Sunday, July 31, 2011

Genetics

When I go back to Cleveland in September I will be seeing a doctor for Genetics Counseling. This is what I have found out so far from them in a packet they sent me.


Hypertrophic Cardiomyopathy (HCM) is the most common hereditary cardiomyopathy and may affect approximately 1 in 500 individuals. HCM is characterized by thickening of the heart muscle. It usually affects the left ventricle and often involves the septum (the muscle that divides the left and right sides of the heart). The thickening can cause stiffness and makes it difficult for the heart to pump blood. Obstruction of the opening and closing of the heart valves may occur.



Symptoms:
 -shortness of breath usually following exercise
-chest pain
-palpitations
-dizziness or syncope (passing out)


How it is inherited
In many cases HCM is an inherited condition; it is generally inherited in an autosomal dominant manner. Autosomal means it affects males and females equally. Dominant means that only one of the two copies of the gene needs to work improperly in order to develop the disease. A gene is part of our genetic material that contains instructions for our bodies. Humans have two copies of almost every gene. Many genes have been identified that cause HCM. children of people with HCM have a 50% of possible developing the gene.

Week 2 of Revovery

Woo Hoo!!! Two weeks down and my incision is looking pretty nasty but I think it's healing well. Well until yesterday until when Layla jumped on me and hit my incision dead on. So needless to say that was bad and it hurt all night. Thank Goodness for pain pills and frozen peas :) I did have a phone conference with my Rn form Cleveland and she said things are going well and that I could drive again. She also reminded me of my appointments coming up and that I still have some limitations. I have a cardiology appointment on Wednesday with my local Cardiologist. He has to check my incision and we should be starting my Viagra at that time too. I am praying I do not have any bad reactions and it helps me. The healing process is going well. I have not had any pain from the site and no chest pain either. I was able to walk the whole grocery store with my husband and not have to sit down to catch my breath and was not exhausted and in pain at the end of the trip. This for me was a huge deal and my dad and husband were both thrilled. I was also able to get out and have dinner and a movie double date with our good friends the Wohlrabe's which was great. And this week I had some girl time with Renee, Monica and little Emma. I definitely need some fun time. So overall everything is going well. I fell great and I am back to my old self and weight which makes me and my family very happy. Now to just pray it stays this way and I heal fast.
Two weeks down and four to go......

Thoughts: Yay for feeling good and I can't wait to heal so I can work out a little and walk the trail with my hubby and puppies <3
Prayers:
*I want to ask for prayers for my Friend Barbra, I know her and her son through Broken Hearts of Big Bend. She is going through a lot today and had a hard loss in her family some years ago and just needs to prayers for strength and guidance to get through what God has planned for her. I love you Barb!
*Praise the Lord Ramsey's Biopsy was a BIG FAT ZERO!!!

Monday, July 25, 2011

Home Recovery Day 5 and 6

Day 5 - Sunday is our lazy day so I just laid around and caught up on shows I have missed. I also made Dewon and I omelets and then paid for it later. Took a pain pill and went to bed early.


Day 6 - Set up doctors appointments and tried to relax but my incision site has been hurting me. It feels like it is pulling but I guess it is just healing. I can see some of the scar and it looks nasty!! Dewon thinks it is funny because I went to school to be a nurse but I can not stand pain and icky boo boos on myself. Weird huh!?! On a positive note we did go to the grocery store and I walked around the whole store and was so happy because I didn't leave the store out of breath and in pain. This is the first time in a year that I was able to walk the grocery and not have to take a break, made the trip a lot faster. The thing I don't understand is when it is just me and Dewon in our house and yet we spend over 200 dollars when we grocery shop. ughh! I also put some of the groceries up which is good for my arm but I do feel the pain now so I am taking a bath, some Tylenol and going to bed. 
Good Night <3

Saturday, July 23, 2011

home recovery day 3 and 4

Day 3 - So today is one week from my surgery and I seem to be healing pretty well. It still looks yucky but it is not hurting very much anymore unless I raise my hand too far up. The strips are starting to raise so hopefully they will fall off and I will have a small scar again. 
The only real pain I am having is from when they scrapped around in my chest but thankfully I am not taking any pain pills during the day anymore. I got to get out for a few and shopped for a birthday present with my friend Ting, which was fun....


