Apology/New Plan

I think that I owe everyone an apology...I have had to take a little time to process everything that the DR. told me....I guess it has taken me this long to come to terms with it all..

So I got a call on Thursday the 4th after I had the Heart Cath done on Monday the 1st.. Dr. Kar proceeded to tell me that my heart is very small and that the Heart Mate II that we originally had looked at for me would not work because it is too big for me...
Then he threw in the BOMBSHELL, "we also noticed in this last cath procedure that your Tricuspid valve (which is actually bicuspid in your case) has a leak in it, it is a small leak, however that means that we cannot use the Heart Ware pump either, because if we were to put it in it would make your leak worse, and that would cause even more complications. So after discussing this with the Transplant team, and Transplant Board on Tuesday, we have all come to the conclusion that it is in your best interest to go ahead and proceed with the transplant. You will be placed as a status 2 on the list which means you are at home and stable at this point."


Needless to say I was speechless!!!!
After all of that researching, and talking to other patients about the pump, and finally concluding and having a peace about the decision to go ahead with the pump instead of straight to transplant....(after many long prayers) the decision was taken away from me.

So I was officially put on the list this past Monday, and now we wait!!!!
I am really hoping and praying that I continue to Serve, and Love and Trust HIM while I wait!!!!!!

Day of Heart Cath

My dear friend Jenn went with me to have my Heart Cath done, which was a long day for both of us... Maybe longer for her!!
She came and picked me up at 10:30 am, my appointment was scheduled for 3:30, but they wanted me there by noon....so we got there by then... I was hoping that they would get me in earlier than my time, but they wound up not getting me in, ( well taking me back) until 4:00pm. I did not actually get in the cath room until about 5:00, and I do not think that I got back to my room until about 6:15. We where able to leave at about 8:15, so Jenn got me home at around 9:15 or so... I am sure this was a very long day for her. I so appreciated her company, we had very good conversation...I learned a lot about Jenn and I think she learned a lot about me.
It was a very good day considering!!!!!!!!

First Day of Transplant Workup

This is the picture that the Transplant Team will use for my file, I am not really sure why they do this but here it is!!

This is from the morning that I started all of my Transplant Process. Kids obviously were not ready for shool yet.
I wanted to have something for the kids to remember everything by...I hooe that later in life they can look back on this time and see how GOD grew thier faith and mine through all of this.

Aren't they just so cute!!!!
Well I do not know what Connor is doing....so don't even ask.

Next Steps, and Dates

I go in tomorrow the 1st for a right heart cath, that they will do through my neck this time..
Then the surgery is set for next Tuesday the 9Th. I am not sure about the time yet..I should know this on Wednesday or so.

When I saw my Dr this past Friday he said that I met all the criteria for the surgery, he just had to have this test as a formality.

So they will do the test tomorrow and then they present everything to the transplant team on Tuesday the 2ND, and then to the LVAD team on Wednesday the 3rd.

I will be kept on the transplant list as active, however stable, as long as there are no complications from the surgery or from having the pump (IE..blood clot, or strokes). If I am having problems from the surgery or the pump then they will move me up on the list as more critical.

Please keep me and the family in your prayers, as this is going to be a rough road ahead for ALL of us!!!!!!

Thank you all in advance for your prayers!!

Update from Last Week

Last week was my appointments for the transplant work-up!!
It all went good, well as good as it can go..!
I had to be at St. Lukes on Wednesday at 8:45, and I did not get there until 8:55, because there was horrible traffic and wrecks that day.
Anyway I got there and checked in met with the Financial Advisor. She informed me that my insurance will pay everything after my out of pocket is met, which is 2500.00 a year. So this was absolutely great news!!!!
Then it was over to the lab for my blood work, where I had 16 tubes of blood taken. I started feeling bad after about the 6Th tube. They had me lie back and gave me some water and that seemed to help, they did not have to stick me again. We were able to get all 16 with the first stick.
I was very thankful for this~!
Then they gave me two huge jugs that I have to collect 24hrs worth of urine in, and bring back. I think that they ask some of the grossest things of us when we are sick. I have to keep it on ice in a cooler or in the fridge. Can any of you that know me see me putting urine in my fridge, NO WAY!!!!!!!

