythm constantly in the hospital to make sure everything is ok, and try and reassure myself that I won't need one, but I must say, I am still terriffied.
Update-afternoonI started researching how to sign up for the Nike Women's Half Martathon and instead found a training schedule on the website. It's a walk to 5K run in 12 weeks. Todays workout was walking 15 min. At first I was a little SOB, but by the end I felt great and didn't want to stop (but also didn't want to wear myself out). The nurses joked that I could just walk down to the cafeteria and get my own dinner, haha. God is so good, I though this would be way worse. Tomorrow is walk 5 min, run 1 min (repeat). I can't wait for the 1 min run, a little worried about the pain. I got a really cute Timex from Target before I went into the hospital, and felt stupid for spending the money, I almost returned it, but it is a bright pea green and soo cute. Im glad I kept it, now I can use it!While I was walking, I all the sudden remembered I would be able to go skiing. Probably not this year, but definately next year!!! Sooo excited. Haven't done that since the 2003/2004 season when I got sick, and dad got scared and took us a bunch. Gotta save up money now!

Wednesday, December 02, 2009
Today I found out I had my first bought of rejection-mild to moderate (3A/3R). I had been having severe headaches since the transplant, but today I woke up nauseous (which seems impossible because of the side prednisone making you feel like you can't stop eating). When we left Stanford I was not neasous for quite a few days, I was so happy, it was the first time in a long time. On discharge, the NP, Christine mentioned one of the side effects of rejection was neasea. For some reason I knew this morning that was what was going on. Fortunately today my biopsy results came back and showed this. This morning, when I did not want to eat my breakfast I knew it was rejection, I didn't say anything because I did not want to be dramatic, but I just knew it. The nurse called my phone a bunch of times, but I missed it and she just said she knew why I was nauseous. I knew for sure then. I didn't get the message until like 6 that night right when we had gotten to dinner at the hotel. Thankfully I was able to call Yuki on the back like and talk to her. I started crying, I was pretty shocked becuase everything had gone so well and I was feeling so good. I had to take an extra 70 mg of prednisone tonight (100 mg total for the day). The go in for IV medication the next three days (Thursday, Friday, and Saturday). I wonder what the side effects of it will be (I think it solumetrole).

Wednesday December 09, 2009Today was the first day that I did not go to Kaiser at all! We literally sat around in the room all day and watched TV (mostly Dog the Bounty Hunter-we have limited TV). The biopsy results from yesterday came back and showed the rejection was better, which I was pleasantly suppriesed at because I still feel neaseous. I am back to taking some Vicodin because I was in a lot of pain today. I am beginning to see the patterns that are going to happen. Like I probably will not feel well the day after a biopsy becasue last week and this week I felt really bad the next day. After taking the Vicodin I feel much better this evening and I am in a better mood. Yesterday was the transplant party, it was so much fun and I am glad I went. I got a T-shirt which I am amazingly proud of. Everyone was so nice and friendly. I met a 17 year old boy, Evan who had Dilated and was on an LVAD. He had his transplant July 4th weekend and returned to school in the fall. He looked great, like he didn't even have a transplant. The nice 30 something year old guy Mark M came up and talked to me again, he is really nice. I also talked with the Urologist and another lady who had Restrictive.
My face is HUGE-bigger than when I got my teeth pulled. I am glad I am so far from home because I look so funny. My skin has never been so dry, its just cracking. But my heart still feels better than it ever has before, I can't wait for the recovery to be over and to start excercising and loosing weight. Tomorrow Eileen is comming, I am so excited. I am hoping to take at least 1 15 minute walk around the parking lot, get mom's haircolor, go to the contiainer store and get craft stuff. I am going to try to knit some stuff. Yuki and Dr. N baby blankets, something for Dr. W, a neck thing for Katie, and Chemo caps. This weekend Auntie Sue and Uncle Dick decorated our place, it looks so good. It feels good to have christmas stuff because we can't have a tree (aspergillos).