Day 4 - We slept in today and then got ready and went to Lydia's birthday party. After that we went to let the dogs out and to dinner and a movie with the Wohlrabe's and now I am laying in bed exhausted and ready for bed.  I am so happy I got out of the house and had a good day, I needed it!!    good night :)

Thursday, July 21, 2011

home recovery day 2

Today has been a pretty lazy day. I have been cuddling with the pups in bed writing blogs and watching television. I was able to clean up this evening and then went to eat dinner with my daddy and hubby. It was delicious and I love spending time with them. Plus or conversations are always so funny. Back home now and relaxing. I get so tired now which makes me frustrated but I guess I still need time to heal.
I looked at the incision today and it looks pretty good and some of the strips are starting to raise, meaning they will fall off in the near future,Which is good! 


Thoughts:
*Thank you daddy for visiting..I missed you and love you so much xoxo
*Happy I am feeling better and ready to heal up and not hurt anymore!!!

Riley

Riley Children's Hospital is where I pretty much lived the first 5 years of my life. I remember playing with the kitchen set while waiting for my next exam in the radiology department. The glass elevator that we would ride up and down just to have some fun. It was amazing because we could see out of it and I loved looking at all the Disney dolls they had hung up in the main room of the hospital. The best thing was when my family would share the bed with me to bring me comfort. There were many nights dad and I would sleep together and then of course my grandma and brother Aj would share apart of the bed to play games with me. Those are the moments I remember the most not the pain....But it was also the hospital that kept me alive and thanks to the wonderful physicians, especially Doctor John Brown, and nurses who gave me life.

Here is my early years story: Where it all began
December of 1988 is when the doctors heard a heart murmur at 4 months old.
On June 8 1989 I had a physical exam with Pediatric Cardiology and during the exam the doctor noted I appeared to be a healthy toddler with clear lungs a healthy weight and lots of curiosity. Until she did an echo which revealed sever sub-aortic stenosis. An x- ray showed upper normal heart size and normal pulmonary vascularity and an EKG revealed a sinus rhythm with left ventricular hypertrophy  in a strained pattern. They then scheduled me for a cardiac catheterization on July 21, 1989 where they would also give me my diagnosis and Dr. Brown then felt like an apical aortic  conduit was the right surgery for me. On September 1,1989 I had an apical aortic conduit inserted. October 19, 1990 I went back to the operating room because I had conduit obstruction. They took me back to the operating room they then   placed a shunt from the thoracic aorta and opened the distal anastomosis. They also placed a gortex patch over the distal anastomosis because they found I had a rather marked fibromuscular hyperplasia of the distal end of the homo graft conduit distal anastomosis. Basically they placed the shunt to clamp it and then patched up my conduit with something like surgical dressings. April 17,1991 admitted for repairs to the conduit. On April 25,1991 I was taken again to the operating room where they put me through a standard cadiopulmanary bypass, using both antigrade and retrograde cardioplegia, an inspection of my aortic valve which was thickened had the most significant discrete fibromuscular subaortic stenosis that the surgeon had ever seen. I then underwent resection of the membrane and a septal myotomy with dilation. The procedure went well and I was taken off bypass. From 1991 to 1995 I did good with the surgeries as a toddler and medication.
 March, 28,1995 I had a ventricular septaplasty and was admitted to Riley. During post op it was found that I had complete heart block and a very slow underlying heart rate and this is when I received my first pacemaker.

Wednesday, July 20, 2011

We are Home

Yesterday we flew home from Cleveland. It was a long day of travel for me and I was very sore when we got home. Not to we had some crazy experiences in the airports. First we had the wheel chair "police" yell at us because Dewon wanted to push me in the airport and we were told several times we needed permission to be pushed and a lady yelled at me because I got in the wheel chair wrong!?! The worst thing was she asked me if I really needed the wheelchair. If you would have seen me you would KNOW I was not just looking for a thrill ride...the second thing was on the second flight I had a little boy who wanted to kick the back of my chair every five seconds....needless to say I was not happy. So we finally got home and I got some food, took a pain pill and laid down. My friend came to visit so that was a plus and I got to see my furbabies even though at first they seemed not to miss me at all. I went to bed early and slept great in my own bed next to my hubby and pups.




Today I woke up in some pain but nothing real bad. My hubby took care of the dogs and went to the pharmacy and store for me which was nice because I got to take a nap. He also for the first time in the eight years we have known each other cooked a home made meal for me. Baked Ziti which was delicious and it was also the first meal I ate the whole thing and kept it down. Yay babe!!! Through out the day I have been laying around and trying to use my right arm a little more but I have been pretty sore and now my chest area hurts where they were in me scrapping tissue off my incisions. Overall I am a very happy woman today and feeling better. I also am back down to my original weight of 120 pounds. It is funny to know that I can have 13 pounds of fluid on my heart and lungs...weird!