So then after that I met with the Nutritionist. She did not have anything to tell me that I already did not know.
Then I went and got something to eat.
After that I saw the Psychologist, who informed me that she thinks I need to see someone to talk about everything.
After her I met with the Transplant Coordinator. She basically went over all of the specifics on how it works...once again not much that I did not already know.

On Thursday I had to be at the Quinn Tower of St. Lukes at 7:30, this time I got there at 7:20..they got me all checked in and then started right at 8, I had an ultrasound of my veins in my neck and then of my veins in my feet all the way to my groin.
From there I went to the 10Th floor and had a bone density test, then I had an ultrasound of my kidney's and bladder....then I had to drink this nasty stuff and wait for 45 min and have a CT of my brain, chest, and abdomen.
I was able to get done around 12:30, so my mom and I met Wendy for lunch and then we came home.
I was so tired that I went to bed, and then got up around 5:30 and then went back to bed at 9, I don't think I have quite yet got all rested from these two days.

So I know go back this Friday the 29Th and have a Pulmonary Function Test, which is a breathing test, and then I see my Cardiologist at 10:45.
Maybe we will have more definitive dates then.

Thank you all for your prayers!!!! I continue to need them, so thank you in advance!

Disibility Hearing

Well I had a disability hearing today..I had applied back in August of 09 when I started getting worse, and they put in my first defibrillator.
I had applied and been denied twice, so I had to go in front of a judge to see if I could plead my case.
Thank the Lord, he enabled for Sarah to have her radiation changed to that evening, because the machines where down. (which never happens). I asked her if she could take me and just happened earlier that day they had told her that they needed her to come in the afternoon instead of the morning, so she was able to take me. My how the Lord works even when we do not see it!!!!
So she took me and we got there at 9:30, which is when the attorney told me to be there. He did not get there until about 10 minutes until 10:00 which was when the hearing was scheduled for...( a little aggravating)
Sarah had to stay outside...I was so scared and nervous. I am not one that is normally in situations like that and it was so intimidating!!
They swore me in , and then my attorney started asking me a bunch of questions....which I had already answered to him about 3 times, but he had to ask them in front of the judge. He made me feel so inadequate and lazy. Every time he said sssooooo, you do not do anything during the day...(me).No Sir.....and you still have to take a nap most days even if you do not do anything......(me)..Yes Sirr....
I had heard him say that about 10 times and I broke down and started to cry....like I needed to be reminded that I am not able to take care of my kids the way I should, or my husband, or my house, I understand that I am incapable, but hearing this over and over just really upset me.

They gave me a tissue and wrapped up my testimony, and then called Sarah in there. They swore her in, and then asked her how long she had known me, and what she has noticed over the past year due to my health...I think she may have been in there for about 5-10 minutes, and then she was sent back out.

Then the judge asked the Dr that he had there what his opinion was, and he said that he absolutely agreed with what all the paperwork had said and with what I was saying and that he found that I was disabled and was not able to work.

PRAISE GOD!!!!!!!

I am so thankful that this is done, one less thing to think, and stress about..
I am also so thankful for Sarah, who is always here when I need her, even though she is still going through her own battle! I love you more than you will know. Thank you for always being here to take me somewhere or just to do my laundry!!!!!

Talk to you all soon..

Dates

I finally got a call from the transplant team, they have gotten all of my dates scheduled for the testing.
I now have a transplant coordinator- Amy, and they will begin everything on the 20th of October.
On the 20th I will have blood work and consultations all day long..then on the 21st I have about 9-10 tests that they will do. The last test will be on the 29th of October, I also have an appointment with Dr. Kar that day..
So as for now that is what we are waiting on.
I am doing a little better controlling my worries...not that they have completely gone away, I am just trying to give them up to the Lord as soon as I start thinking about them.
Please continue to be in prayer about all of the testing and my attitude towards it all.