Monday December 28, 2009I got to go home for Christmas Eve and Christmas day (I stayed at Nana's and Papa's). We were supposed to come back Christmas night, but at 7 pm mom and I were both to exhausted. It took me about 2 days before I felt better/not exhausted. We left the hotel at 9:30 am and went straight to the Church to drop off Christmas presents, but it was closed, so we went to N&P's to pick up Kara's present and say hi, then we got Katie from Auntie Sue and Uncle Duanes, then we got bagel sandwhiches from the bagel bakery in Dublin and went and got gift certificates from Tootsies in Danville, the I stoped by work and said hi, then we headed home to get ready for Christmas Eve and headed to AS&UD for the night. I only took the nessissities home, but it was still ALOT! There's meds, and my wedge, and my scale, bp cuff, clothes.... it was a lot. Driving home was tiring, just the bumps in the road hurt and I have a some anxiety being in the car because Im afraid that if we get in an accident or the air bag deploys it will hit my healing chest or I would not survive if we got in a big accident.
When I stopped by work they barely recognized me, especially with the mask on. No one hugged be, and it was really awkward conversation basically hi's and that kind of thing. I was there for maybe 10 minutes.
For the christmas eve party I did mom's hair at our house, and since I can't drive, took my stuff to do my hair and makeup at as and ud's. When I got there Uncle Duane was on the pourch, and waited for me to come up and asked if it was ok to hug me, I think that is the third time in my life I have hugged him (2X when we met up at nana's before the transplant). Because of all of this people have really been more open with me. Eric told me a secret the other day and said he felt closer to me becuase I had been through all of this. The few people I have talked to, I have never been so open with, nor have they been so open with me. I went in and helped a very little with getting the food together and then did nana, auntie sues, and katies hair and then my makeup. The night was fun and relaxing and Kara came! Mom and Katie took me to N&P's at like 1030, Nana was up waiting for me, freaking out that presents wernt wrapped. I went to bed and woke back up at like 430. For some reason I had really weird dreams that night and even when I was awake that morning. Nana was up at 430 and for some reason I was thinking that my mom slept over also and it was her. I got out of bed at like 730 and wrapped presents, everyone came around 10 but I was so tired i fell back asleep until like 11 or 1130 and didnt have breakfast. I got a Tiffany's heart necklace! We stayed all day and had dinner there, spageti, which me and mom have been craving. We opened our presents at night and I was exhausted by 7, so me and mom decided we could not drive back and had to stay. The next day me and nana went to breakfast at Hpit and mom came, I took a shower, we packed up and went to drop off presents to jen and eileen and then headed up. We were borded to death, but I was exhausted until today. On monday when I had my clinic visit, dr Kahle said I could go home for CEve and C day, but he did not know when I could finally go home. So I relaxed a little, not knowing when we were leaving. He also changed the dosage of my lasix from 80/80 mg to 40/20 mg. I started gaining weight and by Ceve called the office because I did not want to call over the weekend, but no one answered. I did not want to call the oncall so I called the office today. I was supposed to have a clinic visit this week, even though I dont have a cath, but I didnt know that. So anyways, I made an appointment, so I think they will discharge me tomorrow. I am know having anxiety again about going home. I don't really know why though. I didn't know when I was comming home-now I am scared
Tuesday, January 05, 2010-ZoloftToday was my first day of taking Zoloft. I hate how I didn't want anyone to know I was taking it, but everyone found out I was taking it.