My thoughts:
  I am very excited to see my daddy tomorrow when he comes through town to have dinner with us and even more excited that my birthday is in 13 days.
 I also want to thank my good friends and family who have been checking on me and Dewon through this all and of course my husband for putting up with me and waiting on me hand and foot . I love you all so much and want you to know I wouldn't be here without you :0) xoxo

Monday, July 18, 2011

Recovery Day 2 and 3

Day two of recovery was rough. I was in pain all day, not only from the incision sight but because they had given me so many drugs during and after my procedure I had got constipated. So they gave me lots of stool softeners which just made it worse. It was just a miserable day, plus my lip was still fat from the breathing tube and I was super tired. I am so sorry for those of you who called but I was just not in the mood to talk and was having problems just sitting still. I did not sleep very much at all this night and was getting very frustrated with how I felt and the fact that I couldn't eat and was getting weak.


Day 3 of recovery is going better. I FINALLY went to the bathroom and that made things a lot better. I also got my device checked and they said everything is ok and I can fly home tomorrow. I just can't lift my hand above my head for 6 weeks, no straining my right arm or shoulder and no lifting more then 5 pounds. The yucky part is I can not even bathe until Thursday so I have to have Dewon give me sponge baths which is not sexy at all. And it is so funny when I have to ask him to do my hair lol. Well hopefully we can fly home tomorrow morning and then anyone who wants can come visit or call. Just a warning though I look like I got beat up so don't be alarmed. Thanks again for all your support. luv ya!

Saturday, July 16, 2011

recovery day 1

SLEEPY

INCISION 
I didn't get back from surgery until one am and was super groggy. Thank God Dewon was there and made me feel better. Apparently I had been yelling for him :) So they went in to take the two bottom chamber leads out because they were showing to not be working but when they got in they found they were not working because there was a lot of scar tissue on them. So they left them in and cleaned them up and now they work like brand new ones. They also placed a new lead to the left side of my heart and took out my old ICD and put a new one in. The down fall to all they did was it made my surgery last seven hours and because of all the manipulation they had to do in my chest I will be super sore for awhile. They did give me great meds because I don't remember anything and had no pain when I first came out of surgery but some how gave me a fat lip. I am guessing from the breathing tube they put in during surgery. They took the main bandage off today, which hurt real bad, and I got to see my incision. I also got a cute pink pillow that people can sign to rest my arm on and relieve some pain. My hubby got me some sushi today and walked around with me so that was a plus but now I am in pain again so may not be making much sense because I just took more pain medication. So I will wrap it up. Thanks again for all the thoughts and prayers...they worked!! luv ya!

Friday, July 15, 2011

SURGERY

After hours of waiting and starving the OR finally called and I will be going down in a few minutes. I am very nervous and am going to say one last prayer and then I will be in God's hands.

Thursday, July 14, 2011

SURGERY

I will be going into the Cath Lab around 8 am tomorrow morning to have my device changed, two leads extracted and one new one put in. So I need lots of prayers for a safe surgery, fast recovery, and prayers for the Lord to be with the physician as he performs the procedure. 
I will not be posting anything for a few days due to surgery and the fact that I will be tired and hurting. But I will have someone in my family post if they can.

Prayers

I have had the worst chest pain the last 24 hours and nothing seems to help. I have taken so many pain killers, anxiety medication, nausea medication because all the pain meds are making me sick and I need some relief. Not to mention I might have the surgery tomorrow and am scared for that too. So I am asking for prayers. Please take a moment and pray that I can get some much needed rest and for  the strength to get through this. Thank you

Day 4

I had a bad night... I had some really bad chest pain and it took two pain medications to get rid of the pain. Between the hot flashes I was having and then feeling of my heart was going to explode it was not a good night. I can tell you that fentanyl is an amazing drug. It had my pain gone within thirty seconds of taking it and the last things I remember was looking up at Dewon telling him I feel weird. Today I am having pain again so I got some morphine and am getting a little scared I am having all this pain now. I hope they figure it out soon because I do not like taking all this pain medicine and I need to be in great shape for the procedure. Well the medicine is kicking in so I am going to rest now. Feel free to call, text or leave messages here or on facebook, I need the prayers and warm thoughts. Thanks!

