Tuesday, March 09, 2010-No thrush haha and depressing transplant support group.Today was another support group meeting, it was a presentation by Dr. Parek about coronary allograp vasculopathy. It was very informative and
interesting, it was like being in lecture again, but when my mindset changed from just thinking this was a normal medical lecture to this could be a
problem for me, I found the lecture very depressing. A lot of the time I feel like I am on the verge of crying, I don't know why, it's not like someone has hurt my feelings or I am depressed, I just feel like I
am about to cry. I have been doing so many fun things, I don't understand why I am feeling like this, and that is bothering me. I feel like with my family we do not talk about our emotions at all, so this is hard to talk with my mom about and so far Dr. Epstein has not really chatted
with me. Today, when leaving the support group he asked if I wanted to meet with him, but unless I am made to do it, I probably won't do it because it
makes me feel weak. It's like when I almost started crying in front of Dr. Parek, I felt like I was weak, and/or she was winning our fight, I could not let
her see me cry. I kind of just want to chat with a psychologist at the local hospital, but I don't want my family to know about it, so I have to wait until I
start driving again. Hopefully today will be better.
Monday, March 15, 2010This weekend I went to a pub with Jackies friends from school. It was on San Pablo and was kind of fun. I am trying to get Jackie and Jenn to do
more things like that, we all need to be more social. It was a nice group of people from her school, but we had nothing in common and our political
views were very different, so we did not get past just the first layers of conversations, hi, how are you, what is new, do you have a job yet, etc. Yesterday took 2 walks (almost 45 min total). I felt really good yesterday and feel really good today. I am waiting to see if nana wants to go on a
walk with me, her toe is hurting. I started back on the diet and feel pretty good. I feel so good about this diet becasue last time I did it, I was not that committed to it and I still lost about
40 pounds. So I am going to do the same this time and hopefully I will lose more. Hopefully getting the weight off will let me do more things easier with
this new heart. I would really like to do more distance running soon. This summer Kara is doing yoga at DVC with me, I am so excited! I am hoping
to get toned arms, my legs are pretty good, but I need to wait for my chest to finish healing before I do arm weights. Maybe I will do low resistance,
but with a lot of reps?Tomorrow is my monthly visit, but my first time with just Allomap!!!!! But I have not actually got the Allomap drawn yet, I didn't realize I needed an
appointment. Maybe after me and mom will do something fun! This weekend is Clear Lake, I am so excited. I haven't been in 2 years! Hopefully I can walk up the driveway and hopefully I can do the JetSki by
myself! I am so excited!
Hi Lennie,
ReplyDeleteCongrats on your new heart!! I took that same path almost 3 years ago and am dedicating a big part of my life into helping others get through the Tx process by volunteering at my transplant center, and, needless to say, I am a HUGE supporter of anything to do with organ donations.
If you have any questions at all, or just need to chat, scream or vent, please feel free write.
Take care, Don
My blog = http://My2ndHeartBeat.Wordpress.com
Email = My2ndHeartBeat@Gmail.com
Hi Lennie,
ReplyDeleteThank you so much for taking the time to comment on my blog. I was so very excited to hear from you and read a bit of your blog.
My head is spinning with so many questions I have for you and your mom. I hope you don't mind me asking. If you are not comfortable sharing your experience I completly understand, but if you don't mind...I would greatly appreciate it.
A bit about my girl Kate! We 1st learned of Kate's special heart at my 20 week ultrasound. At that time they diagnosed her with HLHS Hypoplastic Left Heart Syndrome, however once she was born and they did an echo on her they realized that was not the case... it took a few months for the various cardiologists at Children's Hospital Boston to give us an offical diagnosis which is Resstrictive Cardiomyopathy.
Kate is currently a vibrant, funny and if I do say so myself ADORABLE 28 month old. She has been extremely healthy. The biggest concern we have at this moment is her lack of weight gain. She is weighing in at 20lbs...and LOVES to eat! She is on 3 heart meds...that seem to be working for her.
I've asked her cardiologist on more than one occasion what the time frame is that we are looking at... and the answer is always we just don't know!!! DRIVES THIS MAMA CRAZY! He did say that most patients with a Restrictive Cardiomyopathy diagnosis are on the transplant list within 6 months. Kate is not on the list at this time. He doesn't really have an answer for why or how she is doing so well clinically.
I wonder if you would be comfortable sharing a timeline with me. As to how you progressed and ultimetly ended up on the transplant list. How long were you on this list?
What was day to day life like for you growing with this particular CHD?!
If you are more comfortable emailing me that would be great amieemurphy@comcast.net Or if you think it would be easier to chat on the phone, I would be more than happy to give you a call at your convenience.
Thanks so much!!
Fondly,
Amiee Murphy
Mom to Kate!
Hi Lennie, It's Angela from the other blog. WOW!!! I totally get the whole emotion thing. Me and my family are open with emotion, but it was still hard for me to tell them I was having such a hard time with it. I felt like I had to be a rock. That if I showed fear, then everyone around me would see it as something fearful and we would all just cry. Go to God. When ever I got like that I just went to my room, cried in my pillow and prayed and read my bible. It does WONDERS!!!!! I will be praying for you through such a hard and difficult time. Can I share a verse with you? I LOVE it . "My strength and my heart may fail, but God is the strength of my heart and my portion forever" Psalm 73:26 :D Thank you for being so willing to open your heart to us! :D It is a blessing in many ways! :D
ReplyDeleteI just saw I had comments!!!! Thank you everyone!
ReplyDeleteDon:I just started volunteering with the OPO in my area (California Transplant Donor Network/Donate Life) and have done a speech at a Junior college for nurses in their last semester.
Amiee: Good news! You daughter can have a somewhat normal life. I had symptoms from infancy (they are my first memory-having the chest pain) but I just got transplanted at 21 years old. The annoying thing about RCM is that there is nearly no research on it, so very little medicine to help. What medicines is Kate taking?
My heart rate slowed to 50 bpm when I was 15 and had to get a pacemaker. And at 21 I started developing edemas and needed duiretics all the time and had Vfib.
Growing up with RCM wasn't so bad until I got the pacmaker, then I had constant nausea, exhaustion, and migraines. But after transplant I felt sooooooooooooo much better. Like I woke up around four hours after they closed my chest and was talking to people, telling them how good I felt! I wish I would have gotten the transplant sooner.
I was on the list for about 19 days, but I have type A+ blood-which they say is an easy match. What is Kate? Honestly, there is no way to say how long the wait will be, my doctor kept saying it would be a long wait because of my size (so I didn't ever think it was going to happen and totally did not prepair) and was called in 19 days. I was also a status 1b, becuase I was on IV medication. It also depends on what state you live in/what area because hearts can't travel far. I live in a highly populated area. And just so you know, you can be listed at more than one center. If you have any questions-ever-don't hesitate to ask. I am here to help whomever I can!
Angie: Thank you so much for the prayers, kind words, and psalm. I had not read that one-I love it! Hope all is well with you!