‘we can do not great things, only small things with great love. it is not how much you do but how much love you put into doing it,’ mother teresa;
Sunday, January 17, 2010-First real transplant support group meetingI went to my first real, normal support group meeting on Tuesday. It was actually really good, I liked going and will try to go next time. I don't know why, but being with people who have gone through the same thing you have gone through really is comforting. I was the youngest person by like 40 years, and I didn't really talk to anyone personally, but it was really comforting. My first support group meeting was in November, it was a presentation on Sex after Transplant-mostly geared towards men. One of the transplant patients is actually a Doctor for Kaiser. He had the same thing I had, Restrictive Cardiomyopathy, except he also has systemic/AL Amyloidosis. At that meeting I was doing my stay in the hospital, so I was on the Dopamine drip and wore my hospital gown to the meeting. Leo, who also had restrictive with Amyloidosis (but just in the heart) was there and told me that since I was A+ I would have no problem getting a heart, the only other person that talked to me was a younger guy named Matt. Matt stared at me like he was a therapist, very intently, but was really nice. His girlfriend was there-she was kind of weird. The Dr. brough models of things to help men get have sex and she was touching them and seeing how they worked, I kind of felt bad for Matt, like this must be a little awkward. Matt having a girlfiend gave me a little hope though, I think he is only a year or so out and it looks like he is returing to normal life. I wish I had gotten to talk with him a little longer because he seemed like he would be open with me, but his transplant buddy came up to him and started talking. I think Matt waited in the hospital for 6 weeks for his transplant, his friend came the last four days and waiting in the hospital at the same time he was there. I wish I had a similar story, a friend to go through this journey with. I had Freddie, but I honestly don't know what is going to happen to him. I pray for an emotional change of heart, so he can get his physical change of heart. I also met Heidi , who was in the ICU with me, but I have not seen her since. Matt was not at the support group this week, I hope he is there next week, becuase it would just be nice to talk to someone about my/their experience. I have only really talked to friend and family about it, but it's different to talk with someone who has actually been through it.
In the support group people just updated each other on what has been going on in their health life. It was interesting. At the end, Flavio called on the people who had no spoken, including me. I introduced myself, then Flavio prompted me for questions like, how was your wait, and I though he meant weight and made a fool of myself, but it was funny. And then The Dr. also asked me a lot of questions. But those questions are a whole other post. Part of the comforting part of the support group was finding how we felt similarly on a lot of things. How the doctors describe the biopsy is just a tiny poke with an IV, but to me it really hurts. Debbie briefly said how she had dreaded it the days before, that was comforting because I no longer felt like a baby. Debbie and Kevin said how they had blogs. When I got home I found them and spent hours reading them. Dr. Kevin is such a cool guy and a good writer, I enjoy reading both of their blogs and hearing about their journeys. They both we so real and had amazing insight. I am about to start my first draft of my donor letter. It is weird to even say, I never thought I would be in this situation.
Wednesday, January 20, 2009-2 month anaversiary and day after 6th cath.It feels like the two months have gone by so fast, Nana said it feels like forever ago. I basically feel fully healed. My chest wound is healed and the bone feels good inside and I got my 2nd PICC line pulled yestereday after my cath. Steve M was getting his first cath (he's not transplanted yet) because he has been having some problems. We talked a lot with his wife Nancy, he might stay in the hospital for awhile. He doesn't want the transplant, but he looks terrible. I always tell him how good I feel, I am hoping to convince him to want the tranplant because right now he is listed as a 2, but doesn't want the transplant. Dr. Parek did the cath and was actually nice. She was and hour and a half late, but talked to me about making a scrapbook of her trip to Africa. The cath went ok, didn't hurt too bad. But I immediately bruised under the bandage, Dr. Parek said something about scar tissue. It felt like she took 15 biopsy samples. I felt like I blead forever, it was in my hair and all over. You can feel it running down your neck and into your hair. If this cath is good, I don't have to get another for a month. And if the next two are good, I can just get the Allopath and then my yearly. The yearly sounds scary. On odd years it is a left and right heart cath and an angiogram. On the even years it is a left and right and a dobutamine stress echo. Its a two day event and I am already dreading it. I feel fine, so I know that it will come back a 0/NER, but on the other hand you are always thinking that it's going to come back bad. I feel like I am always waiting for something to go bad. Like this has been too easy and I have not gone through enough. I just felt blah today, I didn't do anything at all, just lyed around a lot. My mom did the same thing. I still haven't gotten out of my Pj's and its almost dinner time. I had lunch at 3. This is probably the best I have felt after a cath. I am not in pain necessarily, just kind of blah feeling.
The results just came back and I got a 1A/1R. Which is ok. I get to go down to 15 mg daily on my Prednisone and don't go back for a month. I was scared becuase they called at 415 and I missed the call, Charlene left a message just saying call us back, so I was nervous it was bad news. I got really nervous, I thought if it was a 3 again I would have to get another IV, which I really hate, especially since I just got the PICC line out.