Wednesday, July 13, 2011

Day 3

Lazy Day!!!
     Today we have just been sitting around watching T.V. They told me my potassium was low today so I have taken four pills to bring it up and have also had a magnesium drip. They are trying to get my potassium and magnesium back up to a normal range fast so my device does not shock me falsely. The doctor also came in and said I lost two liters of fluid yesterday so I am getting one more small dose of lasix today and then I will be done. They also are talking to schedulers to get me back on the Cath Lab list to have my procedure soon. So now it is a wait game. Thanks again to everyone who has been calling and playing games with me online. Love you all!!

Tuesday, July 12, 2011

update

I AM GETTING VIAGRA...  The Pulmonary Function doctor decided to put me on Viagra to dilate the blood vessels in my body there for helping me get blood and oxygen to the left side of my heart. He says this will help me fell better and I will not get as out of breath when I exert myself. It is a little weird but if it helps me I am all for it. I would love to be able to walk through the mall and not feel out of breath and have chest pain. And no I will not be horny all the time, I know some of you are asking that.So yay to starting Viagra in the near future! :0) 

Day 2

Last night I had more chest pain and I had to get more morphine. After the medication I was finally able to sleep until they started rounds this morning. After a few hours of getting poked and questioned I finally got some more sleep. The doctor came in and said I had lost a liter of fluid and that was a good start so I will get more lasix today and try and yield more fluid. On the down side my blood pressure is on the low side and my potassium is high so they are monitoring that closely. And one of the doctors told me I eat bad so I guess they are sending dietitian to see me soon. Which I don't understand cause I eat small meals and I eat mainly baked chicken and fruit but I guess that is bad too according to him..


On another note, I am BORED!!! I didn't plan on being admitted so I have nothing to do besides Facebook and use the internet which gets old fast. So if anyone wants to call or text I would love that :) I also want to thank Ting for texting me last night and bringing my spirits back up. And Laura for watching my crazy dogs. Thank you all for the prayers and support....we love you!

Monday, July 11, 2011

Day 1 Disaster

writing blog

"The box"

second breathing machine
Woke up early for my appointments today.I started with an x-ray and then I went to the pulmonary function lab where I did breathing tests with these two machines. The box was scary and they cut the air off for a few seconds and made me blow in a tube. NOT FUN! The last test I had to walk for six minutes while they monitored my heart and oxygen saturation's. I made it the whole six minutes and was very proud but also very tired. I then went to a gyno appointment where they said everything was good but the doctor was rough with me and that made me mad. Next, I went the EP Clinic where they checked my pacemaker and when they tested my bottom lead they lost capture of my heart beat and it made me cry and feel bad. (This means they pace the bottom chamber of my heart and they look for a pause or stop and that makes me feel bad. It only lasts for a few seconds but they need to do it in order to make sure my leads that attached from the device to the heart are working properly.) I then seen my physician and he said that he wanted to take the bottom two leads out completely and add a new one that would work better for me. They have to go in and extract them using a laser and there are some severe risks involved which he explained to Dewon and I. Last, I went to see my pre-transplant doctors and they believe taking the leads out and putting a new device in will benefit me in the long run. They also were concerned with all the extra fluid I have on my heart and lungs.So they admitted me today. (For those of you who don't know me when I retain fluid my belly swells, therefor I look pregnant but it is really just the extra fluid, I weighed 133 today and my belly was huge meaning the diuretics are not working.) So the plan is to admit me to the heart unit and I will be getting lots of diuretics (water pills) to help me loose the fluid and for them to watch me. The goal is to get me in great shape all around so that the surgery will go well and I will have little to no complications. We do not have a surgery date now and were told we would be here the rest of the week at least so I am not very happy....but I do understand. I have been in my hospital room for about four hours now and had some chest pain and irregular beats so they gave me morphine and the nurse also started the lasix so I am really sleepy and peeing every five minutes...not a good combination. :/

Sunday, July 10, 2011

Cleveland Clinic July 2011

We safely made it to Cleveland after a short flight to Charlotte and then an hour and half flight to Cleveland, where Dewon was sound asleep and I was afraid clinging to the chair with all the turbulence. We get our  bags and then the crazy cab driver drove "speedy gonzales" style to the hotel running severely lights. Quit an experience! We checked in and got some sushi and grilled chicken from the hotel restaurant, that is amazing by the way, and now I am soo tired and ready for bath and bed. We have to get up early and be at the hospital for my appointments with the pre-transplant team so I will let you all know how that goes tomorrow.
Thank you everyone who have called and text all the prayers and encouragement it means so very much to me and I love you all. Good night!

