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,".

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.