Monday, February 1, 2010-Seeing my heart and donor letter
On Tuesday we went and saw my heart at Stanford. I had 10 family members go with me, I think people don't usually do that. I am really glad I went and saw it. I think this might be an emotional experience for some people and it was not emotional for me, but it did "seal the deal" in a way for me. I think up until that day I was not sure that I needed the transplant when I did, this made me realize that I really did need the transplant and my heart was damaged enough. It also gives me something to talk about when people ask how I am doing. Instead of the long awkward pause after someone asks how I am doing and I say fine, now I can say "Wanna see my heart?!?!?!?" I have pictures of it on my digital camera which I carry with me. It was really cool to see a human heart, how many people get to do that? My heart had already been dissected, so I could see many different views of my heart. My heart was pretty gross. I saw where the restrictive part of the heart was (the muscle was discolored) and the ventricles we a third of the size. The heart is truly amazing, the makeup of the valves are so delicate, but yet they can hold back so much.I was glad to learn that they will keep my heart forever, they incinerate the livers and some other organs. I don't know why I really cared what they did with my heart, but I kind of didn't want it to just be thrown away. They also kept my pacemaker, I think that is why I did not get it back even though I asked. A part of one of the wires was still in my heart, the wire was a lot thicker than I though it would be. I think a lot of doctors think because of my age I don't want to know about what they are doing. I wish I had seen the actual pacemaker they had put in because pacemakers are so different. I also wish that I would have gotten to see the heart before they transplanted it for comparison. That reminds me I still need to write my thank you letter to my donor family. It's hard to write it, not emotionally for me, but how to phrase everything and to know what to write, what the family would want to hear.
Wednesday, February 03, 2010-Recovery
I feel physically strong and pretty much recovered, but then I have those setbacks. One of the things is I am having really bad leg cramps. Its somewhat tiring mentally to just constantly have something wrong with you. I feel bad for my family who always has to hear me complain about something, that must get really tiring. In the back of my head I am also worried that I am one of those patients who always has something wrong with them, and the doctors no longer believe their symptoms. Right now I feel good, I just get tired really easily. I still am not sleeping well, but don't take ambien because it doesn't work. It feels like I am always sleeping or laying down. I feel like I have not gotten anything done. I am also a little worried becuase it feels like I am walking slower and it's harder to walk even though I am walking everyday. It is weird to "let" you body feel better and better everyday instead of worse and worse like it has developed my whole life. Because the progression of my illness was over years, in a way I feel like I am just waiting to go down hill again, because that is the only thing my body knows how to do.
Saturday, February 06, 2010-Non-update, update
There is nothing new happening. This Tuesday is the support group, and the following is my 3 month biopsy. I can't believe it has been a whole month since my last biopsy. I am deciding on what symptoms I need to talk to the nurses about. My legs really hurt, and I am having pain in my stomach (which I have had for awhile), I have a sore throat like you get the day before you get a cold, and some other stuff. I don't want to seem like I complain a lot, or that I have too many symptoms to really have something going on, so I need to talk to them about the major ones, which I guess right now would be my leg pain. It is there all of the time, even though my Mg+ and K are good (1.8 and 4.1). I got a few thank you notes done for my time in the hospital and I am beginning to feel like I am accomplishing something. It feels good. When I am done with the thank you cards I will start on my micro. I have also knit a lot and actually finished 3 blankets. It feels good to finish it. Jackie sorted my medicine for the second time. It took her a half hour. It was really nice this week to just be able to reach in and grab the medicine and not have to sort through it. My sternal incision opened back up a little this week, so I called the office and they sent me for a CT scan, they said the outside of the scar might have healed, but the inside might not have. It took 2 people and 3 tries to get the IV in, but they got it in. I was proud of myself for taking getting 3 IV's so well, the only one that really hurt was the last one. It was weird because the days after the CT I was really, really tired and have been sleeping a lot. The night before the CT I could not sleep at all, but I was not nervous. I still have not heard the results of the CT scan, but the opening is healing, so I am thinking everything is ok.

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