Friday, July 8, 2011

Prayers Needed

last night I got word that a lot of my heart friends from BHBB (Broken Hearts of Big Bend) are going through some rough times with their health. BHBB is an amazing organization that reaches out to families who have children with congenital heart disease and some patients that have had heart transplants. So today I am asking for lots of prayers not only for me but for them as well.

Ramsey- biopsy of her heart showed grade 3 rejection. she is a very strong woman who I met through the organization who had a transplant last year.
Baby Wyatt- who also had a transplant and got sick and is recovering from a bug so he can have his biopsy
Baby Sean- this little boy has congenital heart disease and other health complication and was hospitalized yesterday so prayers for him and his family are greatly appreciated.
And last but not least for me, my husband and I will be traveling to Cleveland on Sunday and we will start the pre-transplant procedures monday and then pacer change on tuesday

Thank you all for your thoughts and prayers!

Monday, July 4, 2011

My Blog

I just created this blog today and I will be using it to share my struggles with being a "heart patient." I am hoping it might help someone else in the same position I am in one day and to bring awareness to heart disease. I will also share my thoughts and feelings when it comes time for the big surgery and my trips to Cleveland and some about my life.
   Things I have been struggling with lately:
I have a few friends who have either had a baby or is pregnant and am having a hard time with the fact that the possibility of me having children of my own is slim to none. I have a friend who I went with to an ultra sound appointment and it about killed me to see the little baby's heart beat inside her. The fact that I can never have a child of my own has never really bothered me before. I have known since I was little that having a baby would be very hard on my body and could kill me or the baby and possibly the both of us. But having a husband and a home now I want it more then ever. My husband and I have talked about adoption and that has been our plan and still is but the fact that I can not conceive "our" baby and carry it is a very emotional thing for me. 
The second thing is I have been thinking about the transplant lately also and am completely terrified. I am ready to stop hurting and for a new life but am so afraid of the possibilities that something could go wrong. I see people pass away in my family and others and it seems that people forget about them after a short time after their death. I don't want something to happen to me and no one remember me, like my little sister for example. 
Just a few thoughts.....


the quick life story of my heart

I was born with hypertrophic cardiomyopathy. As a child I went through many open heart surgeries for my ventricular apical-aorta conduit it resulting in complete AV Block. Later I developed atrial fibrillation and got my first pacemaker. My teenage years I started having ventricular fibrillation and got a dual chamber ICD. In 2008 I was sent to Shands of UF to start pre-transplant procedures. I was automatically a status 1B on the UNOS list and was so excited. A month later I was taken off the list while doctors told me they would re look at my case in 2 to 5 years because I had high antibodies and faced rejection with a new heart. 6 months later at a regular check up I was told my heart was much worse and I needed to go through pre-transplant again. With one false excitement months before I was scared to go through it all again. January 2009 I was admitted to Shands and went through the pre-transplant procedures again. Numerous doctors later I was denied once again due to my antibodies and high pressures in my lungs. Feeling  like no one could help me I visited Cleveland Clinic of Cleveland, Ohio. The doctors at Cleveland were  hopeful and when the surgeon told me he was willing and capable of giving me a new heart I was speechless. Finally!!! I am currently a status 2 at Cleveland Clinic and have appointments every couple of months. Cleveland gave me hope again and I am blessed to have such a great team willing to work to give me a better life.  

Right Heart Caths

Every time I go back to Cleveland they repeat a Swan-Ganz catheterization. It is the passing of a thin tube (catheter) into the right side of the heart and the arteries leading to the lungs to monitor the heart's function and blood flow. They do this to retest my pressures to see if the pressure numbers are better or worse. The last time I was admitted to Cleveland they were in the teens and with medication they were doing better. When I visit Cleveland I am put through two to three days of tests to insure my place on the transplant list. It is very nerve racking for me because I never know what they will say and if they will want to keep me or move me up on the list. So far we have been on the list with them for a little over a year and am waiting for them to say it is my time for a new heart and a new life.

Fun at Shands

Our ceiling tile


Me Painting


Aj being goofy
When I was admitted to Shands at the University of  Florida in 2008 my brother, Aj and I got to paint a ceiling tile that they later hung in the pediatric ICU area. We had so much fun painting and goofing off before they started my infusions. The objective was to lower my antibodies but unfortunately I had a bad reaction, causing my heart rate to drop and I was immediately taken off the treatment and sent home a few days later.